My Birthday: The Joy of Food Inclusion

I had been fretting about my birthday. On the one hand, I really wanted to see friends that day. We’d be leaving for Portland in two weeks, and I’d hardly been social at all since getting sick. If my illness kept me from celebrating even my own birthday with friends, it would feel like a bitter defeat.

On the other hand, I was ill. And overwhelmed.

Looming in my mind was the vision of a birthday cake. I couldn’t eat anything that remotely resembled one. I hadn’t yet deviated from the Specific Carbohydrate Diet, so my meals consisted, as they had for months, of mushy food like peeled and cooked carrots, applesauce, and spinach.

Even worse: I couldn’t bear to watch others eat cake on my birthday without me. Perhaps someone more magnanimous would have smiled her way through such a scene. I wondered if it made me selfish and clingy, but even if it did, the fact remained that such generosity was beyond me for the moment. Watching others eat cake on my birthday sounded like pretty much the most depressing birthday ever.

In fact, the more I thought about it, the more I realized I didn’t want to be around anyone eating anything I couldn’t eat on my birthday. I hated, hated, hated that feeling, still, and wanted to avoid it just this once. Not on my day!

This was what I wanted, at the least: To be spared the usual crushing loneliness of food exclusion, just for this one day. I wanted this so badly that I was even willing to forego hanging out with friends. I decided I would rather spend my birthday alone than spend it with friends who were eating things I couldn’t eat.

But spending the whole day alone would be unbearable, too. A defeat just the same.

In what had become a typical scene, Ron and I talked about the options and I grew tearful and panicky, sensing the walls of my deep hole closing in faster than I could dig. Ron, calm, produced a solution. He emailed our friends a week before the big day:

On August 1st, Katie Songer will celebrate another trip around the sun. With a festive air in the lake breeze, we would love to have you guys over at our place for a birthday party. We all love Katie, and we both really want to soak up time with you guys now. It’ll be fun!

What: Katie’s b-day shindig

When: Friday August 1st, 6:30 pm

Where: Our place–walk down to the backyard or come upstairs if we haven’t moseyed there yet

What to bring: yourselves, your singing voices, and maybe some type of food (we’ll have a grill), and since Katie’s on a very specific diet these days, and it’s her birthday, let’s have what she’s having. If you want to bring something to share with her, here’s a handy list: burgers, fish, skinless chicken, avocados, ripe bananas, almond butter, natural applesauce (without peels), yogurt, natural grape juice, and very cooked veggies (green beans, peeled carrots, mushrooms, peeled peppers, peeled and deseeded squash, and spinach). If you’re not up for it, just bring a food that’s similar to what she eats. It’d be your birthday present to her. :)

Any way you slice it, it’ll be good to be with friends. Hope to see you there!

I was a little worried that he hadn’t said things explicitly enough. What if someone brought cake, or cheese, or even a horrible, taunting bowl of fruit salad? But I needn’t have worried–this was the Midwest. Midwesterners are Ron’s people, who communicate in polite, tangential phrases, and pick up on nuance even when it’s not there. His email might as well have said, Don’t even THINK about bringing fruit salad.

Our friends went above and beyond. They emailed to ask if I could eat this or that spice or veggie. They brought only foods that I could eat, and even found creative dishes to make from the strict list of ingredients. No one complained that there was no cake. They instead politely exclaimed on the tasty fare, despite its obvious inferiority.

I spent the evening in a shaky, relieved state of gratitude. This was not the best birthday ever, but it was a good compromise. And sharing food with friends one last time brought tears to my eyes.


For me, the significance of the evening went far beyond my last several months with colitis. Long before I read Andrew Weil’s passages on food as a symbol of inclusion, I had understood that symbolism through my own life experience. It was right here, in Madison, with some of these same people, that a deep shift had occurred within me years ago. And that shift had been intertwined with consumption–not of food, but of alcohol.

When I arrived in Madison at age twenty-eight, I still carried the secret burdens of a bullied, ostracized, painfully shy child. I had grown up starkly apart from the other kids in my high school. I made no true friends, attended no dances, tried out for no sports. I abstained from prom and wasn’t asked, anyway; I was never invited to a single party. In college, where I emerged from my shell, I still only rarely found myself in settings where others drank. There I felt so uncomfortable that I always found excuses to leave quickly. With friends, I instead talked and hiked and played Frisbee and board games. Whenever they drank and partied, I stayed away, reading books alone in my dorm room many nights.

In the years after college, I couldn’t avoid parties any longer. I had become too comfortable with myself not to make real friends, and by this time everyone except me, it seemed, had been drunk before. They had also dated, another realm I had also not yet entered, never having been on a single date. I slowly became adept at pretending, around these more-experienced people, to be comfortable.

But I steadfastly abstained from drinking, except the occasional sip out of curiosity. And I remained, as ever, secretly terrified of dating. It was only when I met Ron in Peace Corps, and when we finally did start dating, that I also tried drinking a whole beer one night. It tasted good. The world didn’t end.

My fear of alcohol stemmed from childhood. Growing up around Dad’s alcoholism, spending many weekends with him in his halfway houses, hanging out with the dozens of other men he lived with, men whose lives had been destroyed by drugs and alcohol–all of it created a mountain of sad and frightening memories. For many years, I was afraid that if I even touched beer, it would carry me down the path toward Dad’s brokenness. After I eventually realized I was not an alcoholic, I still feared for friends who allowed themselves to drink. And I had no desire whatsoever to be around drunk people.

So these were my tender secrets when I arrived in Madison, the broken parts of myself that I didn’t know how to express. That Ron was the only man I had ever dated. That my youth had been barren of romance until I met him, barren of so many experiences that most young people have. And that, for all my smiling and demurring, I was still deeply uncomfortable around alcohol and drunkenness.

The latter was a problem in Wisconsin.

We quickly made friends with others in our grad school program, and every social event–of which there were many each week–involved drinking. In Wisconsin, beer was everywhere. It was served in pitchers at the student union building and sports bars, served at the restaurant in the lobby of the theater on State Street (and allowed in the theater), served by the pub that sponsored the Frisbee league, served out of a keg at our department’s monthly academic gathering to showcase student projects. Everyone had it at parties and potlucks. Madison is a microbrew city; several colleagues took to brewing their own beer.

And here, for all my discomfort with alcohol, something began to shift inside me. I fled parties that involved keg stands, and scowled at one friend’s drunk-driving story. But actually, at the bars and student union and most everywhere else, I was having a great time with these people. Beer was present everywhere, but it was almost never the focus.

My good beer memories were becoming numerous. They began to pile up, and their pile began to rival the mountain of bad memories. And one day, after a couple years in Madison, I realized that the scale had tipped. I no longer minded alcohol at all.

I still never got drunk, but now I often drank. One year I laughed to Mom that I was drinking about five nights a week, at the pub after Frisbee games, at parties, or just a glass of red wine with Ron in the evenings. I drank quite a lot for someone who had still never been drunk. I liked the taste of beer and wine. I didn’t associate any of it with Dad anymore.

And I felt included. Really included. Standing at a party, or sitting in a restaurant with a beer, amidst the others, now fully one of them and not separated by my abstention, gave me immense relief and happiness. I no longer harbored my secrets. I spoke easily to these people of my lonely history, for they had become like family. I felt one hundred percent legitimate–no longer an impostor or pretender–in a way I never had felt until living here.

So this year, each time I had found myself at a gathering where I could no longer join in the food and drink, all of that history rose keenly to my mind. Madison was where I had come to truly belong at last. My belonging was interwoven with my participation, and I understood the privilege of that participation better than many people. I had consciously enjoyed the new feeling of belonging for a few brief and wonderful years. Now, through the curse of my disease, it had been stolen from me again–it felt as though colitis was forcing me once again to the outskirts. In dark moments, I felt like my body was punishing me for thinking I could ever truly belong.

That was why, as we prepared to leave this place, it helped to share food once again with my friends on my birthday.

Resolutions


Even when we have some leisure time, we don’t know how to use it to get back in touch with ourselves…We are not used to being with ourselves, and we act as if we don’t like ourselves and are trying to escape from ourselves. ~ Thich Nhat Hanh


As Ron and I prepared to move, I often felt off-kilter, out of alignment. It was hard to make sense of the world sometimes. An entry from my journal on my birthday, August 1, 2014, captures this.

Two mornings ago in Michigan, I learned via email that Twilumba had died. I exhaled an “Ohhh,” the wind knocked out of me. Both Mama Day and Twilumba, gone. A while later I started crying as I served myself my peeled, cooked carrots in front of the microwave in our hotel room. Ron held me.

Along with my grief, I felt shame. We’d been talking about whether to buy the Iowa Street house, and how we could comfortably spend a little money afterwards on repairs. Then here was Mama Agape, emailing me on Facebook about Twilumba. Mama Agape has been stressing for years about how to pay for Agape’s secondary school, and I don’t want to just send several thousand dollars when I don’t even know what kind of student Agape is. It’s such a bad precedent; it cheapens my whole friendship with Mama Agape; it’s not sustainable. But we could raise that much money. It gnaws at me that I’m tossing much more than that around to buy a luxurious American house when my Tanzanian friends are living and dying in such poverty.

I wrestle with this all the time lately, how to make sense of it, whether I can still call myself a good person, how to make up for it, how to be better. I can’t go to Africa right now–my health won’t allow it. I’ve settled vaguely on the notion that in order to help Africa or anywhere far away, I first must get healthy. Living in a peaceful place is part of that, although there’s probably some rationalization there. But when I think about having a big, open kitchen, with lots of light, where I can cook a macrobiotic or specific carbohydrate diet joyfully; and a peaceful study where I can write in quiet; and a backyard where I can garden, I feel so relieved. It would really help, to have a setting like that in which to heal, a place that’s easy to meditate and relax in, and cook in. So for now, I’m staying the course.

Last night, after spending the day stretched-thin from lack of sleep over housing, I gave myself a spa-like evening. It felt like preparing for my thirty-seventh year. I cleaned the apartment; I went for a walk; I meditated. I took a long bath, shaved my legs, washed my hair. Lit a candle, read good books. Read poems by Hafiz, wisdom from Pema Chödrön and Thich Nhat Hanh, plus a little of Healing Crohn’s the Natural Way and Mindy Kaling’s Is Everyone Hanging Out Without Me?

In the bathtub and shower, it occurred to me that I’m off balance. I distract myself way too much: with Harry Potter (we’re reading the series aloud) or with Blue Bloods on Hulu, or with reading The Week while I eat, or checking Facebook when I have a few free minutes. As Thich Nhat Hanh says, I act as if I want to get away from myself. I’m living too fast, letting life pass me by. I want to live slower.

As I learn about macrobiotics–a diet I want to try–and its concept of balancing yin and yang in food, I’m feeling like something energetic in me is also way off. Left to my own devices, I tend too often toward doing, accomplishing, organizing, intellectualizing. I bet I tend too much toward yang. I need to consciously act to bring softness into my life, to bring in more heart and soul. Sensuality. Maybe this will even be the key to my healing. Learning to really breathe; finding balance. Making it a habit, constantly, to sense whether I’m imbalanced and working to rectify it. Reading humor when things get too serious. Doing more things that have no goal, that don’t make logical sense. Spending more non-productive time.

Happy birthday to me. May this year be a year of life, gratitude, balance, and love. Amen.


 

In Transition

An entry from my journal, July 24, 2014…

Early morning again – this time 5:25 am, unable to sleep.

I finished my course of prednisone, tapering completely off it a few days ago. Today will be my third med-free day since about March 6, when I was diagnosed. The pred helped…for two weeks, then I had an awful flare. It seemed to be triggered by more fiber in my diet, then to continue with the tapering off the med. By the end of the med I was worse off than when I began.

It was so frustrating. During the 2-week flare, I sank back into depression, feeling like I was digging myself out of a hole that was filling in faster than I could dig. Not real depression–I laughed, I distracted myself–but despair. Then my mood improved a few days ago, maybe the second-to-last day on the pred, when I got my energy and therefore my life back. My summer.

I emailed my doctor asking what I should do next. He rattled off more meds to try. I’m waiting. It feels untethering, to not be grounded in Western medicine, but also empowering. Scary, daring. I talked yesterday to Jeannie’s naturopath in Portland, wanting to build a relationship before I even move there. It was a hope-building session, a blessed relief. She actually made a plan for me: one that includes diet, and supplements (turmeric, fish oil, vitamin D), and meditation, and some medicine. Her goal is to get me into full remission, med-free. She says it’s possible; she hopes it will work for me; she’s seen it work. She wants me to change one thing at a time, to see how my body responds.

It was the first time, since this whole thing began, that I’ve really felt taken care of by a doctor. Like she was actually looking at the whole picture, like I am–my chronic knee inflammation, my seborrheic dermatitis–and trying to get me truly healthy. Except that she’s knowledgeable and trained, while for me it’s been overwhelming to have the burden of being my own case manager, reading all my books and websites, scrambling, while sick and tired, to dig myself out. I felt taken care of. It makes me so mad that my PCP, who’s supposed to be that person, is so unavailable and disinterested. She never emails back unless I email her and call her half a dozen times.

It’s a week of transition. Along with that hopeful naturopath appointment, yesterday was Ron’s and my last Reach Out forum, a forum I volunteered to organize and run. It was small, maybe 15 attendees, but felt good to once again be comfortable standing in front of the group for the first time since before Dad died. I have finally recovered. It was good closure.

Just before the forum, another piece of closure: I finally, finally sent the long email to a supervisor at the DNR that I’ve been composing for years, detailing Ron’s and my frustrations. Jeannie and Mom have gotten so many iterations of this email as I rewrote and honed it. Now all that’s left is to send the other piece, the letter to even higher-ups making recommendations about policy. Yesterday morning I talked with the head of HR, who happens to be a friend. He was super-supportive. I wouldn’t exactly say sending these emails feels good, but I think it will be good to have sent them. Or at least, to no longer have not sent them, if that makes sense. For years, it’s been bothering Ron and me to have not sent something, not expressed, to someone, that we were wronged at the DNR. Expressed it to someone official and powerful. It’s still somewhat unfinished, because I’m curious how the supervisor will respond, and I urged her to contact me and offered to meet. But still, to set that whole thing in motion, to send the big piece yesterday–that was huge, the biggest step. Closure.

So yes, it’s a week of transition. At last night’s forum I said to a few people that this is our last normal week in our apartment, then after I said it I felt unsettled and sad. I wonder if this place, like Mom and Dad’s house in Pullman, will be one of our favorites we’ve ever lived in. Our first home together, and so beautiful and light, and with the lake swimming before our eyes every moment. How could it not be one of our favorites? It still doesn’t feel really real that we’re leaving. There’s a sense of permanence, entrenchment. This place is us. It is Bear and Kili. How could things ever change?

The warm sunlight just turned on, lighting the windows of the sunroom, shadowing the little fluffy clouds in grays and whites. The water is smooth glass in places, rippled fabric in others. Seagulls wing past. Distant traffic moves, the hum of a faraway train. A fish slaps the water. A gull crows and yodels. The sky is pearl, yellow-cream on the horizon, deepening blue above. The air is still cool.

In a few days we’ll drive to Michigan to say good-bye to Ron’s sister, then when we return we’ll start boxing. All these books will come down. It will all be dismantled. What will that mean? Who will we be, without this place?

What always makes me feel better is thinking of Portland: the mountains, the ocean, the forest, the Unitarian church, Mom’s house. I get so excited sometimes.

There’s one stress, aside from the inevitable stress of transition. What got me up this morning was housing, and money. I decided last Sunday, in an epiphany, that we must buy a house this fall. We’ve been scouring Craigslist for rentals, and the market is ridiculous–one-bedroom apartments for $1800 a month. Ron and I can’t afford that! And don’t want to–we pay less than $1200 for our lakeside place here. But if we buy, we could get a full, 3-bedroom house with a glorious kitchen and a big yard for a monthly payment of $1300. It’s just not a good rental market–everyone is renting, fewer people are buying (though the good homes get snatched up fast).

This decision to buy was a huge relief. I want a nest in Portland. Somewhere Ron and I have the best chance possible of actually being happy there. A real try. Mom offered to help; we looked at houses online, made a list, found a realtor–all in a three-day span. It’s stressful–it is a risk. What if we don’t like Portland? What if we flounder, never get jobs, or get great jobs in Corvallis? What if we buy near Gabriel Park then get great jobs all the way across town?

It’s all backwards. You’re supposed to build a good, stable career, earn the money for a house, then buy, then have kids. That works well; that order makes sense. We’re skipping a big step, gambling that after we settle into our haven, then we’ll miraculously land jobs that can cover what we’ve bought.

I tell myself we’ve had a run of bad luck. We cobbled together a ton of kudos in Wisconsin: published a field guide, got in the news a bunch for Reach Out Wisconsin, had a beautiful wedding, made a lot of friends, did great in grad school. But the DNR ground the life out of us for a while, and Dad’s problems came calling, and possibly as a result of all the ensuing stress, I’m now in the midst of my own major illness. I would have been applying for jobs, since April–I really would. Instead I’ve been digging myself out of my hole.

We need faith in ourselves. Faith feels like skating across a frozen lake, when you don’t know how thin the ice is. I need to just believe that we can earn more, be healthier, in the next few years than in the last few. That my naturopath will help me and it’s okay to be off the Western meds–that only 2 BMs yesterday means I’m on the right track. That the fact that we’ve published a book, and that I’ve got five years at the DNR on my resume, and that we’ve been on the radio several times and earned praise, will all help us build a career story that convinces people to hire us. That we’re not broken and worn down thirty somethings, but are experienced and talented and desirable. That this strong, intuitive feeling I have that draws me inexorably to Portland, and even to buying a house there, is correct: that God is pulling us toward something good, a haven, and if we follow my intuition things will all work out.

This is what I got out of bed for: to write this out and thus make it real and manageable, just the logical, predictable stress of a thirty-five-year-old in transition, childless but wanting a child, jobless but wanting a job, soon-to-be-homeless, even healthless. Of course I’m up early. It’s a wonder I’ve slept so well most nights. But it’s really not alarming, or even worrisome. I am likely to become healthy–there are many things I haven’t yet tried, and I’m doing everything right. My chances are good. With help from my family, I do have the money to buy a house. I am very likely to get at least some job in Portland. We’ll find a place to live.


 

Was I Ever Really That Healthy?

Each time I had an appointment with a new doctor, acupuncturist, or naturopath, I told the story of my colitis the same way. Symptoms started in October; I was diagnosed in March. My gut had always been healthy before this. I had always prided myself on my iron stomach, even living for years in Africa with no undue problems.

Sometimes, in these conversations, little episodes from my history would emerge. No, I had never been hospitalized…but actually, I had once been rushed to the hospital via ambulance for heat exhaustion. And I had once spent a miserable night in a remote village health clinic in Ghana. Yes, I had always felt well-nourished and been physically active…except, come to think of it, I had fainted twice in my life and been light-headed many times before that. Why yes, I had once had thyroid problems. And actually, yes, another time I had been low on Vitamin D as well.

The more I told my own story, the more confused I became. I’d always thought of myself as healthy. Was I?

I have always been skinny, energetic, and active. Mom sometimes mused aloud about what might make me so skinny, and I wondered too. I was the skinniest member of the family. Even doctors sometimes advised me, growing up, to eat big desserts and bowls of ice cream.

But I couldn’t have been malnourished. I always felt vital and enthusiastic, and had more energy than most people around me. Too shy to play team sports, in high school and college I was instead a devoted martial artist, studying Kung Fu for seven years and practicing nearly every day. I owned a punching bag and sparring gear, cross-trained by jogging and weight lifting, and sought quiet backyards in which to practise my forms. The Kung Fu tests lasted for hours, with no food or water permitted. At age twenty-three, I entered the brown sash test with a fever and a cold, but finished six hours later feeling clear-headed and healthy. I had sweated so much that the illness had been purged from my body.

Even before discovering Kung Fu, as a kid I enjoyed creating training regimes for myself. This was a secret game my sister and I played. We wanted to live up to the picture Dad painted of himself in his youth, the superjock that set push-up records in high school and led boot camp workouts in the Navy. Jeannie and I made up rules to boost our own strength. Ten push-ups every time we went to the bathroom. Five pull-ups from the low-hanging branch of the cherry tree each time we crossed Mom’s front yard. Later, in college, when alone in the bathroom I would stand in horse stance while brushing my teeth to strengthen my quads. I co-led backpacking trips for freshmen in the Wallowa Mountains. I took physical jobs, spending two college summers on a landscaping crew, working in the sun all day then practicing Kung Fu at night. “You look swarthy,” Mom said once as I sauntered in the door, my arms unusually tan under my city uniform. I felt swarthy. I was strong for my size, which wasn’t saying much, but my natural endurance helped me keep up with the rest of the crew.

Near the top of Kilimanjaro, age 25

In Peace Corps, I gave up Kung Fu, but life in my Tanzanian village was physical, too. I carried buckets of water up a steep hill in the dry season, washed my clothes by hand, took bucket baths. Without electricity and running water, cooking and cleaning took a good three hours every day. I walked everywhere–Ron and I once walked thirty miles in a day just to visit a remote village we were curious about. When the rainy season began, I tilled my whole farm myself, standing barefoot in the field and swinging the hoe over my head to break the earth, mimicking the villagers’ method. I tilled a little patch every morning before the daily rain began, working my way across the whole area until the entire half-acre was black and soft. When Jeannie visited, she and I climbed Mt. Kilimanjaro. By then our knees were both deteriorating, and we were hobbling like grannies by the time we got to the bottom, but we had made it to the top.

In Madison my lifestyle changed once again, but again I found ways to be healthy and active. Ron and I became devoted ultimate Frisbee players, joining teams year round to play two to four times a week. It was the first organized sport I had ever played. I was never exceptional, but loved running and improving my field sense and my ability to throw under pressure. We also biked a mile or two to classes each day in grad school, then the same distance later to our jobs at the Department of Natural Resources. And for three summers, we worked together on a field crew, surveying streams across Wisconsin, donning waders and hauling heavy equipment up and down streambanks, walking miles each day through cobble and mud.

Now, as a Sick Person recounting my history to my various doctors, it was reassuring to think all this out. I wasn’t remembering wrong. I had been healthy, my whole life until now, likely healthier than the average American–albeit not the average Tanzanian. I had accomplished a lot with my skinny body. It made me proud.

And yet, there were also many memories of health incidents. They didn’t fit neatly into my concept of myself. And over the years, they had begun to add up.

There were the fainting spells. In Kung Fu in my twenties, I never actually fainted, but dozens of times I came close. I would pull Sifu aside and tell him it was happening again: white spots blinding me, a ringing and rushing in my ears. Concerned, he sat me against the wall, instructing me to sip water with my head down until the feeling passed.

Twice in my life, I actually did faint. The first was in middle school. A friend had been in a horrific car accident, and I visited her in the hospital, where she was to remain bedridden with terrible injuries for the next six months. The first time I saw her, I took in her quiet room, her clean sheets, the patient nurse smiling as she moved around, and my friend’s own accommodating, sad smile. And the next thing I knew, I was seated with people gathered around me, holding me and laughing gently. They said I dropped to the floor in one swooning motion, just like in the movies.

The second time I fainted was ten years later, in Peace Corps training. We had to prick our fingers and practice placing a blood sample on a plastic slide, in case we ever suspected ourselves to have malaria. I had pricked myself a few times for biology labs in college, and prided myself on not being squeamish about it. But for some mysterious reason, as I sat amidst the others listening to them squeal and shudder at their own pricks, I stared at the blood on my slide and started feeling light-headed. I asked the volunteer next to me if I could rest my head on his shoulder, and awoke with the Peace Corps doctor gripping me firmly around the shoulders, telling me I’d had something akin to a seizure–I had gone ghost white, lost consciousness, and stiffened.

Add to those incidents the heat exhaustion in 2007, plus yet another mysterious illness just a couple years ago, in 2012.

In January that year I began having strange symptoms–blurred vision, dizziness, racing heart rate, fatigue. I went to the doctor, who tested me for everything we could think of. Celiacs, diabetes, inflammation, anemia. Everything came back normal except Vitamin D, which was low. I began to take supplements. My symptoms continued.

Only after several weeks of worry did my lightbulb go off one morning. I’d awoken feeling dandy, then eaten my usual bowl of oatmeal, after which I once again felt so dizzy that I had to lie down. It occurred to me that the oatmeal might be the key. I always ate it topped with a hearty pile of walnuts, and I remembered suddenly that nut allergies are common. A quick Google search revealed all my symptoms listed tidily–racing heart is characteristic of nut allergies. I ceased the walnuts the next day; the symptoms never returned. Mystery solved.

Then there was my chronic knee pain. And my Raynaud’s disease. And seborrheic dermatitis. And now, my ulcerative proctitis.

It was indeed starting to add up.

Was I sickly, after all? Had I, perhaps, really always been sickly, always weak, and just never admitted it to myself? Had I been pushing myself beyond my limits all these years? Was that why I’d gotten faint so often in Kung Fu–because I couldn’t actually handle my own rigorous training?

And what about Peace Corps, that physical lifestyle I was so proud to have lived? As much as I’d loved it, I returned home with a myriad of health problems. I’d lost weight on the daily diet of rice and beans. I had developed back problems and a hyperactive thyroid, and my knee pain was worse than ever. I saw a series of doctors and nursed myself back to health, and soon I felt good as new, just in time for grad school. But now I wondered. Had I really been able to handle Peace Corps? Or had I come back home just in time?

Being sick was making me question my whole concept of myself. Of my health. Despite what felt like glitches over the years, I had generally assumed I could rely on my body, could keep up with my peers, even outwork them in some cases despite being slender. My own vigorous health was a source of great pride for me–it was part of who I was. That health was gone now. The longer I experienced its absence, the more I wondered if it had ever truly been there.

My Vitamin D test results came back: I was still in the normal range. It was a relief to get a little piece of good news.


 

Acupuncture Number Two: Disaster

A month before we left Madison, I had a series of medical appointments.

First up was a dermatologist. I wanted to know about the “flakies” on my face. They weren’t present right now–they came and went, which was frustrating, since I wished I could show them to the doctor now. But I could describe them and bring a picture for her to see.

I suspected the flakies were psoriasis, because Dad had had that skin disease. Although I wanted an answer, I dreaded this diagnosis. Psoriasis can be disfiguring. Dad had red patches on his forehead or temples sometimes, and horrifically crusted skin on his forearms that he usually hid, but that I discovered when he was in the hospital. I told myself that Alison, too, had psoriasis, and she was not disfigured. She said it just appeared on her knees, little hints of flaking or color. Since psoriasis is an autoimmune disease like proctitis, both ailments responded well to her vegan, antiinflammatory diet.

At the appointment I got a piece of good news: This was not psoriasis. Based on my description, the dermatologist suspected yet another autoimmune condition I’d never heard of, a more minor problem called seborrheic dermatitis. Like most autoimmune diseases, its cause is unknown. It typically strikes in the prime of life–between ages 30 and 60. The dermatologist recommended dandruff shampoo if the condition flared up on my scalp. For my face, there wasn’t much to do except moisturize.

I could add dermatitis to my list of autoimmune disorders…but at least I wasn’t adding psoriasis. Maybe whatever diet worked for my proctitis would also help with my skin.

Next I had a blood draw. Like the dermatology appointment, I had requested this one, too. Ever on the hunt for clues about my illness, I wanted to know about my Vitamin D levels. In one of my many books–I couldn’t remember which–I’d read that low Vitamin D can lead to inflammation. Two-and-a-half years ago, I’d had low Vitamin D. I’d taken supplements and brought the level back to normal, and had continued the supplements ever since. I wondered now if the supplements weren’t enough. Had my Vitamin D levels fallen again, perhaps due to my cloistered writing lifestyle? Lately I stayed inside far more than I used to. It would be interesting to get the result.

The day after these two appointments was my second round of acupuncture. I was looking forward to it, despite the bout of sobbing I’d experienced the first time. Those tears had felt good. Regardless of what acupuncture might do for my gut, it had already accomplished something emotionally, like a cleansing.

Photo by EmmiP at Morguefile.com

This time Ron needed the car during my appointment. He dropped me off at the office and I waved and smiled as he drove off. The woman with the straight brown hair greeted me and led me past the Buddhas and Zen art to my little room, leaving me to put on a robe and lay atop the sheets. She returned and again I felt the tiny sting, then the soothing heaviness, of each little needle.

No tears came this time. Perhaps I had spooked them by expecting them. But I loved the Tibetan singing bowls and the chance to slow down my racing mind, which was always full, these days, of the logistics of our impending move.

Ron picked me up in the bright afternoon sunlight. I felt tired and relaxed. It would only be a ten minute drive home, and as he drove I told him dreamily about my appointment.

As I talked, I noticed myself beginning to squirm.

I paused, frowning. My belly felt a bit bloated, the way it often felt lately since starting the prednisone. I was still on the drug, tapering off it now. I rested my hand absently on my stomach, and noticed a dull ache along with the bloating. Come to think of it, for a minute or two I’d been unconsciously pressing back against the car seat to make room for what felt like an enormous, increasingly painful belly.

Letting out a slow breath, I adjusted the seat to lean back farther. This was really beginning to hurt.

“My gut hurts,” I said with consternation. It was too bad that this was happening just after my blissful acupuncture session.

We were stuck in traffic. It was a Wednesday, and in summers there were classical music concerts on the steps of the state capitol, with thousands of people picnicking on the lawn that encircled the building. Madison’s little downtown was temporarily gridlocked as everyone looked for parking. I began to worry. Along with my increasing pain, I was now having urges for a bathroom. I tilted my seat back even farther, beginning to sweat. What if we didn’t make it home in time?

“This really hurts,” I repeated, gasping. Ron looked worried. We were inching forward, not even halfway home. At this rate it would take us an hour to get there.

Both of us were thinking the same thing, and said so. This reminded us of a disaster that had struck me several years ago, in 2007.

It was the summer after our first year of graduate school. We were 29, and although we had broken up the previous winter, we’d continued taking classes together. We even had the same internship now, working with farmers through the County Land Conservation Division. We’d gotten used to being colleagues. Ours was a strange, uneasy friendship that still felt a bit like dating, but we’d also discovered that we worked well together.

My crisis occurred on a sweltering July morning. We were attending a plant-identification workshop outdoors. We drove to the site together in a big County truck, blasting the AC on the way. I was tired, and at 8 am it was already around 80 degrees and humid. When we joined the group of scientists in the field of tall grass, I began feeling lightheaded, and whispered to Ron that I needed to rest in the truck. Already I sensed that something was wrong–I asked him to check on me after a few minutes. I had felt perfectly healthy lately, and was unnerved by my unexplained light-headedness and queasiness.

In the truck I turned on the AC and tried to lay back, but I could not get comfortable. Despite the cold air pounding against my skin, I felt unbearably hot. It was as if some threshold had been crossed in my body. I couldn’t cool down. I wasn’t sweating much at all. Nausea and cramping came over me, and I felt that I needed a bathroom, which worried me–there wasn’t one nearby.

When Ron checked on me, I fearfully and apologetically said I needed to go home. This must be a strange sort of cold, I thought. I must have a fever, and I now definitely needed a bathroom. He told our colleagues, hiding his irritation that his ex-girlfriend was keeping him from the workshop, and began to drive.

As he drove I rapidly worsened. Soon I was crying out in pain, clutching at the door and the seat, my body stretched and rigid. Ron kept glancing at me with increasing alarm. I remember gasping and groaning, and he told me later that sometimes my eyes rolled back in my head and my tongue stuck out unnaturally, and I looked deathly white.

At some point he pulled over and called 911. Immobilized by whatever this was, now overwhelmed with pain, I wondered if I was going to die. I could barely speak, but I could muster a few words here and there. I tried to plan what I would say if I sensed myself going unconscious. I wanted to say something about love: loving Ron, loving everyone. I thought about death more often than most people, I was sure, and for years I had hoped that my last words and thoughts would be about love. Now I prepared myself to make it happen.

The operator told him an ambulance was on the way, and to cool me down by dipping cloth into a water bottle and putting it gently on my face, letting cool water run down my skin. She said to give me just a little water in my mouth, and to keep me calm. He did all of this. The cool water helped.

Within seconds, it seemed, we heard sirens and an ambulance pulled up, and two sturdy, uniformed young people took over, seeming to know exactly what to do. They somehow moved me onto a gurney and into the ambulance, and Ron abandoned the County truck to ride with me at my request, and I asked him to hold my hand even though we were not technically dating. The young paramedic next to me put in an IV and I began to feel better, but after a few minutes she shouted up to the driver that my blood pressure had dropped to 80 over 40, and without another word he turned on the sirens.

Ron told me later that when those sirens went on, he wanted every car within view to pull the hell off the road, and it angered him when they didn’t get quickly out of the way. Forever afterwards, he and I would always remember that moment inside the ambulance when the siren turned on. We try to pull off immediately whenever we hear one.

My blood pressure stabilized. We arrived at the hospital. They wheeled me into my own room and my body relaxed and the pain subsided, and Ron sat next to me with my hand in his, holding my gaze while tears squeezed out of my eyes.

A doctor came in with a kind, wry smile that indicated this was not the most serious thing he had encountered that day, even that hour. It appeared I’d had a touch of heat exhaustion. The feeling that you have to go to the bathroom, he explained, is often just a sign that your body is under great stress. Diarrhea is a symptom of a myriad of problems–that’s why many people die on the toilet.

Was I dehydrated? the doctor asked. No, I replied, bewildered. I’d drunk the same amount I always drank in the morning, maybe a pint of water, and I’d been sipping Gatorade from my water bottle, although not abundantly, since there was no bathroom at the field site. I hadn’t done anything strenuous; I’d been sweating no more than anyone else. I’d eaten perhaps a little less than usual that morning. But it was the first day of my period, and we all agreed that that, plus the heat, must have overwhelmed my body.

After an hour or two of IV fluids and electrolytes, I was discharged and went home, promising the doctors and Ron and, later, our boss, to get lots of rest and take good care of myself. I returned to work the next day, embarrassed. Years passed, and the incident faded from our minds, except occasionally. Whenever something reminded us of it, Ron shuddered and recounted how deathly strange I had looked, how terrified he had been.

Now, stuck in traffic with me squirming and gasping next to him in the front seat, we both recalled the incident again. I was beginning to cry out in pain, and the agony of my gut and the need for the toilet and the feeling of overheating was all too familiar. “Maybe we should go to the hospital,” I panted. We were inching toward an intersection that marked the last easy turn to St. Mary’s.

As we approached the intersection, we made a final decision: better safe than sorry. Ron took the turn. Then nausea overcame me and I asked him to pull over, and as he did I opened my door just in time to vomit on the street.

Shaking, I collapsed back into my seat and managed to pull the door shut. I sipped some water from my bottle. And I began to feel better.

Throwing up seemed to have done the trick. On its own, without an IV this time, my system began to quiet down. My pain was subsiding. Cool sweat suffused my skin and I sensed some sort of detox taking place, like a fever breaking. I cautiously told Ron we could go home, after all. The episode seemed to have passed.

Resting back in our apartment, we dissected what had happened. Could I somehow have become dangerously dehydrated today? It was summer, but not a hot day–the high was 74. The only unusual thing that had happened today was acupuncture.

I kept returning to this fact. It was uncanny that a crisis-level episode had happened within minutes of finishing an acupuncture appointment. Nothing like this had happened after the first appointment, but still, today’s incident left me with absolutely no desire to return a third time.

For months, I had been hearing that acupuncture could help with gut problems, and in a way this incident confirmed that it might. Because if acupuncture can help the gut, it stands to reason that it can also hurt the gut. Today’s crisis seemed to prove that, indeed, acupuncture can affect the gut profoundly. Unfortunately, it had affected me profoundly in a dangerous way.

After everything, these were my conclusions: 1) that acupuncture can affect the gut, but 2) that the woman I was seeing was not the acupuncturist for me. She must not know how to use her powers to help my colitis. Perhaps I would try acupuncture again in the future, but it would need to be with someone else.

Is It the Fiber, or the Carbs?

My latest bout of illness raised a question for me about diet. It looked like I’d be using diet for the long haul, with this disease, sticking to the Specific Carbohydrate Diet or something similar–it seemed clear that diet was working. But my question was, Why was this diet working? Specifically, was the SCD working because I had cut out fiber, or because I had cut out complex carbs?

The problems I’d had this week seemed to relate to added fiber. I had eaten peach skins, carrot skins, and the rind and seeds of a squash. All were well cooked, but they had still scraped against my colon and caused me to bleed, so I was now going back to mushier foods.

The SCD folks would caution that it’s not all about scraping. The most important part of the diet is avoiding complex carbohydrates, meaning grains and most legumes, because those feed the “bad” bacteria that were supposedly in my gut. Those bad bacteria were releasing toxins, and my colon was inflamed to combat those toxins. By starving the bad bacteria of carbs, I could give my gut a chance to become uninflamed and heal itself. The diet was largely working, so I’d been inclined to think the SCD people were probably right–and they had decades of experience to back themselves up.

But at the same time, ever since meeting with Alison, I’d been reading books by the suite of popular doctors who recommend against the animal products so prevalent in the SCD. These are doctors like Ornish, Fuhrman, Klaper, and Barnard. For health and longevity, and also for autoimmune disease, they essentially recommend going vegan because animal products have so many inflammatory properties. Their philosophy worked well for Alison, and it was almost the opposite of the SCD.

The two philosophies are simple:

  • SCD: The problem is a bad colony of bacteria in your gut, which releases toxins and causes your inflammation. You have to starve the bad bacteria of complex carbs while gradually replacing them with good bacteria from probiotic yogurt.
  • Vegan: The problem is inflammation in general. Refined grains and animal products are inflammatory, causing various autoimmune diseases like colitis to develop. If you go off these inflammatory foods, the inflammation in your whole body will go down, including in your gut.

I wondered: What would happen if I stayed on a low-fiber diet, avoiding scraping my intestines, but followed the vegan doctors instead of the SCD?

It certainly was tempting to try. A vegan, whole-foods diet would be easier than the diet I was currently on. It would have the added bonus of many anti-cancer properties–these doctors are adamant that cancer can be prevented through their dietary recommendations. I would be able to eat grains again–just not refined grains, and I’d need to prepare them much more carefully than in the past, soaking beans a long time and making my own bread and possibly avoiding gluten still. But I wouldn’t have to get so much protein from meat. And I would feel so much less stressed about doing long-term damage to my body.

As I began tapering off the prednisone, I was forging a new plan.

  1. Return to the simple Specific Carbohydrate Diet I’d been on before my recent relapse. I would keep the avocados and bell peppers, but no more peach peels, carrot skins, or squash rinds or seeds. I would get my gut back to the semi-healthy state of a week ago.
  2. Experiment with SCD legumes. In the later stages of the SCD, lentils are allowed, and some beans. I could try eating ones that were thoroughly cooked and as soft as possible–red lentils, for instance, cooked into mush.
  3. If my body didn’t tolerate the lentils, stick with the SCD as it’s written, without cheating anymore or jumping ahead to any more future stages.
  4. BUT, if my body did tolerate the lentils, experiment with some non-gluten grains that are forbidden by the SCD but are recommended by the vegans. Brown rice, for example.
  5. If my body couldn’t handle the grains, stick with the SCD, but with lentils substituting for meat. This would keep me much more vegan than I would have been normally.
  6. BUT, if my body could handle the grains, transition to the kind of vegan, anti-inflammatory diet recommended by the suite of vegan doctors.

If my body could handle the grains and legumes, I could conclude that the benefits I’d been getting from the SCD were mostly from its low fiber, not from the absence of complex carbs.

Thinking back to when I had started the SCD, I had already been on a low-fiber diet for a month or two beforehand. It was only when I started the SCD that my symptoms had seemed to improve. That pointed strongly to the SCD being effective–to the problem, in fact, being my gut bacteria colony. By doing this experiment, was I in denial yet again? Was I just trying to squirm my way out of the SCD, first by cheating last week, now by rationalizing legumes?

I didn’t think so. It wasn’t like I was asking for deep-fried cheese curds, for God’s sake. A vegan, whole-grain diet would still be life-altering. I wasn’t being lazy; I was still willing to work and cook and plan. It was just that all these vegan doctors were convincing me that maybe their way could work, too. Before I committed to one or two years with no grains–and making Ron a paleo with me–it seemed worth exploring just a little bit more.

The Dreaded Prednisone

It was nearly two weeks since I’d started the dreaded prednisone, and the results were in. And they were mixed.

By the end of my first week on the drug, I could see clear improvement. There was no denying it. Within a couple days, I had a normal BM, one of the only ones I’d had in the seven months since my symptoms became severe. Then it happened again. Within several days, normal or almost-normal BMs were happening more often than not. I began wishing I had tried the drug much sooner.

It was interesting how this normalcy affected my mind. After just a few days, I began forgetting what it was like to be sick. For months, I had experienced trepidation each time I ventured to the bathroom, along with fatigue and pain in between. Now my trepidation receded like a passing fog, or like a sunny day in Portland. When the clouds part in the midst of Portland’s interminable, rainy winter, it’s as if heaven itself comes down to visit Earth: Light floods everything and the glistening hills shine with bright shades of green, and everyone smiles to themselves and each other and the euphoria is such that you easily forget how depressing things have been for months on end.

That was happening to me. In the bathroom, I started assuming things would be more or less normal–not as perfect as my BMs had been for my entire life before now, and with perhaps a little blood, but normal enough not to worry. Instead of thinking incessantly about my disease, my thoughts were free to turn to the move to Portland, our good-byes with our friends, and the joys of summer.

I began to wonder: Had I really imagined this whole thing? Was it really possible to have urgent, bloody, explosive diarrhea every day for months? It seemed far-fetched somehow.

In other words, for me, one of the side effects of prednisone was denial.

I was still on the Specific Carbohydrate Diet, and steadily adding new foods every couple days, like I had been all summer. Red and green bell peppers. Cooked peaches, their mushy sweetness a sensuous treat. Raw avocado, a true taste of summer, bringing me back to the fleshy green parachichis dropping abundantly from the trees in my Tanzanian village. With each new addition, things still went fine, that first week, my BMs still often normal, thanks to the miraculous prednisone.

Ron began to join me on the diet, another enormous relief. For the first time in months we were cooking together and sitting down to meals again, and I wasn’t alone. Everything was grand.

The prednisone wasn’t perfect, but I was optimistic. Maybe this jump start would actually work. Maybe, like Josh, I could soon go off the drug but retain all this progress.

Then, a week-and-a-half into my two-week experiment, I began to get cramping. And more blood. And diarrhea. One evening I tried to watch Ron play a Frisbee game, but only caught the tail end because I was stuck on the toilet for a half hour. When I did make it to the game, I felt bloated and stressed, and all my worries and despair from this year came flooding back. My disease was once again interfering with my life–and this was with the prednisone.

Back home, I puzzled it out, once again turning my thoughts to my disease. Pretty quickly, I thought I understood the problem. It was not the prednisone, but the diet: I had begun to cheat a little. I had recently cooked yellow squash with the rind on, and left the seeds in, too. They had looked so small and soft and squishy, cooked, and everything had been going so well. I had thought maybe I could skip a couple stages of the diet now, eat something more advanced. Likewise, I had begun leaving the peels on my cooked peaches, and–I now remembered–I hadn’t peeled the carrots the last time I cooked them, either. It was all so much easier this way, and for Ron, as well, now that we were cooking together. I didn’t want to burden him any more than I had to. I thought maybe these extra cooking steps weren’t really necessary, anymore.

When my gut problems started up again, the prednisone had been working steadily for a week and a half. The only real change was the diet, so that had to be the culprit. All this sudden, increased fiber, albeit cooked, was probably scraping my colon. It was inflaming me and causing me to bleed.

I sat looking out at the lake, my face somber. I was still sick, after all. I was not like Josh, who could weather this disease with minimal effort. The prednisone was not my cure-all.

I would have to go off the fiber again, go back to the rigors of before. Apparently all that carrot peeling and seed removing had been working.

And there was my silver lining, which became more comforting the more I turned it over in my mind. Because this relapse meant that the diet I’d been so rigorously following had been doing something, indeed. I had thought so–known so–ever since my symptoms had improved at the beginning of the diet, but with the prednisone I had quickly forgotten the diet’s importance. I had wondered, for a week and a half, if perhaps all my efforts in the kitchen had been silly when a couple pills could do so much more.

These new symptoms demolished that idea. I needed a special diet. The only reason the prednisone had been so effective–the only reason I’d been having semi-normal BMs–was that I had also been on the diet.

I cannot overemphasize the importance of this revelation. It countered what I had first heard from my first Western doctor: that all I needed to do, in terms of diet, was just be “sensable.” It countered what I had also heard from my more recent doctor, who was more thoughtful and who I actually liked: that “There is no good evidence that dietary changes will reduce the inflammation from your proctitis.” I had arrived at the SCD not by listening to these Western doctors, but by doing my own research (which Carrie, another doctor, had discouraged) and by reading the accounts of other patients and holistic practitioners. And this relapse in symptoms, which occurred while I was on the prednisone, virtually proved the effectiveness of my diet.

It was actually lucky that I had gotten lazy about fiber. If I had not been lazy, I would not have relapsed, and would not have seen how crucial my diet was to my healing.

The SCD, like the prednisone, had not completely cured me of symptoms. But it, like the prednisone, had improved my symptoms. It had dramatically improved my quality of life. Truly, doctors did not know everything.

I imagined what might have happened if I had simply listened to my doctors, perhaps just avoiding raw salad and maybe dairy. My efforts in the kitchen would not have been nearly so rigorous. The prednisone would have been much less effective; my doctors would next have encouraged me to try immunosuppressants; and, like many other patients, I would get sucked into the cycle of more and more powerful and dangerous drugs.

This episode was a clear message: Stick with the diet. It is doing something. You need it.

I began to taper off the prednisone after thirteen days. This was one day shy of the full two week course my doctor had recommended, but I was suddenly impatient to get off it. I was beginning to notice its negative side effects–my stomach was bigger than it had ever been in my life and felt distended and bloated, and now and then I got adrenaline rushes that couldn’t seem to turn off. (Early in the prednisone course, I had missed one full night of sleep with adrenaline pumping through my veins.)

My plan was to taper off the drug for the next ten days, at which point I would be completely drug free. Then I would see where my symptoms stood.

Acupuncture Brings Release

Despite the ordeal with my colitis, the rest of life was moving inexorably forward. I wished I could put it on pause while I sorted out my disease.

After eight years in Madison, Ron and I were moving to Portland this summer. For years, I’d been envisioning this move, and now the time had finally come. It was early July, 2014. Our lease ended in mid-August. Soon we would pack our cats and most precious possessions into our little Hyundai, put the rest of our stuff in a moving pod, and drive across the country. We had a bucket list of things to do: good-byes with friends, Portland job-hunting, Portland house-hunting, figuring out how to transport me across the country with my special diet, setting up health care in Oregon…

I was the impetus behind all this trouble. Increasingly over the last few years, I had missed my home and family. In the spring I had second-guessed myself: Was this the right decision? Was I just succumbing to a restless spirit? Was there some other change I could make, some easier change besides uprooting Ron and the kitties, leaving all our friends, and losing our lakeside lifestyle?

But whenever I pictured staying, it felt stagnant. And when I pictured living in Portland, with its green hills and the ocean and Columbia Gorge and desert nearby, with my family just minutes away, my heart soared. Portland got to me in ways that Madison never had. The sermons and hymns at Portland’s First Unitarian Church made me cry. So did Mom’s contra dance community. The great trees of Oregon were my spiritual teachers. The ocean was where Dad was buried.

I’d been talking about this for years, and Ron was game. We were going.

As the move approached, I felt sad but also excited. The housing market looked atrocious and we didn’t yet have jobs or many Portland friends, but I felt inexplicably sure that my heart wanted me to do this. Following my heart had always served me well.

There were things we would not miss about Madison. One thing in particular. By now Ron and I had both quit our jobs at the Wisconsin Department of Natural Resources–Ron had quit last year to substitute teach, and I had quit just last month. I had waited till my crowning achievement occurred: the publication of Field Guide to Wisconsin Streams, the book Ron and I had authored together. It was satisfying to hold the book in my hands. I don’t remember how I first got hold of a copy–Did I venture back to the office, braving the scowls of people we had alienated, and pull it out of a box?–but I remember the glossy cover, and flipping through its smooth, untouched pages. That moment is every aspiring writer’s dream.

This book had been the bane of our existence for years. Our excitement at the product was marred by the ordeal we’d been through to get here. The book had actually been finished months earlier, but I had held onto my part-time position until now, when the book was physically in my hands, fearing that if I quit before this moment, it might never actually be published. I made sure to stay in touch with supervisors and the publisher via email, answering any questions that arose and helping the project along. After everything we’d been through, I wasn’t about to leave this to chance.

We had ultimately lost the battle to have our names placed first on the cover. We both agreed that my career, especially, would be hurt by this appalling agency decision. I had written the vast majority of the book, done the vast majority of the work on the project, held the official title of Project Manager, and pushed things forward countless times when the third author, a higher-ranked colleague, had repeatedly stalled and erred. Despite his incompetence, he had ultimately threatened to sue the agency if his name was not placed first on the cover. Along the way, he had also actively sabotaged our careers, attempting to block us from direct contact with other biologists, berating us for made-up offenses in meetings with supervisors, and claiming to have done pieces of the book that we had in fact done. He was unionized while we were not, so unless I hired my own attorney, I had no one to officially advocate for me.

So holding the book in my hands was bittersweet. My joy was mixed with outrage. Because of the author order, people were already referring to the book as the “Miller field guide” rather than the “Songer field guide.” The agency’s recent press release devoted much more space to the third author than to me or to Ron.

Even now, preparing to leave the state, we were still battling with this man for due credit. In July the three of us were invited onto the Larry Meillor Show, a popular Wisconsin Public Radio show focusing on natural resources. In a typical sabotaging move, our co-author attempted to reschedule the appearance at a time when only he would be available, so that Ron and I could not appear on the show. A flurry of emails ensued. We won a small victory when a former supervisor vouched for us: Ron and I would appear on the show, alone.

The show took place on July 9th. I was in the midst of my experiment with prednisone, and I thought the drug might be helping a little, but I couldn’t be sure. I was still consistently having three bowel movements a day, each with bloody diarrhea. (Oh I’m sorry, did you forget that I talk about poop a lot here?)

During the show, my gut cooperated. For an hour we forgot about the authorship conflict and spoke excitedly with Larry about Wisconsin’s stream wildlife, freshwater mussels and crayfish and aquatic plants and trout. We left beaming. I would later write about it all in my writing-and-life blog, katiesonger.com, carefully leaving out most of the conflict or any mention of my colitis.

After the show, I headed across town to my first-ever acupuncture appointment.

I’d heard that acupuncture can help with gut problems, not to mention stress and anxiety, and I’d been having plenty of all of the above. I was excited to give this a try. A serious, slightly awkward white woman led me into a dark, soothing room. She had straight, shoulder-length hair and a nervous smile. She laid me down on a table with comfy pillows, and I told her about my illness and my history of inflammation: my painful knees, the skin flakes on my face, my Raynaud’s disease. She left me for a few moments while she prepared her needles.

Image from priyanphoenix at Morguefile.com.

I sat up and looked at a drawing on the wall. It was a diagram of the human body with energy meridians, lines that supposedly run through the whole body and connect disparate parts to each other. I wondered how scientific and real these “meridians” might be.

The woman came back and gently tapped needles into me. With each tap I felt a slight sting, then a subtle heaviness, as if a warm relaxation emanated from the needle’s tip. I looked down at myself. Needles poked out of places nowhere near my colon: my feet, my fingertips, my calves.

She left me alone, turning off most lights so that the room was dark and quiet. She had turned on strange music, some kind of bells or gongs sounding in different tones and intervals. I closed my eyes and tried not to move or to think of the needles in me. Each time a bell sounded, it seemed to resonate through my body in a wave. After a few moments I felt myself relax. Then I began to cry.

There was no particular thought that made the tears come. They came with force, all at once, and I suddenly found myself sobbing there on the table, overwhelmed with some nameless grief, confused about its source. Perhaps it was the pent-up frustration and anger over the injustice of the field guide, my powerlessness to stop a powerful man from taking something from me that could have been so uplifting and joyful. Perhaps it was the loss of this spring, a time when Ron and I could have, should have, been enjoying life and trying for a baby. Or maybe, like so many things, it had to do with Dad. Whatever it was, the thought of myself crying here in the dark with needles poking out of me just made me cry harder; I sobbed and sobbed and thought about how ridiculous this seemed, that I was crying here for no reason. And yet as I cried it felt so good, as if something buried in me was being released.

The woman came in to check on me. “I’m sorry,” I blubbered. “I don’t know why, but I’m crying.”

She smiled, unruffled. “That happens sometimes.”

She left and the tears continued. Eventually I settled down, like a baby crying herself to sleep. Afraid to move with the needles in my arms, I left the tear tracks on my face to dry. I looked up at the ceiling in the dark, blinking the water out of my eyes, listening to the chimes and gongs. They sounded gentle and yet firm, insistent, otherworldly.

My body felt drained and peaceful. Somehow, intuitively, the tears made sense. After all the stress of recent months, perhaps I needed this now, this dark, empty space.

When the woman returned to remove the needles, I asked about the mysterious music. She explained that it was Tibetan singing bowls, played by monks. I made a second appointment for a week from today. I wondered if the tears would return each time I did acupuncture.

Did Stress Cause My Colitis?

When I met with Alison to talk about our mutual illness, she asked me a powerful question: “Did you have a lot of stress, leading up to the time when your symptoms began?”

Others had asked this too, but it felt different coming from them. Up to now, whenever someone mentioned the possible connection between my emotions and my illness, it had always made me angry. I hid this from whoever was talking. I would just nod and smile at whatever nonsense they spouted: Had I heard about how introversion causes gut diseases? Or how wherever we hold tension is where we get sick? Wasn’t it interesting how their friend with colitis was also very cerebral, just like me?! I loved all these well-meaning people, and because I loved them, I didn’t yet know how to handle their well-meaning, but totally off-putting, comments.

I will write more about this later.

What I did know was that when Alison asked her simple question about stress, I wasn’t put off. She shared my disease. There was no hidden blame in her question, no otherizing. This gave me space to really think about the question itself. And the answer came easily, with relief: Yes. I had been incredibly stressed in the two years leading up to my illness. Recently, I had been thinking so much about diet that I hadn’t given much thought to this aspect of things.

I gave Alison a slow nod, and told her my story.

2012 had started off happily. It was going to be a great year. In January I dropped down to part-time at my job to fulfill the life dream of writing a memoir. After almost a decade, I was finally going to write about my village in Tanzania, my years in the Peace Corps, and the beginnings of my romance with Ron. The stars had aligned for me to do this project now and I was thrilled. I couldn’t wait to write that story! And also, Ron and I were going to get married in the fall. This was going to be my big, romantic, Me Year.

Dad in Hospice

Except that shortly after I began writing, the stars fell completely out of alignment when my dad was diagnosed with stomach cancer. I began spending all my time on that instead, calling him and his caretakers and flying back and forth between Madison, Wisconsin and Gainesville, Florida, where he was hospitalized. His disease got worse and worse despite all of my sister’s and my and his siblings’ efforts to help. In June he was declared terminal and put into hospice.

During this rapidly unfolding tragedy, my commitments back home were also ramping up, not down. There was the approaching wedding with all its logistics. Suddenly, because of Dad’s cancer, Ron and I had no time to contemplate things, to gather ourselves and examine our relationship before taking the plunge. We barely had time to plan the wedding in the first place!

On yet another front, there was trouble brewing at work. Ron and I worked together at the Wisconsin Department of Natural Resources. We’d been hired there just after finishing twin master’s degrees in soil and water conservation, and for years we’d been working on the same projects, even sharing a large cubicle when I was in the office. (We called it our double-wide.) It was fun to work together…but recently, a higher-ranked colleague had begun stealing credit for our hard work.

This was maddening, and incredibly toxic. It happened like this: We would complete our pieces of a project and ask this colleague if he had completed his own pieces. He inevitably had not. We would then try all sorts of tactics, in a series of meetings and interactions over the span of weeks, to get him to do his work, including offering to do it for him. He would insist that “his” pieces be reserved for him, but then he would not do them. Finally, we would go to supervisors to make him finish his pieces. Supervisors, too, would spend weeks getting after him to finish, and eventually, finally, he would. The whole process would take months, delaying each project. Once one of his pieces was complete, the cycle would begin again. This year one of our main projects was finally nearing completion, but this colleague was brazenly insisting that his name remain ahead of ours in the credits despite his various delays, his general incompetence, and the fact that we had done virtually the entire project without him. When we protested to supervisors, we discovered that because he was unionized and we were not, there was nothing the agency could to do. If we wanted full credit for our work, we would have to hire our own attorneys. No one could discipline him or advocate for us, although supervisors were sympathetic.

As this toxic situation dragged on, Ron and I oscillated between venting our anger to friends (who grew weary of our repeated complaints) and deciding not to mention work to each other at all. It was just too infuriating to think about.

Finally, alongside all these other stressors, in 2012 there was Reach Out Wisconsin. Reach Out was–and is–a civil political dialogue group that we had co-founded in 2011, back when our personal life had been carefree and full of extra energy. Following the election of Governor Scott Walker, we had joined with a local Republican couple to foster respect and understanding in Wisconsin’s divided political scene. Each month, we hosted a public forum on a “hot” political topic like abortion or gun control, encouraging attendees to talk civilly with each other, which they largely did. It was rewarding and educational…but the problem was, in 2012 it was becoming a success. Forums regularly had 30-60 attendees, and the media had begun to discover us. In the spring and summer, we got a flurry of requests to interview for local papers and TV news stations, and a few times were on Wisconsin Public Radio or NPR. It was all very exciting–but it was happening at an impossible time.

All year, in 2012, I felt the reins of these four galloping horses in my hands: Dad’s cancer, the toxic work situation, the wedding, and Reach Out Wisconsin. Each of these issues, on its own, would have been very stressful, but bundled all together they were almost impossible to deal with. And while any of the four would feel urgent in a normal year, the cancer of course eclipsed them all.

All year, I needed every ounce of my mental, physical, and emotional capacity to deal with the constant bombardment of stress.

We were married in September, and Dad passed away three weeks later, in October 2012. That winter, I collapsed in on myself. At work I returned to full time to build up my savings again, but I stepped down from everything else. I slipped away from my leadership role in Reach Out Wisconsin, attending forums but keeping to the sidelines. I stayed home during most social engagements. I needed to rest and absorb everything that had just happened.

I welcomed 2013. I needed a reboot. Maybe this year could be “my year.” I dropped again to part time to begin writing, although I discovered that my memoir plans had changed. Instead of writing about Peace Corps, I needed to write about Dad. His death had brought my complex relationship with him to the forefront of my mind: his alcoholism, his depression and anxiety, his bouts of anger. As the lake froze out the windows and the bright, clear winter light shone into our warm little apartment, I began writing the story of my childhood and of the healing that finally took place between Dad and me as he lay dying. It was a deep, intimate, all-consuming project. And it was challenging. In telling my story, I spent the year reliving buried traumas from my childhood.

That year, my stress was not as frantic and urgent. But a new kind of stress rose from deep within me, like some dark demon that had been unearthed.

Ron and I began to have terrible fights. Now that the wedding was over, we were talking about having a baby, and there is nothing like considering a baby to bring up all the anxieties in a marriage. The anxieties were mine, and they were heightened as I wrote about Dad.

A central theme of my childhood was the unreliability of my father. He would fail to show up for weekends together, or would fall apart emotionally without warning, triggering crises involving bouts of his tears and anger, and sometimes rehab or hospital psych wards. Ron is very different from Dad, except in the best of ways. Both are (or were) sweet and intelligent and caring and funny. While Dad was anxious and could not sit still, Ron is gentle and laid back. But he slightly resembles Dad in one way that triggered me in 2013. Ron is famously late and slow, prone (back then) to producing Valentine’s Day cards in June or Christmas cards in March. He would forget groceries I reminded him about in six different ways. My father’s unreliability was vastly different from Ron’s, but every time Ron forgot something or showed up late, this year it sent me into a tailspin of stress and fury. What if I couldn’t count on him to help me parent a child? What if, like my mom, I’d have to essentially raise my children alone?

We fought and fought. By late 2013, I sought out a counselor to sort out my feelings. The fights began to gradually resolve, and by the time we went to Spain and Morocco in March 2014, Ron and I felt closer than ever. We were ready at last to take the plunge with a child. But in the meantime, by that winter I had developed colitis.

My doctors said that science has shown conclusively that stress doesn’t cause colitis. But I firmly believed that something had caused my colitis, and that something, whatever it was, must have happened recently, because my gut had been healthy my whole life. (I’d always had just one bowel movement a day, and not to toot my own horn or anything, but they were good ones.) Science has shown that stress is linked to inflammation in general, for instance here. And some scientists apparently do think there is a link between stress and UC onset, for instance here.

I knew many people whose illnesses–celiac disease, heart conditions, autoimmune disorders–occurred following times of peak stress in their lives. They tended to feel that the stress and the illness were indeed linked. Was it possible that the same thing had happened to me?

The Inner Skin

Here is a mind-bending question for you: When you swallow a piece of food, is it really inside your body?

Alison’s comment had gotten me thinking. “If you think about it,” she said, “your skin and your colon are connected.” The skin of the face is connected to the lips, which are connected to the mouth, which leads to the esophagus, the stomach, the intestines, the colon, the rectum, the anus…and finally, back to the outer skin of the body! (The leg bone’s connected to the/hip bone…)

Your digestive tract is a long tube passing through you. Through this tube, you interact with the food you’re digesting. Some molecules of that food pass all the way through you without ever crossing the walls of the tube–without ever entering your bloodstream. Those molecules go in your mouth and exit your butt and, voila!, they are back out in the world again.

Looking at it this way, your digestive tract is like an inner skin. Your outer skin is covered in bacteria, and interacts constantly with the outer world. Skin absorbs nutrients and toxins, and excretes toxins as well. Likewise, trillions of bacteria inhabit your inner skin, your colon and intestines, and these, too, are porous layers that take in and remove substances.

The digestive tract, then, is the site of a mystifying interface: the distinction between what is “me” and what is “not me.” It is the boundary that makes this decision, constantly, for your body. And it is a fuzzy boundary. Because who’s to say where, exactly, the boundary ends? Are my gut bacteria a part of me? Their populations fluctuate with my food and toxins and hormones, like independent colonies living on the surface of a planet, and yet they influence my health profoundly. At what point does a molecule of food become a part of me: when I swallow it, when it begins interacting with my stomach acids and gut bacteria, or only when it physically passes through the lining of my digestive tract and into my bloodstream?

For me, this thought elevates digestion to a profound and almost magical act. Likewise with breathing, another wondrous interaction between my body and the world, as I take in air from outside myself and bring it into my body, where some of it enters my bloodstream and becomes a part of me.

My mind opens when I think this way. I see the way my body is a part of the world, not apart from it. I interact constantly with the things around me, the things I touch and take in, the molecules of dust and leaves and tomatoes and beef and Cheerios and cat dander and plastic. I see the awesome ability of my unconscious, automatic systems to distinguish (I hope) what should become a part of me and what should not, the hard work my skin and lungs and digestive organs do to protect me and build me and keep me alive and healthy. I am made of the world, and I am part of the world.

Evidence vs. Experience

I was having trouble believing something my doctors said. According to them, I only had proctitis. My disease was supposedly only in the rectum, the farthest-out portion of the colon. My colonoscopy in February and my sigmoidoscopy in May had shown the rest of my colon to look perfectly healthy, with a smooth, pink lining and tidy little red veins. It looked the way a colon is supposed to look. (If colons are “supposed” to look like anything. Is that the right phrase? I’m not convinced we were designed to look at each other’s colons.)

But I kept wondering if the doctors were missing something. For one thing, sometimes my symptoms had been far more severe than typical proctitis symptoms. For another, it was in the rest of my colon that I’d been feeling all sorts of sensations…even as my energy and strength had returned.

from https://quizlet.com/40177078/anatomy-2-digestive-system-flash-cards/

First there was the gurgling. It occurred often, and always in my upper abdomen, where I was sure my transverse colon lay. Prior to studying digestive anatomy, I would have just labeled this area “my stomach,” but the largest section of the colon sits just below the stomach. I could frequently feel, and sometimes hear, this gurgling. It was like when you suck the dregs of a milkshake through a straw and a lot of air passes through. I could feel that same gurgling, slurping movement of air inside me.

Then there was my persistent, mild, acute pain, always in the same place: the upper left corner of my abdomen. Here the transverse colon takes a sharp turn before descending to the rectum. I suspected this corner was inflamed, and food was having trouble passing through.

Every time I raised this suspicion with doctors, they said my pain was likely referred pain–pain felt in one area of the body but originating in another. Perhaps the inflammation in my rectum was somehow referring to my colon. Since my colon looked normal in the painful spot, there was no evidence to support my suspicions.

I found this response irritating. What were my observations and experiences, my symptoms and my feelings of what was happening in my own body? Were they not also evidence? And I didn’t know much about referred pain, but I was suspicious of this answer. A little Googling told me that referred pain is often diffuse, a radiating pain, for instance the way women might feel a heart attack in the neck, shoulders, or back. My pain was acute. It was specific. It did not make sense, intuitively, that the nerves from my rectum all pointed to this one spot in my colon.

Whatever was visibly happening in my rectum, I felt sure that it related to something invisibly wrong farther up. The whole system was out of whack. My reading was teaching me that the body’s systems are an integrated whole–the rectum isn’t just an isolated little pocket, independent of everything else. Western doctors tend to think in pieces, compartments, and silos. Our doctors are often specialists, and the doctors treating me specialized in digestion. Based on their calculations–no visible inflammation equals no problem–my colon had to be just fine. I felt these calculations were blinding them. How much did they know about the whole body–for example, about autoimmunity? About systemic inflammation?

Eastern medicine looks more at the whole body. I was beginning to think that way, too.

The Energies of Suppressed Diseases

Nothing dramatic happened when I started the dreaded prednisone. Not at first, anyway. A pill; a swallow; I moved on with my day. I tried not to think about it, and to just keep eating the Specific Carbohydrate Diet and living my life. I would have to wait and see what happened. This disease was a constant exercise in patience.

Meanwhile, one evening I walked to the park to watch Ron play Frisbee. I had added a daily walk into my life, now that my strength had returned, and this evening I had an actual destination. As I approached, I felt a thrill of excitement. Young people ran and dove in the dusty field, and along the sidelines their teammates stood sweating and cheering, chugging water and swatting mosquitoes away from tanned legs.

Ron’s Frisbee team

These were my friends. This was my old team, with which I’d played for years, before my chronic knee pain had forced me to quit three summers ago. I hadn’t seen them much since. Not only had I quit, but life circumstances had gotten in the way, creating a series of sad reasons why I had already been isolated for years before even getting colitis. First, in the summer of 2012, I was too busy caring for Dad and his cancer to be social. He died in the fall, and in summer 2013 I was still grieving him and not ready to see many friends. Then, this past winter, I’d been relieved to find myself ready to be social again and eagerly looked forward to spring and summer…only to fall sick myself. Now it was the third summer in a row that I was largely spending alone.

So I greeted the team happily, relieved that at last I had the chance to come out. I cheered for the team and got caught up in the energy. Tonight I felt strong and healthy, kicking off my sandals and standing barefoot in the grass. Soon after I arrived, Ron began to score; he scored the last three points and brought the team up from two points behind to win 11-10. I felt like a good luck charm.

Someone suggested heading to the Great Dane Brew Pub. This was typical–the Dane sponsored the Frisbee league and gave each team a free pitcher of beer after each game. (People don’t bat an eye at this tradition in beer-guzzling Wisconsin. In that state, alcohol is present everywhere from the student union building to church potlucks. I once tried to host a “dry” Christmas caroling party, but was thwarted when one friend brought a pony keg and another made the hot chocolate “Russian.”)

I wouldn’t be able to drink with the team tonight, since alcohol is forbidden on the SCD. But I whispered to Ron that I’d brought almond butter in case I got hungry. I could go to the Dane. “Katie’s coming!” he announced, and the others cheered.

Ron and I got into the car. When he turned it on, the stereo blasted a refrain from Tribe Called Quest, Ron’s pre-game pump-up music, and despite the happiness I’d just been feeling, a wave of sadness washed over me. The music flooded me with memories of many evenings like this, before my knee pain and Dad’s cancer and my colitis. Ron and I used to drive to the games and run onto the field together, often arriving late after our field crew job. With our fresh legs and speed, I would feel like the cavalry, coming to rescue the team. When my achy knees began to slow me down, playing wasn’t fun anymore–I was getting scored on. I finally quit altogether, but I had been absent so much since then that I’d forgotten what I was missing.

At the Dane, the waitress put a paper menu in front of me and I watched while everyone else talked for ten minutes about the food they were going to get. I was used to this by now. Until you’re on a restricted diet, you have no idea just how much time people spend talking about food. It made me sadder tonight than it had in a while. It was all so familiar, this ritual, which I had done countless times with this team in the past: playing a game then hitting the Dane, enjoying the food and beer here. I was sitting at the head of the table, so I had an excellent view of them as they chattered happily about reubens and West African peanut stew, and about the game. I felt utterly outside of it all.

By now, Ron had learned how hard such moments could be for me. He asked quietly if I was okay. I shrugged. I guessed I was not yet over the whole not-eating-with-other-people thing. I put on my best happy face as I watched, overlooked by the others.

Here I was, excluded not in one way, but in two. I couldn’t eat with the team because of my colitis, and I couldn’t play with the team because of my knee pain. What terrible luck, that both of these ailments had struck me separately, a double whammy of isolation.

The thought made me pause. After all, were these two ailments really separate?

In The Autoimmune Epidemic, Donna Jackson Nakazawa says that autoimmune conditions often come in clusters–people who suffer from one autoimmune disease are three times more likely to develop other autoimmune diseases. As an ulcerative colitis patient, I am more likely to develop rheumatoid arthritis, multiple sclerosis, or other related conditions. Nakazawa lists more than 100 diseases and disorders that have autoimmune components. The symptoms have similarities. They generally involve inflammation, and many include swollen joints, pain, redness and rashes, or itchiness.

Reading the book, I’d been unnerved to learn that I might develop more conditions, and surprised to discover that I had one of them already.

I have Raynaud’s disease. This disease causes the fingers and toes to turn ghost white in cold temperatures, as the body withdraws circulation. The whiteness is accompanied by stinging pain, and is followed by swelling, redness, and more agonizing pain when the fingers and toes are warmed again. I never knew this was a real, named disease until moving to Wisconsin and hearing a friend talk about it. It explained why, when I cross-country skiied with friends, they all seemed so much tougher than me. I had long assumed everyone else, like me, was powering through terrible pain in the fingers and toes for the first half hour of every foray. It turned out they weren’t.

Growing up in the mild climate of Portland, Oregon, I had only rarely been in temperatures cold enough to freeze my extremities. But when I came to Wisconsin and realized I had Raynaud’s, I remembered a trip to Portland’s Mt. Hood as a young child, where I had whimpered to my mother about the terrible pain in my hands as we got back in the car. She must not have known about Raynaud’s either. “All of our hands are cold, Katie,” she admonished.

Raynaud’s, as I learned from An Epidemic of Absence, is an autoimmune disease. If I’d been educated about autoimmunity as a child–and how could I have been?–I would have seen my Raynaud’s as a clue that I was susceptible to other such diseases as well. Raynaud’s was the first missed clue.

Now that I was educating myself, I wondered if my knee pain might also have an autoimmune component. It fit the bill: chronic, unexplained joint pain. It began around age twenty, and back then I assumed it was from my Kung Fu classes, which involved lots of crouching and squatting and kicking. Several years later, when the pain worsened, I thought it might be from walking around in flip-flops with no arch support for two years in Peace Corps Tanzania. Then my sister developed similar chronic knee pain at around the same age, which she first ascribed to her uphill bike rides to work. Both of us saw various physicians, naturopaths, and physical therapists for our knees over the years. Rest and ice and PT helped. But neither of us ever received an explanation or diagnosis, and both of us had to eventually stop playing sports altogether because of the pain.

By the time I quit Frisbee at age thirty-two, I was sometimes in too much pain to go up and down stairs. I clutched at the railing, wincing and hobbling like an old person. It took a year of physical therapy to build up the strength to walk a mile or two on flat ground without pain again. In the last couple years, slow-jogging two miles on flat ground was the most I could do without triggering more pain.

Food arrived at the Dane and everyone dug into their meals while I twiddled my thumbs and pondered all this. No one seemed to notice that I wasn’t eating, or even to notice me at all. Perhaps they were trying not to make me self-conscious. Depressed and bored, I carefully concocted a cheerful exit, forced a grin and a wave to everyone, and set off for home alone. Downtown Madison was only a mile from our apartment, so I could finish my daily walk now.

As I walked in the fading evening light, I continued mulling over this new thought about my knees and my colitis and autoimmunity. Then I realized that along with colitis, Raynaud’s, and knee pain, I even had a fourth likely autoimmune condition.

This one was on my skin. Around three years ago, the skin on my face had begun to flake. Just delicate little white flakes, like the remnants of a mild sunburn. I assumed my skin was just dry; it was the dead of Wisconsin’s bone-dry winter. I experimented with moisturizers. The flakes returned. Over the following years, I noticed them not just in winter but in summer too, which is hot and muggy in Wisconsin.

My “flakies”

As with my other strange ailments, I got used to the flakes. They were embarrassing–I took to looking closely at my face in bathrooms, worried about finding a flake dangling off my chin or out of a nostril. I used drops of water from bathroom sinks to smooth them away. I called them “my flakies” when talking to Ron. Before going out, I’d say, “Do I have any flakies?”

It was only now, with my new awareness of my autoimmune propensity, that I realized the skin flakes, too, could be some autoimmune condition. Psoriasis was a likely culprit. My dad had it, and my friend Alison, who also has proctitis, had it, too.

“If you think about it,” Alison said, “your skin and your colon are connected. Especially your rectum, where proctitis is.” The rectum is at one end of the digestive tract, connected to the outer skin of the body. The mouth is at the other end, connected to the skin of the face. Put that way, both my face and my colon are body surfaces–and perhaps both were inflamed.

I decided to make an appointment with a dermatologist.

I thought of something I’d read recently in Andrew Weil’s Spontaneous Healing, where he describes the way multiple diseases might relate to each other.

I read the writings of a great medical heretic, Samuel Hahnemann (1755-1843), the German prodigy and renegade physician who developed homeopathy… Homeopathy relies on very small doses of highly diluted remedies to catalyze healing responses. I disagree strongly with the many homeopaths who oppose immunization… Nonetheless, I…admire the system for its use of treatments that cannot harm.

One of [Hahnemann’s] most important teachings concerns the danger of suppressing visible symptoms of illness. Hahnemann used the example of an itching, red rash on the skin. Better to have disease on the surface of the body, he taught, because from the surface it can exit outward. Suppressive measures may drive a disease process inward toward more vital organs…

Hahnemann had this insight long before the discovery of corticosteroids, the very powerful anti-inflammatory hormones that conventional doctors now dispense without much thought for the harm they can do. Topical steroids are very effective suppressants of skin rashes and are now even sold over the counter in the United States. Again and again I see patients who become dependent on them… The disease process is not resolved but merely held at bay, gathering power…

What happens to the energies of such suppressed diseases? Where do they go?

Just as Drs. Weil and Hahnemann describe, my own doctor had pushed a corticosteroid on me: prednisone, which I was now taking. I had instinctively resisted it for months. If prednisone worked the way the doctor hoped, it would treat the symptoms but not the cause, and would prevent me from understanding my disease.

But Dr. Weil’s passage even goes a step further. By treating the symptoms but not the cause of a disease, we “suppress” that disease. The implication is that it could then emerge somewhere else in the body.

Was it possible that, all my life, I’d had some deep-down problem, something haywire in me that expressed itself first on that windy winter afternoon on Mt. Hood? Perhaps it emerged again later in my throbbing knees, then as a rash on my face, before striking my colon. If that was the case–if all these minor ailments were related to my colitis–then my current problem went far beyond an imbalance in gut bacteria. I was indeed prone to autoimmunity, and I needed to start thinking about that more and find a way to combat that, too.

Even though I was sad tonight, there was something comforting in all these thoughts. For the first time in my life, I was beginning to piece it all together and look at my ailments holistically. It was not random that I “happened” to have both joint pain and colitis, that I had felt excluded in not one but two ways tonight. It was not random, it turned out, that I happened to be the one with the flaky skin or the intensely painful hands in cold weather. I did not have some curse on me. There was no demon toying with me and giving me awkward physical conditions just to isolate me from my friends. These might all, in a way, be one single condition.

And perhaps Drs. Weil and Hahnemann were right. By suppressing an ailment in one part of the body, rather than treating it, the problem remains and just emerges elsewhere. I had never thought this way before about all my ailments, never tried to find the true root of the problem. It seemed like finally seeing it this way was a step in the right direction.

Day 27: Conclusions about the SCD

Today was Day 27 of the Specific Carbohydrate Diet, and my one-month trial was almost over. It was time to make some decisions.

I’d given this diet a month because Breaking the Vicious Cycle states that you need a month to know if it will work for you. Presumably, if it works, your symptoms will improve: less diarrhea, less blood in your stools, more energy. If after a month your symptoms haven’t improved, it’s time to drop the diet and try something else.

My symptoms had improved. One month ago, I’d been so exhausted that I often lay on the couch for days. Many days, I spent hours in so much abdominal pain that it made me nauseous. Nowadays, I only rarely had pain. It was almost two weeks since my last day of fatigue. I had energy again! I could finally participate in summer! My writing conference was fantastic!

Two days ago, Ron and I had canoed across the lake. The air was warm and humid, the lake smooth as we slid the boat off the beach and dipped our paddles into the water. We disembarked at Olin Park and hiked through the cool woods, then canoed back, and I still had the energy to go for a jog through our neighborhood afterwards. Weeks ago, this kind of sustained exertion had been unfathomable. This was the real me, the me that had been absent all spring. The SCD had given me my life back.

I was not yet in remission, it should be noted. While the pain and fatigue were largely gone, I still had around two BMs a day, always urgent, always explosive, often with blood. This signaled that my colon was still at least somewhat inflamed. Troublingly, over the past two weeks my improvement seemed to have plateaued–I had the same symptoms now that I’d had two weeks ago. When I first noticed this, I wondered if I’d progressed in the diet too fast. You’re supposed to add a new food every few days, but I had added one every day. Had I added spinach and squash too quickly? I backpedaled, taking them out again, but my symptoms remained the same. That was the only troubling part, though. Overall, this diet had been a wonderful success, improving things at least as much as had any medication.

So it might surprise you to hear that I had begun researching other diets, and that I had decided to try prednisone.

Let me explain.

For all my improvement, the plateau worried me. It was familiar and frustrating–things were livable, but I was not in remission. I was still a little bit inflamed. I seemed to have hit the same wall I’d hit with my previous med regimes, and I couldn’t be sure, but it felt like things might be as good as they’d ever get, for me, on the SCD. I sensed I had reached some inner limit on the diet’s effectiveness.

I’d been thinking a lot about two recent conversations with friends. While throwing the Frisbee, Josh had asked me why I didn’t just try prednisone. I had argued that if I zapped my disease with meds, I wouldn’t understand what caused it. I wouldn’t know what I needed to change, in my diet or my lifestyle, to keep the disease from flaring up in the future.

But his question had begun to haunt me. With every week that passed, I grew more anxious about pregnancy. According to Breaking the Vicious Cycle, the Specific Carbohydrate Diet takes up to two years to fully work for colitis. Perhaps I should stick with it and give it more time, but in two years, if the diet did work, then I’d be almost thirty-eight. I never thought I’d still be trying to have a baby at thirty-eight. With all due respect to the older mothers out there, thirty-eight was older than I wanted to be.

As the weeks ticked by, my resolve began to waver. Yes, I wanted to master my own health. But what if the prednisone worked for me, as it did for Josh? What if, as if by magic, my symptoms just disappeared, the med tricking my body into some new alignment? The allure of this vision began drawing me in. The fantasy of popping a pill and making all my problems disappear. No more isolating diets. No more blood and despair. Surrendering to the mystery of not knowing what caused it all, and just trusting my Western doctors to know what was best. Getting my life back, my health back–sort of–enough to gain weight and be stable and get pregnant sooner.

What would be worse for a baby: being a little inflamed, or being a few years older? This was the kind of choice my disease was now forcing me to make.

I emailed my doctor and requested the drug. I explained about my plateau, and my new plan: I’d stay on the diet for now, while adding prednisone. (Ever the scientist, I would stay on the diet to avoid changing multiple things at once.)

I would take prednisone for just a couple weeks. There couldn’t be much harm in that. I’d met lots of people who’d been on it for two weeks, and a few, like Josh, had no side effects at all. Many others had terrible symptoms, like weight gain, “moon face” (puffy cheeks), depression, mania, and insomnia. But maybe I’d be lucky, and if I hated it, I could just go off it again. Right?

I wanted to be healthy and have a baby. If doing something toxic for two weeks might help me be healthy and have a baby sooner, I supposed it was worth it.

And I’d also been thinking of my meeting with Alison. Her words had also given me pause. She’d articulated what I already sensed about the SCD: that while this diet seemed to be helping my gut, it might not be good for the rest of me. Meat is inflammatory and is associated with disease, particularly cancer. My dad had died of stomach cancer. I was eating over a pound of meat a day. For all my improvement, I still often felt the weird, unsettling sensations that seemed to come with this meat-rich, carb-poor diet. There were sudden energy crashes where I went from strong and vigorous to shaky and weak. There was sudden, ravenous hunger, as if my body had no reserves at all and when hunger hit, it hit with dangerous urgency. There was the unnerving metallic taste in my mouth. Meanwhile, Alison was on a healthier, plant-based diet that worked well for her own proctitis. I wanted that–a diet that helped my gut, and wouldn’t freak me out if I needed to stay on it for years.

I had made some progress in my research on plant-based diets, and was formulating a post-prednisone plan for my big switch. But for now, I’d stay on the SCD for the weeks I was on the drug. I crossed my fingers that the dreaded prednisone would work for me.

Pregnancy and Inflammation

On Friday night I went to a barbecue, one of the only social functions I had attended in several weeks. I was excited to have enough energy to accompany Ron. I ate at home, went to the park and hung around watching everyone else eat, then threw a Frisbee back and forth with my good friend Josh.

Back in my Frisbee days…

I wanted to keep throwing the Frisbee forever. The air was cool and light, and here was something I could participate in, something physical and social where I wasn’t an outsider. I had quit playing the team sport, ultimate Frisbee, a couple years ago: my knees had developed chronic, inexplicable pain that became severe and slowed me down. But years later I still had my throws, my trick catches and flashy forehand, and I loved the familiar snap of my wrist and the soft whipping of my fingers as I caught the disc.

Josh was one of the only other people I knew with colitis. I’d been excited to talk to him when I was first diagnosed a couple months earlier, but I quickly discovered that his experience had been the opposite of mine. He’d had the disease since he was five years old. His mom had it too. Since he grew up with it, he never questioned it, especially since it seemed obviously genetic. He never wondered what caused it. He just took the prescribed medicine–immunosuppressants–almost every day. Whenever he ran out or stopped taking it, his colitis flared up, but then he just zapped it with a couple weeks of prednisone and it went away again. He never thought about it.

Josh had also never changed his diet. He ate Wisconsin’s deep-fried cheese curds and grilled brats with gusto, drank beer, and cooked himself vats of chili with delicious corn bread. Once, at a gas station, he and I had gotten excited to split a package of Hostess cupcakes. Josh lived a completely normal, carefree lifestyle, except for his meds.

As we threw, he said Ron had been keeping him up to date on my illness. “Yeah,” I laughed, snapping the Frisbee back to him. “Ron said you were like, ‘Dude, why doesn’t she just take the prednisone?'”

Josh laughed. He is a self-deprecating, earnest guy. “Well, sort of. Honestly, okay, yeah. Why don’t you?” He threw the disc back.

I had trouble explaining at first. I fumbled for the right words: Well, I just learned I had this disease. It might be normal to you, but it’s a shock to me. I want to figure it out, because I’ve been healthy my whole life until now. And mine’s not genetic–no one in my family has inflammatory bowel disease. Something gave me this, probably something I was doing or something I came into contact with. I want to know what that something is, so I can stop the colitis from flaring up in the future.

But it’s your last summer in Madison, Josh said. You’re missing out on so much!

I know, I answered. I’m so tired, and I feel so lonely with my diet sometimes. But… I paused, holding the Frisbee and thinking. “For me, I guess it all boils down to wanting to get pregnant.”

He raised his eyebrows, giving a slow nod of understanding. “I forgot about that.”

“I just want to get pregnant as soon as possible. I don’t feel like I have years to wait, to figure this disease out. Because I want to know how I can stay in remission, and prevent a flare-up, during pregnancy.”

I told him how at first, doctors said I could get pregnant with colitis. When I’d emailed my first doctor asking about this from Spain, he wrote back that there should not be any thing [sic] to worry about as far as becoming pregnant is concerned. This illness doesn’t adversely affect pregnancy or health of the child. So, have a great trip and let us know how things go.

Since I was so uncomfortable on our trip, I decided to wait anyway. When I got back I asked Carrie, my second doctor, the same question, and she said the same thing. “It should be fine to get pregnant, and the meds you’re on should be totally safe for a pregnancy. They’ve been tested and have a good rating for safety.”

I was reassured, until a few days later when I received my first colitis books from the library. They said that pregnancy during a flare-up increases risks of low birth rate, miscarriage, and anemia on the part of the mother. They also said if you get pregnant during a flare-up, you are 80% likely to remain in that flare-up for the duration of the pregnancy, while if you get pregnant during remission, you are 80% likely to remain in remission.

It was another instance that made me stop trusting my doctors. They had neglected to advise me on this crucial order of priorities: remission first, if possible, then pregnancy.

(They did agree with me, though, about my weight. A year and a half ago, when I’d spoken with a nurse about getting pregnant, she’d recommended I gain weight first. I had succeeded in gaining almost 10 lbs, but since diagnosis my weight had been slipping away again. Now I weighed even less than at that appointment. Because I’m skinny, I needed to gain weight for a healthy pregnancy. And because I now had colitis, in my case, gaining weight meant that I basically did need to achieve remission. Here’s the math: Colitis + pregnancy = generally okay, BUT colitis + incredibly skinny + pregnancy = much riskier.)

A few weeks after my conversation with Carrie, I read a passage in Moises Velasquez-Manoff’s An Epidemic of Absence that sent my heart plummeting. According to a Johns Hopkins survey of families with autistic children:

The more autoimmune disorders present in a family, the greater the chances that someone would also have autism. If one family member had an autoimmune disorder, the chances [of autism in the family] were nearly double. …Mom’s autoimmune disease mattered most. If a mother had an autoimmune disorder, the chances of her child having autism increased nearly ninefold.

…The most authoritative study to date comes from Denmark. Scientists there parsed the records of all children born between 1993 and 2004–689,000 births in total. Doctors diagnosed more than 3,300 with autism spectrum disorder. Mothers of autistic children, the scientists found, tended to have more rheumatoid arthritis and celiac disease than controls. The former increased the odds of autism by over two-thirds; the latter tripled it.

Was I now as much as nine times more likely to have an autistic child because I had an autoimmune disease? That felt like hyperbole somehow. Velasquez-Manoff’s book covers such new science, at such a breathtaking pace, that I had to take what I read with a generous dash of skepticism.

Still, it seemed that the safest pregnancy would be one where my body was not inflamed. My own inflammation could trigger inflammation in my unborn child. If I could get myself into remission, then theoretically there wouldn’t be much inflammation in my body.

The importance of remission during pregnancy didn’t fully answer Josh’s question about prednisone. If remission was so urgent, why not just take it, in case it would help? Then I could get pregnant sooner. I supposed the truest answer was my first one. I wanted to know why I had flare-ups, for my long term health and for a healthy pregnancy. I wanted to understand my disease, and I could only do that by experimenting with diet and lifestyle and seeing how my body responded. I wanted to be, as much as possible, the master of my own health. That, to me, was worth a season of discomfort. Even now, even if it meant missing out on our precious last few months with our friends. It was heart-wrenching, but it felt necessary.

First Workout in a Month!

Back in my yoga days…

It was Day 18 of the diet. Today, for the first time in over a month, I had the energy not only for a walk but for a real workout. I did yoga in the sunroom for twenty minutes, reveling in the ability to stand stretching my arms and feeling the weight of my body sink into my legs, breathing deeply in and out. My body felt strong, but my arms–what I could see of them–looked thin and gray. When I capped it all off with some push-ups and sit-ups, I could do far fewer than in my previous life.

I imagined my bone cells awaking now, busying themselves, getting excited to patch things up and strengthen. I pictured tiny holes in my withered bones filling in, gray material turning to a solid, gleaming white.

My last day of fatigue and “weirdness” had been four days ago. For the first two weeks of the diet I could characterize most of my days that way, but in this third week, most of the time I’d had steady energy. I’d had no muscle aches or abdominal cramps for a couple days now, either. Something must have adjusted within me. Maybe my body was now expecting meat and yogurt; maybe I’d crossed over into some Mongolian or Maasai way of being, with lots of animal products, little fiber, and few plants.

I still doubted this meaty diet was good for me in the long run. But at least today, pain-free as I was, I had some hope that it was healing my colon.

Today was Sunday. I spent the day preparing for Monday, for a writing workshop that would last all week. I was nervous about it. For the last two months, as I’d coped with my illness, I’d had little pressing to do besides rest and heal. It was a miracle, this timing–that the worst of the disease happened to hit right as I was wrapping up one job and beginning to look for another, preparing for the move to Portland. This timing had given me the space to breathe.

But for a week, starting tomorrow, I’d be in class all day. I’d leave the security of home, with its well-stocked fridge and its private toilet and comfy couch. I was packing a bag full of my special food: almond butter, hardboiled eggs, honey-mustard salmon, grape jello, probiotic cheesecake, ultra-ripe banana. I wouldn’t be able to eat any of the “goodies” or the lunch I saw listed on the writing workshop’s program. I supposed I would just have to sit at the formally laid table, fending off well-meaning servers, explaining myself over and over to the other writers as I ate my almond butter directly out of the jar with a spoon, then cracked my hardboiled egg open on my bare white plate.

I prayed that I would ferret out a secret bathroom in the building that no one else knew about. Or that I’d be able to go at times when the bathroom was empty, so that no one would hear the mortifying, explosive noises my body made. Especially no one who knew me, or who I’d explained my disease to. Oh, she’s the gal with the colitis, was what I didn’t want them to be thinking. Poor thing.

Conference events were scheduled for five to six hours each day. The first morning, to my relief I did find an out-of-the-way bathroom, and quickly learned when I was most likely to be alone there. As the day wore on, my body seemed to cooperate: I was going for longer periods without a bathroom, and my stomach granted me more time between the bouts of sudden ravenousness that often overcame me on this diet. I suspected adrenaline was a factor–the excitement of being social, and of learning.

At lunch I sat with a newfound friend from my main class, a “master’s” class for people who had finished a book draft. I briefly explained to my new friend that I had “a GI issue” that I was “trying to self-cure” through diet. She made a frowny face in sympathy, then shrugged, and didn’t even glance at my Pyrex containers as I spooned my Jello and cheesecake into my mouth. No one else at the table seemed to notice my strange food, either. While it was always painfully obvious to me that I was the odd one out, my oddity seemed almost invisible to others who ate normally, and today I was grateful for that. What a relief! I could pass for a normal member of society, at least for short periods.

As the week passed, more and more I felt relaxed, calm, and in synch. For the first time in several months, nearly all was right in the world. I was becoming a writer, one of my life dreams. I was getting good feedback from my teacher and fellow students. I was the author of a memoir that others found powerful. I was a supportive, helpful presence in class. I was a young person with happy energy. I was not the girl with colitis.

The boathouse after the storm.

Midway through the week, a storm shook Madison the likes of which I’d never seen. It tore the roof off the boathouse next door, flung that roof up, and slammed it into the base of the window just below my writing desk. Ron and I were in bed at the time and awoke to hurricane-force winds and an explosion of bricks and shattered glass. But no one was hurt, and in class the next morning I had a great story to tell, and I wrote about it all on my writing blog. The storm felt symbolic to me. It was time to leave Madison. Time to wrap up this writing project, this phase of things, and move ahead with our lives.

At the end of the week I bade my classmates farewell, glowing with happiness, satisfied. The week’s focus on writing, the positive feedback, and my increased energy all served to restore a sense of rightness to my world. I’d been knocked down, but I was picking myself back up again.

The Autoimmune Epidemic

It’s time to tell you what first prompted me to create this blog.

In June 2014, I already had a blog, katiesonger.com. I wrote there about my writing–my book about my Dad, lessons learned as a new writer. But I didn’t feel comfortable writing there about my illness. It was too much of a tangent from the blog’s topic, and besides, it was embarrassing. It also felt professionally vulnerable. Ron and I were moving to Portland this year, and I didn’t have a job there yet. What if potential employers Googled me and discovered my disease?

At the same time, I had the growing urge to somehow write about colitis. I’m a memoirist–when I go through an ordeal, my impulse is to write about it, to process the experience through writing. Colitis was virtually all I could focus on right now. So I’d started toying with the idea of a secret, anonymous blog, where I could pour out my thoughts and yet no one I knew would read them.

Then I picked up my latest colitis-related book, Donna Jackson Nakazawa’s The Autoimmune Epidemic. This book was my catalyst. I read thirty pages, put the book down, scrambled to the computer, created this blog, and wrote most of the previous posts in the following week-and-a-half. I kept the blog anonymous for now, not posting it on Facebook and only advertising it to my closest family members, but still, it was a relief to write. Only after catching readers up on my story did I finally pick The Autoimmune Epidemic back up and keep reading.

I want to share the passages that propelled me to the computer. (In all of the following passages, the bold was added by me.)

From the book’s forward, by Douglas Kerr, MD, PhD:

The numbers are staggering: one in twelve Americans–and one in nine women–will develop an autoimmune disorder. …The American Heart Association estimates that by comparison, only one in twenty Americans will have coronary heart disease. Similarly, according to the National Center for Health Statistics, one in fourteen American adults will have cancer at some time in their life. This means that an American is more likely to get an autoimmune disease than either cancer or heart disease. Yet we hear much more in the press about heart disease and cancer than we do about autoimmunity. And this silence is mirrored in relative fundraising by the National Institutes of Health, the major funding agency for biomedical research in the United States. …The NIH budget for cancer is over 5 billion dollars, ten times that of autoimmune diseases. The NIH budget for cardiovascular disease is over 2 billion dollars, four times that of autoimmune diseases. We have not yet recognized the urgency of the autoimmune epidemic.

Autoimmune disease is far more prevalent than most Americans realize. According to a 2005 National Institutes of Health report, at least 23.5 million Americans have autoimmune diseases (compared to 9 million Americans with cancer). Some estimates place the number at 50 million autoimmune disease sufferers!

Autoimmune diseases are not only widespread, but are often debilitating, and in many cases are life-shortening. Nakazawa writes:

Most of us, at some juncture in our lives, have played out in our minds how devastating it would be to have our doctor hand down a cancer diagnosis or to warn us that we are at risk for a heart attack or stroke. Magazine articles, television dramas, and news headlines all bring such images home. But consider an equally devastating health crisis scenario, one that you rarely hear spoken about openly, one that receives almost no media attention. Imagine the slow, creeping escalation of seemingly amorphous symptoms: a tingling in the arms and fingers, the sudden appearance of a speckled rash across the face, the strange muscle weakness in the legs when climbing stairs, the fiery joints that emerge out of nowhere–any and all of which can signal the onset of a wide range of life-altering and often debilitating autoimmune diseases.

Imagine, if you can: the tingling foot and ankle that turns out to be the beginning of the slow paralysis of multiple sclerosis. Four hundred thousand patients. Excruciating joint pain and inflammation, skin rashes, and never-ending flu-like symptoms that lead to the diagnosis of lupus. One and a half million more. Relentless bouts of vertigo–the hallmark of Meniere’s. Seven out of every one thousand Americans. Severe abdominal pain, bleeding rectal fissures, uncontrollable diarrhea, and chronic intestinal inflammation that define Crohn’s disease and inflammatory bowel disease. More than 1 million Americans. The incapacitating weakness and burning pain that accompany the inflammation of the joints and other organs and lead to the crippling effects of rheumatoid arthritis. More than 2 million patients… And, with almost every autoimmune disease, intolerable, life-altering bouts of exhaustion…

Each of these nearly one hundred autoimmune diseases derails lives. Taken collectively, these diseases, which also include type 1 diabetes, Graves’ disease, vasculitis, myasthenia gravis, connective tissue diseases, autoimmune Addison’s disease, vitiligo, rheumatoid arthritis, hemolytic anemia, celiac disease, and scleroderma…are now the number-two cause of chronic illness in America and the third leading cause of Social Security disability behind heart disease and cancer…Autoimmune diseases are the eighth leading cause of death among women, shortening the average person’s lifespan by fifteen years. Not surprisingly, the economic burden is staggering: autoimmune diseases represent a yearly health-care burden of more than $120 billion, compared to the yearly health-care burden of $70 billion for direct medical costs for cancer.

…[W]hile one in sixty-nine women below the age of fifty will be diagnosed with breast cancer…as many as one in nine women of childbearing age will be diagnosed with an autoimmune illness, which strike three times as many women as men–and most often strike patients in their prime.

Reading that last passage left me wide-eyed. I had inflammatory bowel disease. I was in my prime. In just a few months with the disease, I’d experienced all the symptoms Nakazawa describes, including the “life-altering bouts of exhaustion.” And yet, like most people, before diagnosis I had never really feared getting an autoimmune disease. My fear had always been cancer.

So there is a general lack of awareness about autoimmune diseases–what they are, how they relate to each other, and their commonness. This lack of awareness extends even to doctors:

The average patient with autoimmune disease sees six doctors before attaining a correct diagnosis. Recent surveys conducted by the American Autoimmune Related Diseases Association reveal that 45 percent of patients with autoimmune diseases have been labeled hypochondriacs in the earliest stages of their illness. Some of this, no doubt, has to do with the fact that 75 percent to 80 percent of autoimmune disease sufferers are women, who are more easily dismissed by the medical establishment when hard-to-diagnose symptoms arise. In half of all cases, women with autoimmune disease are told there is nothing wrong with them for an average of five years before receiving diagnosis and treatment. Patients–most especially women–are often left feeling both confused and marginalized.

I thought of all the other patients out there. My uncle and my friend with multiple sclerosis. My several friends with celiac disease. The many others with lupus, Crohn’s, and all these other illnesses. All of these people, isolated like me in their homes, quietly suffering.

Autoimmune disease is often invisible. Those with it are too tired to go out when they’re sick, and at least in the case of inflammatory bowel disease, the symptoms are so embarrassing that we’re loathe to reveal them to others. We hide them away; we hide ourselves away.

“People don’t see what lies behind the scenes in most autoimmune diseases,” [a patient] says. “Because we go through ups and downs, you might see us on a good day, between severe flares, when we seem to be perfectly fine. You don’t know that we’ve just spent six weeks in hell…By the time you run into me at the grocery store at two o’clock in the afternoon and say hello to me, I’m ready to nod and say, ‘Oh, I’m fine, how are you?'”

I was nodding vigorously. Already, this had happened to me countless times–only when I was well enough would I venture out to join Ron at social events or to walk down the block, where I often bumped into friends. To people who saw me, I must seem healthy and happy. Only Ron saw the many hours I spent lying forlornly on the couch, or clutching my stomach in pain, or rushing in nauseating discomfort to the bathroom.

So reading this got me all fired up. There needs to be more advocacy! Cancer awareness went through a revolution a generation ago–fundraisers, the War on Cancer–and people began talking about it more openly. People with disparate forms of cancer undergo different types of treatment and have different forms of disease, but at least they all know that they fall under the umbrella of cancer. We need that for autoimmune disease. An umbrella to fall under, a public awareness movement, more unity. Together we will be more empowered, more comforted, with better care and attention and research.

I Googled the American Autoimmune Related Disease Association (mentioned by Nakazawa), which does exactly the advocacy work that is needed. They hold fundraisers for autoimmune research. They organize campaigns. They create teaching curricula to boost awareness. I joined immediately.

And I created this blog, to do my own little part. To tell my story, one of millions, in hopes of fostering community and raising awareness. It would be anonymous, for now, but at least it was something.

Mine was a mild form of autoimmune disease, I believed. Statistics say proctitis does not shorten life, and I was told that once it was under control I’d be able to resume most things I wanted to do with my time. I should be able to have kids, doctors said, and to travel.

But I knew the “mildness” of my disease pointed to the seriousness of the autoimmune epidemic. Even this “mild” illness had, by June 2014, turned my life upside down. I wanted to join forces with the many other suffers out there, use my feeble remaining energy to advocate for others who were even worse off. Perhaps I could be a bridge between the healthy and the sick. My own suffering gave me knowledge of this new world of disease, but I was still blessed with a certain amount of health and energy, not to mention education and mental health and support. I could begin translating my experience for the rest of the world–the healthy group to which I had so recently belonged.

But at What Cost?

After a few months with colitis, I discovered a new skill. Not only was I learning to adjust my routines, diet, and social life, but I could often tell when others were doing the same. I was acquiring disease radar. Disease-dar?

I bumped into Alison, a woman who, years ago, had taught me the Arabic alphabet. I love languages and international travel, and Arabic is fascinating and important. During class I had reveled in the challenge of practicing the beautiful, sinuous letters, and the delightful shift of right-to-left writing and reading. The class had been held right in Alison’s apartment, with just a handful of us nerdy, earnest students gathered around her dining table.

I was excited to see her again now. As we chatted, I decided not to mention my disease. This was always a question: whether to bring it up and be honest, or withhold it and spare the other person the trouble of pitying me. This time I chose the latter.

There was plenty else to catch up on. I told her how I’d started working at home in order to write more, and about the book I was writing. For the past year I’d been working on a memoir about my father, who died of stomach cancer in 2012. Recently I had finished the first draft. Alison was enthralled: She, too, had thought about writing a memoir. She urged me to email her.

Later, as I composed my email, a memory winked into my awareness. Alison had had a restricted diet! Whenever an Arabic student brought food to share, she had politely declined, saying vaguely that she was “dealing with some health issues.”

It was the kind of thing I now said all the time.

I wrote most of the email about Dad, and my book. Dad was a complicated man, I explained. Brilliant, talented, sensitive and sweet, but also depressed and alcoholic.

My mom divorced him when I was seven and he never really recovered. My sister and I parented him a lot, trying to uplift him from his depressions and sometimes “rescuing” him by taking him to rehab or hospital psychiatric wards. I felt close to him and simultaneously felt the need to free myself of him. Both adored and abandoned.

I told her how, as Dad was dying, I felt closer to him. Watching him suffer, caring for him and spending time together, dealing with his dying process–all of this helped me to forgive him. I loved him fiercely and was heartbroken about his death and his life. The book was about that, too, and the healing that took place between us as he died.

I took a chance and included a small mention of my colitis. And Alison wrote back within an hour: She had the exact same diagnosis. Not only that, but her dad was also complicated and there were many other parallels in our lives. We had to talk!

At the end of her email, she wrote, Hope they haven’t got you on the dreaded Prednisone! You don’t need it. We must talk about this.

I was more than eager. I still had major misgivings about the Specific Carbohydrate Diet. Maybe she was on it, too–maybe she’d convince me to stick with it. I needed some convincing.

My gut symptoms were still much improved, though not normal. But what worried me was the rest of my body. A few days before my scheduled tea with Alison, I had a decidedly bad day. In the early morning I awoke with a gasp–my right calf had cramped when I’d curled my toes in my sleep. I had never gotten charley horses; now I had an inkling of how painful they could be. My eyes wild in the dark, I clutched at my foot and fought to keep from shouting. Luckily for Ron, asleep beside me, I managed to silently grab my toes and unclench the muscle.

My stomach (well, my colon) behaved itself all day. But from late morning on, I struggled with fatigue, gnawing hunger, and the creeping, “weird” feelings that often came over me lately. I still hadn’t figured out how to describe them. Sometimes I could feel my teeth. They tasted almost metallic. Metallic taste is a common symptom of ketosis, the state the body enters when it switches to ketone (fat and protein) energy rather than glucose (carb) energy. But this wasn’t just a metallic taste–it was also the vivid, unsettling feeling that my teeth were rattling around in my gums. They felt brittle, dislodged, as though they might fall out at any moment.

The aches continued all day. I felt twangs of pain in strange places–my forearms, my ribcage. Pain in your left arm, in particular, is not something you want to experience when you’re messing with your body. Was there something wrong with my heart??

By late afternoon I gave up on the walk I’d been looking forward to. It was to be my first walk in a week. I’d been too optimistic after a pleasant day the day before–I supposed that, with colitis, getting your hopes up was dangerous business. Fuzzy-headed, I called Ron and asked thickly if he could swing by the co-op for the groceries I’d planned to get. I suspected I needed more fat. Online forums said this could happen, this fatigue and achiness, and the solution is to eat lots of fat to compensate. I hoped some pork chops and almond butter–my new food for the day–would do the trick.

All of this made me question the Specific Carbohydrate Diet. What was it doing to my body? I suspected my body, except my intestines, would have preferred to just stick with the carbs.

I thought of Dad. With his stomach cancer, he’d struggled with the same paradox that I now faced, the terrible paradox of digestive diseases. When you have a digestive disease, you have trouble keeping weight on. Your body needs calories and nutrients to fight the disease, but the disease itself prevents the absorption of calories and nutrients.

Due to this paradox, Dad languished for months in the hospital. He knew he had cancer and he desperately tried to gain weight so he could start either chemo or surgery. He couldn’t hold food down, so he endured intravenous feeding, nasal-gastric tubes down his throat, and even tubes stuck into his abdomen to help feed and drain him. He worked and worked to gain weight, but he would ultimately never do chemo or surgery. His cancer just held him trapped in this horrific, terrifying limbo, slowly sapping his strength, until there was no hope.

I am skinny by nature, with a high metabolism like Dad’s. I stand 5’9” and, before diagnosis, weighed 124 lbs. I could not afford to lose much weight, but people often lost weight on the Specific Carbohydrate Diet. At my most recent doctor’s appointment I had weighed 116 lbs. I suspected that now I weighed even less. My jeans fit easier than usual. My arms looked thinner.

Was I putting myself into danger?

They say that with low-carb diets, if you don’t get enough fat, your body starts metabolizing its own fat. I didn’t want to lose any more of mine.

I had recently described the diet to my friend Lia. The amount of meat I ate on the SCD was ridiculous, I said with a grin. I ate meat at almost every meal. It was the antithesis of how I’d been eating for years, how I’d been told to eat by Andrew Weil, Michael Pollan, and countless other integrative health, diet, and ecology experts. You’re supposed to “Eat food. Not too much. Mostly plants,” as Michael Pollan says.

Lia looked taken aback. “That is so much meat!”

I laughed, nodded. “I know. But I think of it like: I have an injury. If I had a broken leg, I’d put my leg in a cast, right? A cast isn’t ideal–legs need to exercise or they atrophy. But to heal the bone, you temporarily need the cast. Maybe that’s how it is with my gut right now.”

This was what I told myself, and it helped and made sense. I was temporarily sacrificing my general health while I nursed an injury. Hopefully when my gut healed–maybe in a year or two–I could tone down the meat again and rebalance my diet.

Sometimes, though, when I had a bad ache or the feeling that my teeth would fall out, I thought of Dad. All his life, he disdained fruits and vegetables, despite their healthy, anti-inflammatory, anti-cancer properties. Balance Your Hormones, Balance Your Life says that increasing fruits and veggies “Exerts an antibiotic activity against Helicobacter pylori (H. pylori), a bacteria that…has been linked to peptic ulcers and stomach cancer.” My heart yearned to go back in time and somehow make him eat healthier. Now I was eating more like him. It made me shudder.


Alison and I had our tea on her balcony, overlooking the courtyard of her fancy apartment building. The warm summer air wafted in across the shady spot where we sat.

I told her about my diagnosis, my symptoms, and my special diet, and she shook her head. “I worry about that diet, Katie.” Alison was in her sixties, tall and beautiful, with thick, shoulder-length black hair, pale skin, and red lipstick. “All that meat is, well, so inflammatory.”

I winced. “I know. I haven’t figured out what to do about that.” I didn’t know what made a food inflammatory, but I knew that inflammation is unhealthy and that meat is inflammatory.

She explained her own history and diet. She’d been diagnosed thirteen years ago with proctitis–“That’s what I have!” I squealed–and worked, like me, to find healing strategies apart from medicine. Like me, she wanted to get to the bottom of why she was sick, and to use her body’s natural healing systems, not just zap the disease with medicine and hope it went away.

But she had landed on a different diet. She talked about a slew of doctors that advocate plant-based diets. Joel Fuhrman, John McDougall, Michael Klaper.

She was also into fasting. She periodically traveled to a spa-like facility in Santa Rosa, California to undergo a supervised water fast, meaning that for days on end she took in nothing but water. Supervision was necessary because water fasting can be dangerous. “But these people are very good,” she assured me. “They’ve seen something like eight or ten thousand people through this process, and they’ve never had a fatality.” That wasn’t entirely reassuring.

She went on: Fasting is used to cure countless conditions, digestive and systemic. “You’d be amazed, the things that respond to fasting.” Diabetes, multiple sclerosis. You arrive at the program, get evaluated thoroughly by their health professionals, and are prescribed a number of days for a fast. If your condition is serious but you seem healthy enough to withstand a long fast, more days are prescribed. “I met a woman who was there for a forty day fast. Forty days! But it’s amazing–people really can go incredibly long without food.”

I knew that was true. Dad’s body had rejected even liquid nutrition weeks before he died. I had assumed no one could live more than a couple weeks without food or, especially, water intake, but he had lived for three. The only thing he took in, in those three weeks, was an occasional sponge swab of cool water to wet his lips.

Alison frowned at me, looking me up and down from across the table. “I would worry about you, though. You’re already so skinny.”

I nodded. “I’m not sure fasting would be good for me.”

Between fasts, Alison stuck rigorously to a plant-based diet. Not even honey was allowed, because it’s processed by animals. No other processed sugar was allowed either.

Through these methods, Alison had held her proctitis at bay for the last thirteen years. She hadn’t cured it, though–she still had some diarrhea and blood, which had become normal for her. (Early in the conversation, we decided to share details like this, a newfound intimacy that comes quickly with digestive diseases. “Let’s be frank, shall we?” she said. “If we’re talking about this, we’re going to get graphic.”)

Aside from her minor symptoms, Alison felt otherwise healthy. She needed no medicine at all. Recently, she had become more aggressive with her efforts–more fasting, and eliminating a few more things from her diet–in an effort to eliminate her proctitis completely. Her doctors at the fasting program were optimistic. Even her conventional doctor here in Madison had become impressed with her progress without medicine.

Before I left her apartment, Alison piled my arms with DVDs, information sheets, and brochures about her diet. “I admit there’s something cultish about this,” she said, smiling. “But I do feel really strongly about it.”

I went home, not a convert, but very interested. I hadn’t known much about other diets that might combat colitis. It was exciting to think others might work, without the risks of what I was eating now.

I made a decision: I would ride out the SCD for the rest of the month, finishing my experiment and keeping an open mind. But I would also research these other diets, in hopes of finding something that could work and be good for me.

Lessons from Being Left Out

One night, our friends Jeremy and Allie invited Ron and me over for a movie. It was a Friday and we all ate dinner separately, then Ron and I walked to their place, right down the block. Ron brought a jar of popcorn kernels, which we kept on hand to make our favorite homemade popcorn. You pop the kernels, then add olive oil, salt, garlic powder, a smidge of cayenne, and a generous helping of nutritional yeast. It is the best movie snack I’ve ever eaten.

Ron made an especially good batch that night. In the middle of the movie, at a pause, Jeremy and Allie and Ron were all licking the salt and spices from their fingers. “Ron, that is the best popcorn I’ve ever had!” someone said.

They offered me some, but as usual I declined. No corn of any kind is allowed on the Specific Carbohydrate Diet–as a grain, it’s verboten. Luckily I was still full from dinner, so my cravings weren’t as strong as they might have been. I contented myself with remembering exactly what the popcorn tasted like.

The only trouble was, everyone kept talking about it. “Seriously, Ron. I mean, it’s the best popcorn I’ve ever eaten.” Crunch, crunch, crunch. I could smell the oil, corn, and salt in the air. The more they talked about it, the more my spirits began to fall.

When Jeremy went to get something from the kitchen, Allie turned to me with a dreamy look in her eye. “You know what I’ve really been craving lately? A real ice cream sundae. I’ve looked everywhere, and you can’t find them in Madison!”

“Really?” I said, surprised. “But there’s so much ice cream here.” Wisconsin isn’t called the Dairy State for nothing.

“No, I mean real ice cream. All the places here sell custard, but it’s not the same.”

“You mean like soft serve?”

“No…”

She described the ice cream she wanted, and the toppings that make a good sundae. I grinned along with her, imagining the taste and the textures, the chocolate sauce dripping over sprinkles, berries, maybe bananas. I’d gotten used to my split mindset these days: one part of me enjoying imagining delicious food, the other part wistfully reminding myself that I may never be able to eat certain things again. Ice cream was one of them.

I allowed that wistful part a single comment now. “Maybe in a few months I’ll be able to at least eat Almond Dream, or Coconut Bliss.” I hoped I sounded brave.

“You can’t eat ice cream?”

I shook my head. “No dairy.”

Allie’s eyes fell. I looked away, still smiling, suddenly uneasy. I sensed her realizing her error.

We changed the subject. Today was a big day in Wisconsin: The state’s gay marriage ban had been overturned. This was, it turned out, even big news for Jeremy and Allie.

“Now we can really get married,” Allie explained. She and Jeremy were getting married in October.

“You guys?” Ron said, confused. He cracked a smile as Jeremy returned to the living room. “Jeremy, is there something you haven’t told me?” We laughed.

They explained that, in solidarity with gay friends who couldn’t be legally married, they had decided to forego legal marriage when they tied the knot. Like a gay couple in Wisconsin, they would hold the ceremony but not sign any legal documents.

Ron and I were floored. “Have you thought about getting married in another state that does allow gay marriage?” I asked. I’d been to the wedding of one straight couple who’d driven to Iowa the day before, getting their license there in protest of Wisconsin’s ban.

“We thought about doing that,” said Jeremy. “But if we were a gay couple, then when we came back to Wisconsin, we still wouldn’t be legally married here. So we decided to just not do it altogether, until the state lets everyone get married.”

I sat back, speechless.

Ron and I had gotten married here almost two years earlier. Our officiant was a Unitarian Universalist minister who happened to be a long-term friend of mine. She and her wife had gotten married in Madison three months before our wedding. Since they couldn’t be legally married under state law, in lieu of a state marriage license they had created their own special certificate to sign. They invited everyone in attendance to sign it too, in witness of their wedding. The certificate was beautiful and colorful, and in certain ways much more meaningful than any official state document. But it would not give them tax breaks. It would not bestow the right to jointly parent a child without thousands of dollars of legal fees, or the right to make life-and-death decisions for each other in the hospital, or countless other rights.

I sign my marriage license.

This officiant friend, who had gone to such trouble to create her own meaningful alternative to the state marriage license, was one of the signees on Ron’s and my state marriage license. Another signee was my sister, my Maid of Honor, who also happens to be gay. My sister lived in Oregon, where same-sex marriage was also banned at the time of our wedding.

So of the five signees on Ron’s and my marriage license in 2012, two had been women who could not legally sign their own marriage licenses under state law. And one of those was a minister.

And yet, despite all that painful and infuriating irony, it had never occurred to Ron and me to do what Jeremy and Allie were doing, foregoing the marriage license in solidarity with these special people in our lives. We had felt deep sympathy and anger on their behalf, certainly. We hoped with all our hearts that the bans would be lifted soon. But we had done nothing tangible to make these beloved women feel included, perhaps by excluding ourselves in protest and thus standing with them.

Collecting my thoughts, I said all this to Jeremy and Allie, telling them how much I admired their stance. They laughed off my praise. They joked that now that the ban was lifted, they might “really” get married this year, assuming the ban didn’t return.

Reaching behind Jeremy’s chair to turn a light on, Allie knelt in front of him on one knee. “Jeremy?”

“Yes, dear?”

“Will you…” (dramatic pause) “…turn that light on for me?”

We all laughed.

On the walk home, Ron and I talked again of our admiration for Jeremy and Allie. Ron paused. “Hey, sorry about the whole popcorn conversation.”

“Thanks,” I said. I confessed that it had bothered me, once again, to hear people talking about delicious food I couldn’t eat. Normal-diet people are often totally oblivious to the isolation of special-diet people. Until recently, I knew I had been one of those oblivious people.

Ron rubbed my shoulders.

Thinking about it all the next day, I was struck by the juxtaposition and the lesson to be learned. For the last two months, I’d been struggling with isolation from fundamental social activities, like eating, that everyone else seemed to take for granted. It had made me think of others with dietary restrictions, such as my several friends with celiac disease. I doubted it had ever occurred to me, till now, to refrain from talking about bread or beer in front of them, let alone from eating and drinking these things when they were around. Now that I felt left out, myself, I’d been ashamed to realize how little attention I had paid to others in similar plights.

Talking to Jeremy and Allie about marriage reminded me that my empathy could and should extend far beyond others with dietary restrictions. Many people are left out of society in various ways–by not being in the majority, or by active bigotry. My struggles were giving me a heightened awareness of privilege in general, of how it feels to be excluded. That awareness was something meaningful to be gleaned from my own pain.

Food, Diet, and Dealing with Isolation

On Day 14 of the Specific Carbohydrate Diet, things were going well. Yesterday, as I’d cooked my squash, I’d felt my best in several weeks. Maybe even the best since being diagnosed with colitis three months ago. All day my energy was steady and good; I’d had no stomach discomfort at all; I felt relaxed and at peace. I had just one BM, and although there was diarrhea as always, there was no blood.

It was impossible not to get my hopes up about this diet.

Today I ate an actual meal for the first time since starting the diet. I’d added a new food every day for a week, so by now I had a bit of variety to choose from. Adding new foods so quickly was technically cheating–I was supposed to be waiting 2-4 days between adding items. But at that rate it would be months before I could eat many things at all, so I was accelerating the diet’s pace. If I noticed any changes for the worse, I could always backpedal.

I could now eat:

  • Broiled ground beef, turkey, fish, lean pork, and chicken soup.
  • Eggs, homemade probiotic yogurt, and dry curd cottage cheese.
  • Peeled, cooked, pureed apples, carrots, and squash.
  • Cooked spinach.

So this morning I sautéed spinach, scrambled an egg, and dolloped applesauce on my plate with a sprinkling of cinnamon. On the side I finished off my latest mason jar of yogurt mixed with honey. It was so beautiful, to see this plate of healthy, colorful food in front of me, a real meal at last. I savored it.

 


Meanwhile, I pondered a recurring issue that had come up again last night. I’d had two friends over for tea, an unusual circumstance these days–fatigue and other symptoms had largely isolated me in the last two months. But I’d been emailing with Jess and Maggie about digestive issues, and Maggie had struggled for years with IBS and gastritis and had tried all sorts of diets, and I felt they would both understand my needs if they came over.

We sat in the living room by the big window, the lake shimmering outside. I watched as they sipped their tea, sticking to my SCD grape juice just to be safe–I didn’t yet trust anything not specified in my diet. Jess listened with interest as Maggie and I described our various woes and remedies, then we talked about what we were doing right now, getting together with friends, and how we had stuck with just tea, and how hard it was to socialize around food.

“I haven’t quite figured it out yet,” I confessed.

“It’s hard,” Maggie agreed. She said even after years, she hadn’t figured it out either.

Looking at my food now, on Day 14, I mused about how triumphant I felt cooking a meal, and yet how foreign and paltry my meal would seem to most of my friends. My standards had completely changed in the past two months, and it was one more thing that now isolated me.

The first time I tried to be social on a special diet had been just after Ron and I returned from Morocco and Spain. I had recently begun to understand how serious my illness was, and to drastically alter my diet for the first time. Suddenly I couldn’t eat high-fiber foods, high-fat and fried foods, legumes, dairy, or wheat. So when friends invited Ron and me to brunch at a restaurant, I was nervous. I didn’t quite know what I’d eat. But I figured I had to learn sometime, and if I went hungry I could just eat afterwards, back at home.

We arrived at La Brioche, one of Madison’s best brunch joints, bustling on that Saturday morning. Cheerful people packed the tables, the air thick with the scent of rich pastries, bacon, sausage, and eggs. The sights and smells of the restaurant made my heart sink. My mind was split in half. One part of me tried to stay present, out with friends on a Saturday morning enjoying a festive atmosphere. That was what I’d normally do here. I’d done this countless times; such meals had always been carefree and relaxing and fun. But the other half of my brain–much more than half, actually–saw everything through new eyes. I couldn’t be as carefree as I’d been in the past. I now had a disease. I had to be careful what I ate, and it was going to be a challenge to find something to eat here.

I bit my lip as I scanned the menu. Around me the seven others at the table, including Ron, murmured enthusiastically about all the different options. The eggs benedict sounded so good to them. (I couldn’t eat it–it was served on a croissant, and the asparagus would have too much fiber for me.) Or, oooh, the vanilla challah French toast! (I couldn’t eat the creme Anglaise, or the caramelized pecans, or the berries.) Or what about the house cured wild-caught salmon omelette? (The cream cheese, chives, and tomato were all out.)

I kept my eyes on my menu and tried not to look distraught. I was determined not to seem like a victim, not to draw too much attention to myself, since I’d already be asking for extra things from the waitress and I didn’t want to seem any more self-absorbed than necessary. I fought to come up with a useful mantra. Health: a lot of those foods weren’t really healthy, anyway, with all their cream and fat. Right? I tried to muster an inner superiority to comfort myself. I worked to conjure images of healthy friends who also might abstain from many of these foods.

But it didn’t work. Mostly I just felt awful. I had not felt this utterly left out since my shy, lonely days in high school.

Perhaps the worst part was knowing that just months ago, I, too, had been able to look at a menu with nothing but happy anticipation. Now I was abruptly cut off. Separate.

The only thing I could find that suited my diet was the spinach and chevre omelette, without the chevre. The menu said “All omelettes served with a spring mix salad and a slice of sourdough baguette,” and I knew that was meant to sound appetizing, but I couldn’t eat either of those things. I asked the waitress if I could have roasted potatoes instead.

Unfortunately, she was standing at the opposite end of the table. I had to almost shout to make the request. Heads turned from me to her and back again as we spoke. She smiled, nodded. “It’s an extra four dollars, but we can make that substitution.”

Four dollars, for a small bowl of potatoes?! I considered asking, “Even if it’s for a medical reason?” but quickly nixed the thought. Trying not to sound bitter, I told the waitress nevermind and turned to Ron quietly. “You can have my sides, then.”

I double-checked with the waitress that the cheese would be omitted from my omelette. She nodded agreeably. She left, and a few eyes slid my way sympathetically–my friends knew about my colitis. I tried valiantly to look cheerful. If I was going to learn to be social with colitis, I was going to have to be cheerful. I suspected people would get tired of feeling sorry for me pretty quickly.

The waitress brought our food. My first bite of omelette was heavenly; it practically melted in my mouth. “How is it?” Ron asked, and I raised my eyebrows and nodded and said honestly that it was really good. I was relieved. Then I realized what I was tasting. I opened the omelette; the inside was packed with creamy cheese. No wonder it had tasted so good.

I stopped eating, watching all the others eat for ten minutes while I waited to flag down the waitress. When I finally got her attention she fell all over herself apologizing: “I swear, I asked the cooks twice if they’d taken the cheese out.” Another five minutes later, when the others had mostly finished their meal, a second omelette was brought for me. The waitress said it would be complimentary and I thanked her sincerely. My friends’ sympathetic looks returned as I began to eat, trying once again not to stand out.

My meal had been reduced to basically eggs and spinach. (How odd, I thought on Day 14: That’s what I ate this morning, and this morning I appreciated it so much…but this morning I ate it alone without anything to compare it to except what I’d eaten recently.) Eating among others whose plates were piled with savory, delicious food that I couldn’t eat, my own meal felt merely nourishing, not appetizing. It was nothing like the meals being eaten by everyone around me.

The whole experience made me feel even worse than I had thought it might.

After that, and a couple more meals like it, I became wary of ever eating with friends. One evening I went to a potluck and ate a bowl of plain squash while everyone around me ate rich homemade tacos piled with fresh vegetables. Another time I ate dinner alone, then joined Ron and friends at a barbecue and watched as plate after plate of brats and roasted veggies was laid out in a feast. At that meal, everyone kept talking about how delicious the food was, and about other delicious meals they’d had recently (which I also couldn’t eat), and alternative ways to prepare this same food, with sour cream, for example, which, you guessed it, I couldn’t eat.

By the barbeque I had perfected the art of looking unperturbed when left out. It was surely the only way people would still enjoy hanging out with me. I buried my frustration, as a matter of social survival.

Reading Andrew Weil’s Eating Well for Optimum Health now, months later, I finally understood why I felt such acute pain from these experiences. His book is not geared towards ill people, but rather towards healthy people who want to stay well. That means that as I read it, I often felt now-familiar pangs of isolation whenever he recommended foods that were off limits to me, such as whole-grain carbs. But he also writes of the social and cultural importance of food:

Coming together to share food is a behavioral pattern we have in common with many other creatures. The word companion derives from the Latin word for bread, panis. Breaking bread together both establishes and symbolizes a fundamental social bond. A Japanese phrase for an intimate companion is “one who eats rice from the same bowl.”

…Consider the communal feasts that punctuate the calendars of the world’s religions. In fact, the words festive, festival, and feast have a common Latin root, suggesting that occasions merry, joyous, and significant are all distinguished by eating in company.

…The social importance of food and eating, like their association with pleasure, must be honored by anyone advocating eating well. Too often people who follow rigid diets in the name of health isolate themselves from the social interaction that is itself an important factor in optimum health.

For me, this passage rang true and triggered a jumble of sad questions. How was I supposed to be healthy, socially, if I was suddenly cut off from eating with friends? Was Dr. Weil chiding me for “isolating myself,” when my own rigid diet was not a choice but a necessity? Was I doomed to miss out on a crucial part of social interaction for the foreseeable future?

I knew Dr. Weil was right, though. I had experienced exactly the isolation he was talking about. I’d thought I might be able to take eating out of the social equation, eat separately from everyone else but still enjoy their companionship. But that was proving much harder than I’d pictured. Without the physical act of eating together, something vital was lost. Maybe my friends couldn’t feel it, but I sure could.

The passage made me determined to find ways to “break bread” with friends in the future. Maybe almond bread, if I stuck with this diet! For now I could bear being isolated, since my diet was so new and I was on a short-term trial. But if I stuck with it, I would have to find ways to adjust, because the current situation was just too depressing. Maybe the solution would be to cook for other people, bringing them into my home for food I knew I could eat. I knew many friends would also be up for the challenge of cooking SCD-friendly dishes, at least occasionally, if I requested it. And I could befriend others on similar diets.

Whatever the case, there had to be solutions. I didn’t want to be forever isolated from this important cultural ritual. I needed to find ways to participate.

Colitis and the Sacredness of Food


Judaism considers food a visible manifestation of the covenant between man and God. ~ Rachel Naomi Remen


As soon as I opened Andrew Weil’s Eating Well for Optimum Health, I knew I had a lot to change in my relationship with food.

I thought I’d been cultivating a better relationship with food. In the last two weeks, through my new diet, I was learning to eat new things and wean myself off carbs. That much was true…but I hadn’t yet paid attention to how I ate.

I’d been utilitarian with my meals. Still in Phase I of the diet, I added foods one at a time and watched how my gut reacted. By now I could eat the following: broiled beef or fish, jello, peeled and cooked and pureed carrots, eggs, ripe bananas, applesauce, dry curd cottage cheese, homemade (probiotic) yogurt, and cooked spinach, my latest addition. I hadn’t yet bothered to make any actual meals out of these ingredients. Fatigue was ever-present. Most often, I simply filled a bowl with one item, zapped it in the microwave, ate the item, then return to the microwave for the next item. I got up and down six or seven times per meal. I usually ate alone, while Ron was at work, and often in front of the computer.

Dr. Weil writes, “How we eat reflects and defines our personal and cultural identity.” Reading this sentence made me cringe. These days I ate like a depressed, cultureless, workaholic robot!

And that wasn’t just because of my diet, or my illness. For a year and a half, since beginning to work at home, I’d gotten lazy with my meals. I was a writer and a stream ecologist, and at lunch time I would drift reluctantly from the computer to the kitchen, whip up a quick meal–boxed mac n’ cheese with tofu and salad was a favorite–then hurry back to my desk and gobble my food while continuing to work.

Compare my eating habits to Weil’s description of food as an ancient ritual:

Ritual meals featuring special foods help renew bonds between friends, family members, and communities on both sacred and secular feast days. Consider the Jewish Passover seder, where those in attendance ask and answer questions about the special items on the menu. “Why on this night do we eat only unleavened bread [matzoh], when on all other nights we eat either leavened or unleavened bread?” The answer reminds the diners of their distant ancestors who labored as slaves in Egypt and had to flee so quickly that they could not allow the dough for their bread to rise. A delicious spread, charoset, made of finely chopped walnuts and apples, moistened with sweet wine, and often flavored with cinnamon, appears only at the seder. It symbolizes the mortar used by the enslaved Israelites to construct the Pharaoh’s buildings. Participants eat some of it spread on matzoh with a topping of pungent horseradish–sometimes so pungent that it brings tears to the eyes. This combination, said to be the invention of Rabbi Hillel, a great Jewish sage who lived around the time of Jesus, is supposed to remind those who eat it of the inseparability of sweetness and bitterness, of joy and sorrow, in human life. Passover and Easter both evolved from older pagan festivals celebrating the return of light and life at the spring equinox. Hard-boiled eggs appear on tables at both holidays because eggs are symbols of fertility and renewal, as do spring greens as symbols of new growth.

I felt such peace when I read this passage. And how much was lacking, still, in my own habits! I often ate hardboiled eggs, but never with any intentionality, usually stuffing them down my throat to assuage my ravenous hunger. When I wasn’t at the computer, I ate hunched over a magazine or a book, or sat back watching TV with my bowl on my lap, always ignoring the food I ate.

Truth be told, I had been this way for years. And even now, when my life suddenly revolved around food, my food was still invisible to me.

I could forgive myself. In the last couple weeks, especially, I’d been exhausted and somewhat out of my mind, fuzzy-headed. But I loved this book for reminding me of a lesson I still wanted to learn. It was another way that colitis, I hoped, would become my teacher.

It doesn’t take a holiday to have a sacred, grateful relationship with your food. Some of my friends blessed their daily food as one might at a sacred festival. They expressed gratitude to the farmers who harvested the grain, or processed the veggies, or raised the beef. Some friends knew farmers personally; a few had been farmers themselves.

So on Day 13, as I added squash to my diet, I tried to be more present with my food.

I’d be trying butternut squash, since we had one in the kitchen already. An SCD recipe said to strip the squash of peel and seeds, bake it with butter for 30-40 minutes, then sautée it with olive oil, butter, garlic and mustard and mash it all up together. It would be my latest pulpy, mushy concoction, like the puréed carrots and homemade applesauce and yogurt I’d already been eating.

This morning I felt energetic, not stretched-thin and woozy like I often felt lately. That helped. I picked up the squash and tried to appreciate its beauty, the artful smoothness of its uncut skin. As I sliced it open my eyes drank in the orange-yellow center, not just for the color but for the nutrients I knew it contained–my body longed for more color in my food, more varied vitamins and minerals. I’d been excited yesterday to add spinach, the first green thing I’d eaten in twelve days. I felt similar about the squash.

Opening the garlic powder and the mustard, I inhaled their scents with true satisfaction. I’d been so careful, these last couple weeks, to strictly follow my diet that I hadn’t allowed myself any spices except salt and cinnamon. Adding not only squash, but also garlic and mustard, was utter luxury. The cooking scents filled the kitchen–oil, garlic, mustard, squash–and enveloped me in comfort.

As I mashed up the baked mixture, I mused about the wonderful intentionality of adding new foods one at a time like this. I truly appreciated each one to the fullest. We live in an era of such abundance, when people in many modern cities can get almost any ingredient they might want, and can readily sample cuisine from across the globe. But lately I’d been a little island of sparsity. It brought me back to the Peace Corps, when in my small Tanzanian village I could only get salt, tomatoes, onions, and (if I was lucky) garlic to season my food. Many people in the world don’t even have those. Billions of people eat virtually the same things every day, for lack of money or other ingredients.

I ate my delicious squash and tried to savor each bite. Once again I appreciated how this illness, and especially this new diet, forced me to pause and reflect on each new thing I ate. I hoped that, when I worked my way up to abundance again, I would carry this appreciation with me.

Reflections on Day 12

Today was Day 12 of the Specific Carbohydrate Diet, and the jury was still out. My symptoms had plateaued. This had happened before, and it was maddening, to get better but not all the way better, over and over. It had happened with a few med regime changes by now.

I was down to two or three BMs a day, no blood in my stools for several days, and only rare pain or discomfort. All these changes were, of course, very welcome. But I still consistently had diarrhea. And I still hadn’t shaken my fatigue.

Proponents of the SCD would say it was too soon to make a judgment, that the diet needed a full month trial. The fatigue might be par for the course: When switching to low-carb diets, a “low-carb flu” is common in the first few weeks, as your body adjusts to getting energy from protein and fat instead of carbs. Fatigue is one of the main symptoms.

Still, after the roller coaster of the last couple months, I wasn’t yet convinced that this diet was fully working.

What I was glad about, though, was everything I was learning. As I had written in my journal, I had begun to appreciate colitis as a learning experience, mentally as well as spiritually.

On the mental side: Forcing myself to give up grains and legumes for a month took away most of the easy meals I used to make. I was gaining a new repertoire in the kitchen, another step toward developing a better relationship with food. I had always wanted to want to cook more, which I knew would foster a truly healthy diet. But up to now, I had been lazy. This disease was forcing me to change and to finally learn. Sadly, I could see that if I had never contracted colitis, I may never have made the time.

I was learning about nutrition. At last, details were sticking that I could never get to stick in my head before. Details like:

  • Energy is all about glucose, the simplest sugar.
  • Glucose is found in honey, but the body also breaks down other foods into glucose, too. Noodles are basically glucose waiting to be digested.
  • Protein, too, can be broken down to glucose. It can also be turned into ketones, our alternative source of energy.
  • Along with energy (calories), we need nutrients–vitamins and other molecules that our bodies need to function.

I had heard the term “empty calories” before, but never really understood what it meant. Now I did. Whenever I had eaten a plate of noodles and cheese, a common snack before my colitis began, I had gotten calories and energy but not the other piece, the vital building materials my body needed.

So no matter what happened with this diet, my new knowledge would stick with me. That was something.

And on the spiritual side: I was beginning to see that I’d been looking at my colitis the wrong way. Often, for the last few months, I had felt as though life was on hold, especially motherhood. It is possible to have a healthy pregnancy when you’re not in remission, but my weight and energy were so low that pregnancy didn’t seem safe in my case. My doctors and I agreed on that. I found it ironic and heartbreaking that I had hemmed and hawed for years about being ready for a baby, but now that I couldn’t have a baby (yet), I suddenly wanted one so badly. Each time another friend posted a baby picture or pregnancy announcement on Facebook, I felt stronger pangs of sadness and frustration and worry.

But while my baby plans were on hold, maybe my life didn’t need to be. Life might have veered off the course I’d set for it, but there was much to learn on this new course.

A friend had once asked me why I might want a baby. After listing off the usual reasons–I’ve always wanted kids, I’d love to see Ron as a dad, I want a family to fill out our home, it would be fulfilling–I paused and added one more. “I think one of the main reasons I want kids is to learn from them. Watching a baby be born and grow into a child and become an adult… I would learn so much from that. About humanity. About where I came from and how I developed, about the world. Seeing the world through a child’s eyes–that would be so amazing. And having kids would teach me to be better, more magnanimous and patient, less selfish. I want to learn all those things. I want my kids to teach me.”

I still wanted all that. But in the meantime I could learn a lot, this year, from my colitis. It was like I did have a baby, just a baby of an unexpected kind, this year. Something fussy and needy and challenging to manage. Something all-consuming, that had turned my whole life upside down, but that was forcing me to be better in some ways. I could learn many valuable life lessons, right now, right here. I was having to move slower, slow down, appreciate little things. I was focusing largely on my own health, something I’d neglected before. I was learning to reach out for support from Ron and family and friends. All these things, and the many other lessons, would probably make me a better person. And they would make me a better mother someday.

Again and again, I had read that patience is needed with colitis. I was trying to be patient. This was going to take some faith.

Unexpected Gifts


Now that I view the scene in retrospect I see it as a very gentle and firm deportation, taking me from the country of the well across the stark frontier that marks off the land of malady. ~ Christopher Hitchens, on his first experiences with cancer

People who have sought healing everywhere else are often afraid to look within, afraid to find, at depth, someone insignificant or even unworthy. Yet this is rarely the case. The soul is our birthright. At depth, everyone is beautiful. Often it is the discovery of the “spot of grace” that heralds the beginning of our deepest healing. ~ Rachel Naomi Remen


I’ve written a great deal about the physical changes that came with ulcerative colitis. The new medications, the indignity of my symptoms, the many changes to my diet. My pain and fatigue. But I haven’t written as much about the emotional side of things. Perhaps that’s because, in the first few months with my illness, I was not attending to that side of things myself.

True to form as a doer and a fixer, so far I had been working frantically, trying to learn and do and fix my way back to normalcy and health. But one day, in a moment as ordinary as any other, I had a thought that shifted how I saw my illness and my life. It happened just a few days after starting the Specific Carbohydrate diet, before my symptoms greatly improved, during one of the worst periods of pain and discomfort I had ever experienced.

I wrote about it in my journal.

It’s about three months since my colitis diagnosis, and almost exactly two months since that life-changing appointment. Has it only been two months? Spain and Morocco seem ages ago.

Tonight, reading next to Ron on the couch, it occurred to me that despite all my efforts there’s something huge missing as I wrestle with colitis. I’ve still, even now, sick, been too much inside my own head. Our apartment is strewn with books, a dozen of them, from the library: about autoimmune disease, diets, digestion. (I already returned the four books I read right off the bat about colitis specifically.) I’m being a scientist.

But I’m missing an important, vital opportunity: the spiritual side. The chance to really grow…not just learn a new body of knowledge. To exist, as Pema Chodron says, in the places that scare me. To train and hone my thoughts, my feelings–towards gratitude, appreciation, loving-kindness in the face of adversity.

moonI am in a place that scares me. I’m especially scared because it’s a new place. I’ve been to see Death before, and love, and broken, twisted-heartedness. But never physical vulnerability–never for more than a few days or weeks. This is chronic pain I’m dealing with. The kind that, when it hits, takes a lot of the meaning out of everything. Like the moon tonight, so pure and shining white in the blackening sky as Ron and I walked, fatigued, back home from the park–Yahara Park is the farthest I have energy to go, if at all, most days. I looked up and registered that the moon was beautiful and tried to appreciate it, but what I mostly noticed was the absence of emotion because a thick filter of stomach pain–which comes and goes, the last couple days–was drawn across my eyes. I didn’t care about the moon. Or the trees, or Ron, or anything else. Just about making the pain go away.

Is that what it’s like when you’re dying? Tedious and veiled, something you just want over and done with? So far, unaccustomed to pain as I am, when I’m in pain the only thing I really care about is making the pain end.

I go into these fear spirals, filled with grief (for things I’m not even sure I’ve lost in the long run) and isolation. What if I can’t have a baby? What if it’s never again practical to go to Africa? Or even Andalucia? Claustrophobia sets in and I struggle to breathe. My whole identity is changing, and I desperately don’t want it to.

These are the things I should be–want to be–learning about, too. These are the ways colitis could be a great gift to me, forcing me to finally have to work to be happy in life. I’ve had it so easy so much of the time.

I want to fight, to be a fighter, to scrabble back up and come out swinging. But it feels good to have this yin, too, not just the yang. To breathe into it. To work on acceptance, malleability, letting go.

Colitis was helping me understand chronic pain and chronic illness. It was making me a better citizen of the world in that way. It would make me more compassionate, more alive. For the first time, tonight I felt grateful for all these lessons. I supposed they were the kind of lessons that mostly only come when you don’t want them at first.

This Thing Might Actually Work!

In the days before I switched to the Specific Carbohydrate Diet, my health was rapidly spiraling out of control. Each day I had more, and nastier, bowel movements, culminating in twelve on Day 1 of the diet. I felt terrible–constantly tired, my stomach bloated and painful–and I was scared. Each time I scrambled to the bathroom, I fought feelings of fear and hopelessness.

But within a few days of starting the diet, a miracle began to occur. My symptoms were gradually improving. Hope, tentative at first, began to blossom within me. I had fewer and fewer BMs, tapering off at two or three per day. The blood in my stool decreased. My pain and discomfort decreased, too–within a week, my stomach (really my colon) seemed to have settled down. One morning, for the first time in weeks, I awoke pain free.

I couldn’t believe it. This diet might actually be working!

The diet was by far the most rigorous I’d ever been on. Its title is misleading. “Specific Carbohydrate Diet” sounds like eating a lot of carbs, when really you’re eating a lot of meat, at least at first. The diet is followed in phases, beginning with the easiest-to-digest foods and building to more difficult ones as your intestines heal–so the first phase is the most limited of all.

Here are the things you can eat in the introductory phase:

  • chicken-soupEggs
  • Apple cider (diluted with water)
  • Grape juice (diluted with water)
  • Grape jello
  • Chicken soup (ingredients: chicken, broth, and cooked, pureed carrots)
  • Beef patty (broiled)
  • Fish (broiled)

That’s it. Literally. You can add no other ingredients other than the ones I just mentioned.

It took several days to prepare for this change. Once again, I had to establish new routines in the kitchen. I commenced the diet, and each day began eating a pound–a pound–of plain, broiled beef patties, plus two bowls of chicken soup.

The fatigue was still intense in those first few days. Upon starting the diet I spent a whole weekend lying on the couch, watching shows on Hulu. I’d been experiencing fatigue like this since starting the Canasa suppositories, which I was still using in case they were doing something. (I liked to be scientific and only change one thing at a time, so I was changing my diet without changing my meds.) My doctor said fatigue wasn’t one of Canasa’s symptoms, but Ron pointed out that it was probably from the illness itself. The Canasa wasn’t working, and ongoing diarrhea and blood were wiping me out. So I figured part of this fatigue was probably just a carryover, not the new diet. I’d been especially sick for weeks, and it would take time to regain strength.

But there was a new element that I was sure was the diet. I was experiencing sensations I could only describe as…weird. I couldn’t pinpoint exactly what was wrong, but it just felt like something was missing from my body, some crucial element. I felt generally toxic, tired, fuzzy-headed. I noted the change.

On Day 6, I awoke feeling energetic for the first time in weeks. I wrote “Energized!” that day in my food log, where I recorded my symptoms and diet in detail. But the next day my fatigue returned. It hit like a wave, relegating me again to the couch. Very luckily, I worked at home and could rest as needed, although by now I had fallen far behind on my projects.

I was doing my cooking in big batches. Every four or five days I settled into the kitchen for several hours, filling up all our Pyrex storage containers with my plain chicken soup, plain ground beef patties, pureed carrots, and grape jello, which I subsisted on for the next several days. At each meal, I ate out of a single bowl that I rotated several times through the microwave, filling it with first one item, then the next, then the next. This big-batch cooking method saved me the trouble, and energy, it would take to cook every day.

Aside from the fatigue and “weirdness,” things were going well enough that I could begin adding new foods. I did this carefully, one at a time, in the order prescribed by the diet.

The first addition was cheese. I couldn’t wait to taste it–cheese is perhaps my favorite food, and I’d been off dairy for several weeks. This diet allowed dry curd cottage cheese at first, and I spooned it carefully out of its package, white as snow, moist as damp earth. I brought the spoon to my mouth and sampled it, savoring it like a kiss. It was as wonderful and refreshing as spring rain.

The next day I ate the usual for lunch. First my two plain broiled burgers, microwaved, eaten with a fork. Next, the last of my peeled-cooked-pureed carrots (I would make some more tomorrow). Some grape jello to top it off, but in between, one more bite of the new, heavenly cheese, its luster faded slightly now that I was used to it. Then I added applesauce, today’s new food. As with the cheese the day before, its flavor exploded through my mouth. It tasted like sunrise. Like walking barefoot through an orchard. Never before had I appreciated the incredible flavor of apples so much as I did today!

The following day, it was time to add the SCD’s special homemade yogurt. Elaine Gottschall, the diet’s main proponent, explains that homemade yogurt has far more good bacteria than storebought yogurt, because at home you can ferment your yogurt for longer, perhaps 24 hours. I had dutifully bought a yogurt maker and yogurt starter. Making yogurt was as easy as Gottschall had described, and it was satisfying to open the yogurt maker and find a big batch of plain, white homemade yogurt warming on the counter.

On Day 11, for the first time since diagnosis, I awoke looking forward to time in the kitchen. I had never really enjoyed cooking, although I wanted to. I wanted to want to cook. But today, I did want to cook. Possibly because today’s new item was cheesecake.

Cheesecake! It was to be crustless, made with homemade yogurt as well as the dry curd cottage cheese, honey–another new ingredient–and eggs. I couldn’t wait.

I spent four hours in the kitchen. Making the cheesecake, plus all my other food for the next several days, was daunting and tiring but also satisfying. It felt good to have a rhythm, and to feel less pain, to finally be on a path that actually might lead where I wanted to go.

And the cheesecake tasted as heavenly as any I’d ever eaten.

“Want a bite?” I asked Ron.

He closed his eyes as the yellowy substance melted in his mouth. “Mmmm.”

I grinned, practically wagging my tail. “Are you jealous?”

“Yes.”

“Good.”

For once, Ron was jealous of my food.

Why I Chose the Specific Carbohydrate Diet


As a physician, I was trained to deal with uncertainty as aggressively as I dealt with disease itself… “I don’t know” had long been a statement of shame… In all of my training I do not recall hearing it said aloud even once. But as I listened to more and more people with life-threatening illness tell their stories, not knowing simply became a matter of integrity. – Rachel Naomi Remen


When I asked my doctor for time to try the Specific Carbohydrate Diet, I did so with eyes wide open.

I’d been reading about colitis, autoimmunity, and digestion for almost two months by now. I was on something like my seventh book. I’d encountered several diets for ulcerative colitis, but I was already skeptical–after over a month, my current diet wasn’t working. There was a dizzying array of other options, but I wasn’t convinced any of them would work, either.

Some other diets were meaty and paleo-esque; others were vegan; and yet each diet’s proponents seemed to claim that their diet, alone, could help me. I wondered: If these diets were so miraculous, then why hadn’t medicine embraced them? The proponents had ready answers, often dismissing doctors as closed-minded, or claiming Big Pharma had no incentive to study diet…but I had found a few studies of diet. And medicine had embraced dietary changes with celiac disease and diabetes. I mistrusted the adamant cultishness of some of the colitis diets’ advocates.

That was one reason the Specific Carbohydrate Diet stood out to me. Not only had it been around for something like a hundred years, but its main proponent openly stated that it did not work for everyone. As with my new doctor’s willingness to say “I don’t know,” that honesty greatly boosted this diet’s credibility.

The Specific Carbohydrate Diet has some reasonable logic behind it. The premise: An injured intestine cannot digest complex carbohydrates. Most digestion takes place in the small intestine, where enzymes break down foods and help absorb them. Here’s a diagram, in case you can’t picture the small intestine:

villi-attribution-unknown

Digestive enzymes need healthy villi, or intestinal cells, to function properly, but if those cells are damaged then the enzymes don’t work. The complex carbs–the most complex foods we eat–remain undigested and provide a feast for “bad” bacteria. These bacteria proliferate and produce toxins, further damaging the intestinal lining in a vicious cycle.

To break this cycle, the SCD eliminates all complex carbs. No grains at all: no wheat, rice, oats, barley, corn… Few or no legumes, including soy. Instead you eat lean meat, eggs, and fish for protein; and lots of veggies, except potatoes, which are too complex. Sugars and carbs come in the simpler forms provided by the fruits and veggies. Honey, another simple sugar, is allowed as well. All of these foods’ chemical structures are easier to digest for an injured intestine.

Without carbs, the “bad” bacteria get gradually starved out. You replace them with good bacteria found in homemade probiotic yogurt, a trademark of this diet. If the diet works for you, it takes perhaps one to two years to cure you of symptoms. Afterwards, you can attempt to begin eating normally again, monitoring your symptoms in case of a flare.

I didn’t understand all the science behind the diet. Proponents describe the damage as being in the small intestine, but I knew that my colitis was in the colon–as far as I knew, my small intestine was functioning perfectly. Also, most gut bacteria reside in the colon. How would “bad” colon bacteria make their way up into the small intestine and further damage the cells there? The bacteria would have to move against the flow of traffic, and get past the one-way valve separating the two spaces.

Nevertheless, this diet was the most tried and true of all I’d encountered. Its earliest form was created by American Drs. Sidney V. and Merrill P. Hass in the early 1900s for treatment of celiac disease. After decades using the diet with their patients, the Drs. Haas published a book about it in the 1950s. Eventually, a desperate mother named Elaine Gottschall found her way to them. Her young daughter’s ulcerative colitis was not responding to conventional medical treatment and, as Gottschall would later write, “surgery seemed imminent.” Gottschall’s daughter was placed on this diet, “and within two years she was free of symptoms.” Gottschall went on to study digestion and nutrition, and to write Breaking the Vicious Cycle: Intestinal Health Through Diet. The book, first published in 1994, popularized the SCD.

As of May 2014, Breaking the Vicious Cycle had 4.5 out of 5 stars on Amazon.com from 567 customer reviews. Here were the titles of the first several reviews, all with 5 stars:

  • nothing short of a miracle
  • Proof positive – the SCD works!
  • I am slowly getting my life back.
  • Tough at first, but it will cure you.

By comparison, Dr. Dahlman’s book about the diet I’d been following was at 4 stars from 30 customer reviews. It seemed much less tried-and-true than Gottschall’s diet…and Gottschall, unlike Dahlman, was not selling thousands of dollars worth of supplements.

The SCD sounded, in many ways, even harder than the diet I was already on. I could add some dairy back in, but no rice? No corn? It was a little hard to picture.

I wanted to give it a month, which is Gottschall’s advice:

Many people have approached the dietary program by planning to give it a one month trial. If followed carefully for only one month, there should be changes for the better. These improvements provide the encouragement and support needed to commit oneself for the necessary longer period… If you see no improvement after a one month trial, the diet will probably not work for you. It is your decision at this point to return to your old pattern of eating or to continue eating according to the outlined diet. Your decision, of course, will depend upon your overall state of well being.

I could do this. One month wasn’t so bad, not after what I was already going through. By now I was used to eating separately from my friends, and spending more time in the kitchen. If after a month this new diet didn’t help me, then, perhaps, I would try the dreaded Prednisone.

Taking Matters Into My Own Hands

It was mid-May of 2014, and I had a choice to make.

Two-and-a-half months after diagnosis, I was no closer to getting my colitis under control. I had switched meds for the third time two weeks ago, but the new meds weren’t working. My condition was even worsening.

I wrote to my new doctor:

Within a day or two of the medication change I began experiencing 2-3 bms per day, more urgency, diarrhea, and occasional tenesmus. In the last few days my symptoms have worsened: 3-4 bms/day, a great deal of urgency, stomach cramping, diarrhea, and occasional blood. I‘ve also been fatigued for the last 2 weeks since starting the Canasa. I’m too tired to exercise except the occasional walk, and my work is suffering too.

Something was still wrong…and it was getting worse.

It all gave me this feeling of groundlessness. And panic. Despite all my research, there were still gaping holes in my knowledge. What had caused my disease? Was I still doing whatever had caused it; was I repeatedly triggering an inflammatory response? And why wasn’t my body responding to meds?

I knew it was common for people with colitis to struggle like this, often for years. I had hoped perhaps I would be different–I was slender and athletic and young–but now I couldn’t stop myself from compulsively calculating what this pattern could mean for my life. Months and months of missed work and lost wages. Years of discomfort and pain and fatigue. Years of missing social engagements, missing out on the travel I loved so much. Years stolen from my late thirties, and with those years, possibly the last chance to have a baby and become a mother and get to watch Ron become a father.

It was hard to keep these thoughts from spiraling out of control.

The doctor asked if I wanted to try Prednisone. As I read his words, through my anxiety I felt a gut-level resistance. No, I did not want to try Prednisone.

There were several reasons. First, I had been warned against this medicine again and again. Prednisone is a steroid and I knew many people who’d taken short courses of it for various ailments, and they had overwhelmingly urged me to steer clear of it. Have you tried the dreaded prednisone yet? one friend asked over email. Don’t take it, whatever you do. Its side effects include sleeplessness, nervousness, mood swings, and rapid weight gain around the stomach, face, and neck.

It is generally very effective for calming down proctitis, my doctor wrote. We do not use it long term due to its effect on bone, glucose metabolism, among other things, but in the short term is very reasonable.

His words didn’t make Prednisone any more appealing.

Second, I was afraid to take it because I was afraid it wouldn’t work. None of my meds had worked so far. If Prednisone didn’t work, then what would be next? Prednisone would mark a shift into the stronger drugs with more side effects. I had always been leery of medicine, in general, and now I sensed myself on a precipice, slipping into a world I desperately wanted to avoid.

Finally, it seemed ham-fisted to move on to Prednisone when we didn’t even understand the root cause of my illness. What was triggering my inflammation? As long as we didn’t know that, we’d just keep trying different drugs that limit the immune response. But what was my system responding to?

Even if Prednisone did work, remission would likely be for just a few months or a couple years. I’d still be no closer to understanding my disease, or what made it come and go, or how to prevent it from getting worse. I wanted a more real, longer-term solution.

There was another option.

I had a diet I wanted to try. My current diet wasn’t working–obviously–but by now I’d heard about a different, older, more tried-and-true diet for colitis and Crohn’s and related diseases. So I asked my doctor for some time:

I would like to try the Specific Carbohydrate Diet, described on this website: www.breakingtheviciouscycle.info. This is a popular diet for people with IBD and works for many (though not all). It’s used in addition to (not as a substitute for) conventional meds–so I’ll stay on my meds. …I think if it works for me, I’ll probably see positive results within a month or so… Since I’ve now been sick over six months and on largely ineffective meds for three months, this seems worth a try! Let me know if you have any objections.

The doctor’s response was lukewarm. There is no good evidence that dietary changes will reduce the inflammation from your proctitis. With that said, I have no problem with you trying such remedies.

I knew this was the closest any doctor would ever come to a glowing endorsement of what I was about to do.

Colitis and Autoimmune Disease

By mid-May of 2014, I had finished several books on colitis and the digestive system. I was no expert, but I had a good handle on the basics of my disease. I wanted to learn more, though, about autoimmunity.

Ulcerative colitis is an autoimmune disease. In autoimmunity, the body mistakes some piece of itself–in my case, the rectum–for an invader and attacks, causing inflammation. Many autoimmune diseases are inflammatory diseases, mine included. (I’d heard colitis called an “autoimmune/inflammatory” disease, as if the two words were interchangeable.) When the body attacks itself, that attack often includes inflammation.

In my quest for more information about gut bacteria, I stumbled across An Epidemic of Absence: A New Way of Understanding Allergies and Autoimmune Diseases by Moises Velasquez-Manoff. Curious, I checked it out at the library.

From the beginning, I was fascinated. The book’s jacket reads:

Whether it is asthma, food or pollen allergies, type-I diabetes, lupus, multiple sclerosis, or Crohn’s disease, everyone knows someone who suffers from an allergic or autoimmune disorder. And if it appears that the prevalence of these maladies has increased recently, that’s because it has–to levels never before seen in human history. These days no fewer than one in five–and likely more–Americans suffers from one of these ailments. We seem newly, and bafflingly, vulnerable to immune system malfunction. Why?

I hadn’t understood that my disease related to diabetes, lupus, or MS. Reading further, I learned that celiac disease is also an autoimmune disease, as is rheumatoid arthritis and a slew of other ailments. I knew a woman with MS, two young men with Crohn’s, and several people with celiacs. But in all my suffering over the past two months, it hadn’t occurred to me that my ailment had anything to do with theirs. Or that it might be related somehow to Ron’s seasonal allergies.

Reading An Epidemic of Absence was a new angle on my illness. My other books didn’t talk about autoimmunity at all. Some focused on diet, or at least gut flora, as the culprit behind my disease, but what if its cause was something more insidious? Something more systemic, more environmental? This was worth researching.

Delving into Valasquez-Manoff’s book, I quickly realized I needed a primer on the immune system. The book was a bit disorganized–Velasquez-Manoff throws out terms like “T-regulator cell” without really explaining what they mean, or at least not till many pages later.

I had taken some biology in college and still had my trusty book, the industry standard Biology by Neil A. Campbell. Flipping to the section on the immune system, I was amused to find it highlighted throughout–once upon a time I must have known this stuff. Now I spent a couple hours rereading it, scratching my head and trying my best to understand.

My takeaways:

  • The immune system is extremely complicated, with over a dozen different types of cells and many proteins involved.
  • Immune cells, called lymphocytes, are white blood cells and originate in the bone marrow.
  • Immune cells can be separated into two groups, depending on where they mature. B cells remain in the bone marrow and mature there; T cells migrate to a little organ called the thymus and mature there.
  • There are several different types of B cell and T cell. Some attack invaders, some remember the invaders for next time, and some trigger actions in other cells.
  • Invaders are generally called antigens. Some antigens float freely in the bloodstream; others invade healthy cells.
  • T cells, the ones that attack, generally attack the body’s cells that have become invaded. The T cells break the corrupted cells apart, or swallow them, or otherwise destroy them.
  • B cells, the ones that attack, generally attack the antigens that are free-floating in the bloodstream. They produce antibodies that bind to the antigens, destroying them or rendering them ineffective.
  • In the last fifteen years or so, science has become aware of both T-regulator and B-regulator cells. These newly discovered immune cells “turn off” the other T and B cells at the right time–when the invader is under control. That helps prevent the immune system from going on the rampage and potentially harming healthy cells in the body.

I added that last item myself. I took biology in 1997; there’s just a whisper of regulator cells in my old textbook. But according to Velasquez-Manoff, more recent science has confirmed the existence of these cells.

Now that I was thoroughly versed–sort of–on the immune system, I turned back to An Epidemic of Absence. Velasquez-Manoff’s overarching theme is the “hygiene hypothesis,” also called the “old friends hypothesis.” The gist: We have become too clean. We evolved interacting constantly with microbes and parasites, and our immune systems are designed to expect infectious diseases and to fend them off. As modern humans came to understand germ theory and clean up our living environments, we greatly diminished the number of microbes and infectious diseases we encountered. This helped us live longer, but it made our immune systems go haywire. Without contact with many invaders, the immune system is far less “educated,” less good at distinguishing friend from foe. In many cases, it gets confused and turns on the body.

Toward the beginning of the book, Velasquez-Manoff presents two charts from Jean-Francious-Bach’s “seminal paper” in the New England Journal of Medicine. (Take a look at page two of the link.) One chart shows the dramatically decreasing rate of several infectious diseases–tuberculosis, mumps, hepatitis A–in the U.S. and European countries since 1950. The other chart shows the concurrent rise of autoimmune diseases–asthma, MS, Crohn’s, type I diabetes–over the same period.

Velasquez-Manoff says this same pattern is evident throughout the world, from less-modern to more-modern areas. New York City will have more autoimmune disease and less infectious disease than rural New York state, which will have more autoimmune disease and less infectious disease than Nairobi, which will again have more autoimmune disease and less infectious disease than rural Kenya.

According to Velasquez-Manoff (and the many scientific studies he presents), early childhood and even the womb is the most important period to develop a robust immune system. Robust meaning nuanced, educated. Used to encountering many microbes and parasites; used to distinguishing friend from foe; used to calming itself back down after dealing with infection. Mothers who work on farms while pregnant, especially those who spend time with farm animals and their microbes, are less likely to have children who develop autoimmune disease. Children who play with other children–who are born at least second and have an older sibling, or who go to daycare–are exposed to more microbes and parasites and less likely to develop autoimmune disease. After the first few years of life, though, our immune systems become more static and less able to become educated. You can’t teach an old immune system new tricks.

Velasquez-Manoff’s most provocative, intriguing proposition is that parasites can be used to effectively moderate autoimmune disease and allergies. He presents case after case of people contracting hookworms or whipworms, then watching their allergies or their colitis flares disappear. Of course, there are side effects to the worms, too, for some folks worse than for others. Headaches, fatigue, stomach trouble. But for others, the results are so miraculous that they pay thousands of dollars to acquire their own colonies of worms. The thought is that with the worms to contend with, the immune system becomes distracted and stops attacking the body.

By the time I was through with this book, I was 1) annoyed at Velasquez-Manoff for not organizing it better, and 2) inspired by its many anecdotes and its wealth of scientific studies. There are over three hundred references in the back, and most are peer-reviewed scientific studies from the last fifteen years. The book is imperfect–a New York Times review criticizes Velasquez-Manoff’s overexuberance–but I still bought my own copy so I could reread it and take notes in the margins. Hookworm effectiveness aside, the book taught me a lot about autoimmunity.

I now had two possible culprits for my colitis. Either my gut flora was imbalanced, or my immune system was overactive. It seemed likely that both were true. I grew up in a clean, modern environment in a very developed country, in the city, far from any farm animals. I am the oldest of two children. There’s no colitis in my family, but there is autoimmunity–my dad had psoriasis as an adult and my sister had both eczema and allergies as a child. I seemed to have no problems of my own, and even bragged about my powerhouse immune system–at least once, the rest of the family got sick while I stayed well. But now I wondered. Was a powerhouse immune system desirable, in a sterile society? Perhaps when my gut flora somehow became imbalanced, my trigger-happy immune system had pounced on my colon.

Now I just needed to figure out what to do about it.

My Sigmoidoscopy

Since my meds weren’t working, in mid-May my doctors prescribed a sigmoidoscopy to see what was happening inside my colon. The sigmoid colon is the colon’s last segment before the rectum. Unlike a full colonoscopy, which traverses all six-or-so feet of the colon, a sigmoidoscopy just goes up several inches.

You’d be surprised how excited I was to get this procedure. I had just finished Mary Roach’s Gulp: Adventures on the Alimentary Canal. I recommend this hilarious, educational book to everyone, and especially to those with digestive disorders. Roach takes you on a tour of the digestive tract, beginning with the mouth and ending with the anus, and all the weird science along the route. Scientists who study chewing efficiency. Scientists who investigate the chemical makeup of smelly flatulence. While my other books were teaching me about colitis specifically, this one helped me understand how digestion works in general.

Take the rectum, for example–the part of me that was malfunctioning. The rectum, I learned, is a holding tank. When the tank is full, sensors signal the brain that it’s time to evacuate and we head off to the bathroom. Since my rectum was inflamed, I was rushing to the bathroom much more often because the space inside my tank had shrunk. It seemed so obvious after reading the book, but I had never understood it before.

Gulp ends with a colonoscopy, with Roach as the patient. She describes the experience as amazing, even enlightening. She says that while Americans have colonoscopies the way I had had mine–asleep–Europeans often elect to stay awake and watch the screen. That’s how she had her colonoscopy performed; she says it’s not that uncomfortable.

I wasn’t going to be anesthetized for my sigmoidoscopy, either, so I was excited. It would be a taste of what Roach had described. After all my reading about my own colon, I would finally get to look inside it!

I was also relieved, because I worried that my proctitis had spread. I still had the same persistent, mild-but-acute pain in my lower left side, the feeling that someone was constantly poking me with a pencil. I had once asked Carrie the PA about this mysterious pain, but she’d just shrugged. “Often when one area of the colon’s inflamed, other areas will feel pain. It’s known as referred pain.” But I didn’t quite buy that. Why would this one specific, concentrated spot be so aggravated? Could it really be just sympathy pain? It felt like something was happening higher up than the rectum. I wanted to know what.

To prepare for the sigmoidoscopy, I had to do my first enema. I’d heard of them before but didn’t know what they were. I lay on the floor near the toilet, and squirted what felt like cool, thick water up my backside. My daily Proctofoam made me a pro at shooting things up my rear end. This felt like no big deal, and soon I felt the familiar need to rush for the toilet; within minutes I was “clean as a whistle.” After all the pain and discomfort of the last few months, the clean, drained feeling of the enema was actually a relief.

A few hours later I was sitting on the procedure table in my hospital gown. A new doctor walked in, one I hadn’t met before. He was perhaps forty-eight and slightly handsome; he sat near me and spoke in an unhurried tone. “I’ve been reading through your emails since you got diagnosed,” he began, impressing me immediately. “I can see why you might have been frustrated at times.” I half-shrugged and smiled. He was right.

I confessed my worry that my proctitis had spread. When I had emailed my first doctor about this worry, he had dismissed it: I have not seen someone have an extension of the proctitis into left sided colitis. But the new doctor said what I knew to be true, because I’d read it in several places. “In about thirty percent of cases, proctitis can extend to more-extensive colitis.”

With growing hope that this doctor was more attentive and accurate, I mentioned my constant, sharp pain. “If it turns out this is still just proctitis, then what is that from?”

He smiled. “That’s one of those things that, honestly, science just doesn’t know the answer to yet.”

His honesty sealed the deal. I liked this guy. Willingness to say “I don’t know” had become one of my most desirable traits in a doctor.

I lay on the table and he warned me that to see my colon clearly, they would need to blow air into it. “So you’ll probably feel some pressure and discomfort.” I bravely said okay.

A minute later, I was cursing Mary Roach.

They turned on a loud, air-blowing machine next to me, and the pain of the air being forced up through me was intense. The air felt like a physical object inside me. It felt as though the camera itself was already snaking its way up through my colon–I stared wide-eyed at the screen to check, but the camera was not yet on. I clearly felt the air rise, fist-like, up my left side, then a minute later turn a corner and cross my abdomen through my transverse colon. I cried out a couple of times over the white noise of the machine, in a strained voice, trying to somehow sound light-hearted. The doctor and the nurse at his shoulder murmured sympathetically.

Colonoscopies without anesthesia could not possibly be joyous and comfortable. This small procedure was anything but comfortable, and we hadn’t even gotten started yet.

Soon the doctor was moving the camera through me. After the much-larger funnel of air, the camera felt like nothing at all. Now I could see the inside of myself, and I could grudgingly appreciate what Roach had written. It was fascinating.

The doctor pointed out the healthy part of my colon. Colons, I learned, are supposed to be pink and smooth-surfaced, riddled with a river network of hundreds of delicate red blood vessels. “This part looks healthy,” he said, stopping a few inches up. “It looks like the proctitis is still just in the rectum.” Good news. He brought the camera back to the diseased area, and stopped where the disease ended and the healthy colon began. “See the difference? On the left side of the screen, the side higher up in the colon, you can see the blood vessels clearly. On the right side, toward the rectum, see how you don’t see them?”

“Yeah,” I called over the noise of the machine, gritting my teeth against the pain. Where the proctitis was, the colon’s thin red vessels disappeared. The whole surface there looked rash-like: blotchy pink and red and white, without distinct features.

“Colitis always spreads cohesively,” he explained. “You can usually see a clear line like this where it stops. It doesn’t jump over spots of healthy colon. So, since it stops here, I know there isn’t any colitis farther up.”

I nodded, relieved, praying this would be over soon.

It was. The whole procedure was over within five minutes, although I’d be left with bloating and cramps for a few hours afterwards. It was worth it, though, I decided. I still only had proctitis, and I’d gotten a glimpse of my foe. And of what a healthy colon looks like.

The doctor ordered a change in my meds. This would be the third medication regime we had tried, one new regime every month so far. I would no longer take my four big Lialda pills every day.

“Those pills aren’t working,” said the doctor. “You’re still inflamed. I suspect that, even though Lialda targets the lower colon, your proctitis is too far down and the meds are used up by the time the pills reach it. In your case, rectal suppositories make more sense.” I was to discontinue the Proctofoam–no more laying around for thirty-minute intervals–and start a new suppository called Canasa. It was like the ones I had used in Spain and Morocco, but with a different concoction.

By now I had learned not to get my hopes too high over a change in meds. But I still left the appointment feeling agreeable: The new doctor had made me feel listened to. He was transparent, honest about the limits of his own knowledge and of science. He agreed that I was not in remission, that we should keep trying for better results. I liked him.

And I loved the idea of no longer taking my huge pills every day. They made me feel like a sick person every time I swallowed them. Who knew if this change would work, but I agreed to give it a go.

Road Bumps: Doctors Don’t Know Everything

A week or so after starting my new meds, I began to mistrust my doctors.

My symptoms were dramatically improving. Instead of five or more bouts with diarrhea each day, I only had two or three. There was less blood, less pain, less urgency. These meds seemed to actually work!

I was doing everything I could to help things along. Every night, I diligently took my four huge Lialda pills, and I used my trusty Proctofoam three times a day. As I lay on the couch waiting for the foam to infuse my colon, I worked my way through my four colitis books. And I ate only my new diet, avoiding fiber and whole grains and legumes, sticking to meat and refined grains and almond butter and applesauce.

The more I read, the more questions I had. Should I try to get into complete remission before trying for a baby? How risky was a flare during pregnancy? Should I try to gain weight, as a buffer against more diarrhea? I emailed these questions to Carrie, my PA, explaining proudly that I’d been reading up on colitis.

She suggested we meet again, which I thought was a good idea. Then she went on:

While you wait to visit with me, you should go on ccfa.org (Crohn’s and Colitis Foundation of America) ONLY. This is a very patient-friendly website and is so helpful. Please try to stay away from other sites as there is lots of badness out there too. You will drive yourself crazy.

I knew Carrie meant to be protective of me. But I was startled. I had a master’s degree and believed in the power of knowledge. My books and my Googling brought me comfort. How could a doctor try to take this empowerment away from a patient? She might be right about my meds, but she was wrong about this.

She meant well, I assumed. I shrugged off my misgivings and made an appointment.

I brought Ron this time. He didn’t seem to truly get the seriousness of what I was going through. If he did, wouldn’t he be shaky or panicky sometimes, like I was? I wanted Carrie to tell it to him straight, the way she’d said it to me: You have a chronic disease. You will have to take medicine for the rest of your life. The medicine is expensive. This could take years to get under control.

We all sat in Carrie’s little office and I reported on my symptoms. It was too soon to be certain, but these seemed to be the right meds. I felt optimistic.

“With any luck,” Carrie said brightly, “we’ll wean you off meds altogether and you won’t need them except during flare-ups.”

Part of me was relieved, even overjoyed. But a meek little voice in my mind also spoke up. Um, said the voice, apologetically hoisting a tiny red flag. This is the exact opposite of what Carrie said before.

In our first appointment I had asked Carrie, quite clearly, “Will I have to take meds for the rest of my life?” And she had answered, quite clearly and quite somberly, “Yes.”

My trusted doctor was flip-flopping.

Out loud, I breathlessly said, “Oh, wow.” Most of me really was ecstatic. “That’s really different from what you said before!”

Carrie smiled, too. “Well, in our last appointment, I could see that you were in quite a bit of shock. I could tell you weren’t understanding everything I was saying.”

And my same meek, apologetic voice stirred again. Um. Another little flag. She’s blaming her flip-flopping on me.

We came away from the appointment feeling mostly relieved. It wasn’t all gloom and doom. Maybe Ron still didn’t get what I was going through, but then again, maybe colitis wasn’t as bad as it seemed. Maybe I really had been blowing it all out of proportion.

A week passed. I continued my meds and my diet, and sometimes emailed Carrie with questions. She was always prompt, responding within a day, and her answers were thorough. Another week passed. It was now twenty days since I’d started my new regime.

And nothing had changed.

I didn’t have a lot of diarrhea. I didn’t have a lot of pain or blood or urgency. I wasn’t extremely tired. But it was all still there. Just a little. A few bowel movements a day, a little blood, a little pain. I was a little tired. It was all totally livable…but I wasn’t well. Something was still wrong inside me. And I wasn’t well enough to have a baby.

I wrote to Carrie and listed my ongoing symptoms. My condition seems to have plateaued. I’m guessing I’m still at least a little inflamed. What should I do?

Her response was confusing. It was our next series of exchanges that would finally change how I saw Carrie. You can stop the proctofoam and continue the lialda, she wrote. If your [sic] continue with problems or regress, then we might try a short course of prednisone.

It wasn’t that I enjoyed squirting the Proctofoam up my butt three times a day. I was eager to stop it. But I wasn’t yet in remission.

To make sure I understand, I wrote, can you explain the logic behind stopping the Proctofoam? Since I’m not yet in remission, I’m worried about reducing any of my meds–worried that I’ll just return to my previous state.

A day passed, then another day, then a third. Carrie didn’t respond.

I wanted to like Carrie, I really did. I wanted to like at least one of my two doctors, and she was the one who had taken time with me and prescribed me meds that actually worked. But by now my meek little red flags were beginning to add up, and her sudden silence was the biggest one of all. I needed to know whether to discontinue Proctofoam. Where was she?

I tried my other doctor, the one who had prescribed the wrong meds. Again I described my symptoms and asked his opinion. He wrote: You still have limited inflammation in the rectum and I’m not sure why the Proctofoam was discontinued. So, I have reordered it.

There it was again: relief, mixed with confusion. Now my two doctors disagreed.

It was immensely frustrating to rely on these two people who disagreed with each other about whether I should take a drug. It occurred to me that I’d been taking these drugs without understanding them at all, without questioning what they were doing inside my body or why they’d been prescribed. Suddenly that made me uneasy.

Even after asking dozens of questions and reading several books, I was still just barely grasping what was happening inside me. Something mysterious–maybe bad bacteria, maybe something else–was causing my rectum to inflame. Certain foods probably exacerbated my symptoms, so I was avoiding them. And my meds were supposed to be helping…somehow. But how?

I looked up Lialda. Its active ingredient is mesalamine, a corticosteriod. My Googling told me that corticosteriods replace the cortisol that’s normally produced by the body. Cortisol is a stress hormone associated with inflammation, and somehow, replacing the body’s natural cortisol interferes with inflammation. Proctofoam does something similar.

It was all very vague. I emailed both doctors asking for more details on how the meds worked, but neither responded. This was becoming a pattern.

When I picked up my next refill, I told the pharmacist my woes and asked if he knew how the meds worked.

“I don’t know much detail, either,” he admitted. “But it looks like Proctofoam’s more for treating symptoms, whereas Lialda’s been shown to induce remission.”

I nodded, letting out a breath. “That’s already more than I understood before.”

He smiled. “Honestly, even the doctors often don’t know exactly how a lot of medicine works. You’d be surprised–science hasn’t figured out the mechanisms behind everything yet. They just know that in trials, certain meds work better than others, and they know which side effects are likely.”

This helped me. Hearing “I don’t know” was a relief. It was, at last, an answer–albeit incomplete.

I returned to my apartment and my most pressing question. Should I or should I not continue Proctofoam? Why had Carrie wanted to discontinue it–was she worried about side effects if I used it too long? I’d read that some corticosteroids can produce side effects over time. Even rectal foam or suppositories can enter the bloodstream through the delicate lining of the rectum, wreaking havoc on the body. Maybe Carrie was anxious for me to stop Proctofoam, even before remission.

I emailed her twice more, and was met again with utter, stubborn silence.

A conspiracy theory began forming in my mind. What if there was danger in taking Proctofoam too long, and Carrie was worried, but couldn’t tell me because the MD disagreed? He was the doctor who had prescribed the wrong meds, after all. He could be wrong about this, too. When I used Proctofoam lately, I felt a burning sensation. What if the drug was slowly burning a hole in me?!?

I emailed Carrie a third time. No response.

I finally called her and left a message. She called me back the same afternoon, which just fed into my theory. She must be uncomfortable putting things in writing!

But my theory was dashed once we began talking. I repeated the question I’d asked four times via email: Why discontinue the Proctofoam? Why did she and the other doctor disagree?

“Oh, he and I don’t disagree,” she said dismissively. She sounded brusque, and not at all pleased to hear from me. “I just misunderstood your first email. I thought you were saying your symptoms were getting better, so I thought we could start weaning you off the Proctofoam. I didn’t realize you were still having symptoms.”

That did it. I was officially sick of Carrie’s bullshit.

My first email had made it clear that I was not in remission. Even if she had misread that email, she should have just said so. Instead she’d avoided me (and avoided putting her error in writing), and her silence had caused me to worry. And for the second time in a month, she’d contradicted herself but played it off like I had misunderstood.

No, I couldn’t trust her, or the other doctor. I didn’t trust either of my doctors.

My books said I should get a gastroenterologist I trusted, that this was an important step towards managing colitis. But I might have to forego this step. My insurance only covered this one clinic, and I seemed to be running out of doctors.

I had the distinct impression that neither doctor really, truly cared about my wellbeing. They wanted to help me get better, but they didn’t pay attention to how their actions made me feel. They seemed to hope I’d stop asking so many pesky questions, stop trying to really understand my disease, and just fade back into the woodwork. I felt as though my ongoing symptoms–or at least my insistence on discussing them–had become a nuisance.

Who Am I, with Colitis?

In the first weeks after learning of my colitis, I felt the ground shifting underneath me. Well, not just shifting–more like quaking, or disappearing altogether. My whole identity was being called into question.

I had never realized, before, how much of my identity was wrapped up in being a healthy person. Like anyone in a privileged majority, I hadn’t thought about it much. My health was just always there. Only when reminded of our general good fortune, by a bout with the flu or contact with an ill person, do we remember that there are other ways of being, ways that are more difficult than being healthy.

As it sunk in that my illness could drag on, or that it could come back frequently throughout my life, I suddenly saw everything through the filter of colitis. Using the bathroom was no longer the routine act it had always been. Now it was filled with foreboding and hope, not to mention discomfort and pain. Would I never again have a normal bowel movement? Then there were the four huge Lialda pills I took each evening, “my meds,” a disconcerting phrase. I now had meds. It made me feel so much older than ever before. Were thirty-five-year-olds supposed to have meds?

The biggest shift was the way I saw food. As I began my new diet, eliminating dairy, gluten, legumes, and high-fiber foods, the once-simple act of eating became a foreign experience. More foreign than traveling to Spain and Morocco. There, at least I could gobble down most of what was set in front of me. But now, back home with my new diet, each meal was a puzzle to solve, slightly stressful, and a small triumph when complete.

The night I decided to try David Dahlman’s diet, I spent a full three hours making a grocery list and shopping. It was a Sunday. I needed to do the shopping now, since Ron would have the car during the week for teaching, and I worked mostly at home. I was exhausted as I made the list, and worried, but determined.

When I walked into the food coop where we shopped, I saw everything with new eyes. The bread aisle was pointless to even walk down. I passed pitas and bagels and pastries, all forbidden to me. They looked crisp and perfectly oiled; I could almost taste them. The produce section was the same–I scanned it with calculating eyes, noting which foods I couldn’t eat. Berries. The first berries of the spring were just coming in, and normally I’d jump at them, excited to taste my first blueberry, my first strawberry of the year. But berries have tiny seeds that can’t be removed, and seeds have insoluble fiber. I was to eat no berries for the foreseeable future.

One part of my mind was heartbroken as I walked around. But another part was watching with interest. This was some new part of me, still small, just awaking. Looking at all the bread, cheese, and pasta I couldn’t eat, rather than feeling hungry, she thought, “I used to eat that?” I’d been wondering if my old noodles-and-cheese diet had contributed to my illness. If so, then in a way, those foods were almost toxic.

I had friends who avoided carbs, and dairy products, and all sorts of other things they believed were unhealthy. Some of these people were the healthiest people I’d ever known. They exercised like crazy, and they looked years younger than their ages. A thirty-five-year-old looked twenty-five. A fifty-year-old looked thirty-five. Their skin glowed with health, and they seemed happy and upbeat. But I had never wanted to eat like them before. It would be too isolating, and too much trouble. Their whole lives seemed to revolve around food–some of them worked in the health-food industry. At parties, instead of eating what others ate, they only ate the special food they brought.

Was I going to become one of those people?

I hoped not. Because I didn’t want to have to become someone whose life revolved around food. That would mean being someone entirely new, who spent hours and hours in the kitchen instead of doing all the things I wanted to do. This summer I wanted to work on my writing, and practice my Arabic, and apply for jobs in Portland, where Ron and I would be moving in August. Plus, changing how I ate would make me so separate from everyone else.

And I also didn’t want to become someone on the colitis and Crohn’s disease forums, who listed off my litany of medications and surgeries and the number of flares I’d had. Someone ill.

I didn’t want to be any of these people. I wanted to be who I already was. Katie. A healthy, skinny girl who could eat whatever I wanted, who was learning to be a writer, and who was hoping to have a baby. I wanted my normal life back.

As the weeks passed, though, and I continued to eat differently–just in case it might help–and to take my medicine and to experience symptoms, I became more and more resigned to this new shift in my life. It seemed not to matter what or who I wanted to be. Whoever that was, she was going to be someone with colitis, like it or not. It was like being forced to wear an outfit that didn’t fit me, but I was going to have to get comfortable in it. I was going to have to figure out who I was, now, with my disease.

Eating to Soothe Inflammation

The day after my colitis diagnosis, I began to wonder: Should I perhaps start eating differently?

It was a reasonable question. My symptoms were diarrhea, bloody stools, and abdominal pain. Something was obviously wrong in there; the least I could do was not make it any worse.

I’d had my colonoscopy the day before, but afterwards I’d been too drugged to think. Now I did a perfunctory internet search. Perfunctory was all I had time for–we were leaving for Morocco the next day. One website said to cut out fiber during colitis flare-ups; another mentioned caffeine and alcohol.

I emailed my doctor. Should I be avoiding fiber, caffeine, alcohol, or anything else until my symptoms disappear? Are there any particular foods you do recommend?

To my relief, he wrote right back. There isn’t any specific diet recommendations for you, he assured me. Just be sensable.

I wasn’t too worried–yet–that he had misspelled sensible.

Thanks very much, I replied. Nagged by my internet search, I decided to press on. I’m not exactly sure what a ‘sensible’ diet is–should I be avoiding fiber, for example, until my flare-up dies down? At this point, I’m afraid to eat anything at all, because just the little bit of chicken noodle soup I ate yesterday gave me a stomachache all night long!! :)

(I find it amusing, in retrospect, that I typed a smiley face at the end of the email. I was so earnest!)

Again the response was swift and brief, this time from an assistant.

[The doctor] does not have any specific diet to follow. Generally a good idea to avoid high roughage foods (raw fruits/vegetables) during a flare. Also high fat foods tend to cause more stomach upset. The crohns and colitis foundation has some dietary information. http://www.ccfa.org/resources/diet-and-nutrition.html. If you read this info, keep in mind per [the doctor] you have proctitis and not ulcerative colitis or crohns disease. Let us know if you have any other questions.

By now I was feeling a twinge, just a twinge, of unease about my doctor and his office. I generally trusted them still–the colonoscopy had gone smoothly. But what was with the mixed signals? If I hadn’t emailed a second time, would they never have advised me about roughage? What if I hadn’t written at all?

I clicked the link sent by the assistant. The Crohn’s and Colitis Foundation was clear that diet could, indeed, affect my symptoms, although it was cautionary about one-size-fits-all solutions. It said discomfort can be reduced by cutting back on greasy or fatty foods, milk products, and high-fiber foods like nuts and raw vegetables. I appreciated its thorough, nuanced approach, and the assistant’s sending it to me…when I had asked my question for the second time.

I was also relieved, though a bit perplexed, by the assistant’s declaration that I did not actually have ulcerative colitis. It was a comforting thought. Whew. But what did I have, then? Was proctitis just its own little syndrome? And if I didn’t have colitis, why was the assistant sending me to the Crohn’s and Colitis Foundation? Of course, as I would later realize, I do have colitis. Proctitis is a type of colitis. And yet it would be only weeks before I was told, again, by another doctor in the same office, that I did not have colitis, that proctitis was somehow different. I found this bewildering. These doctors were probably trying to comfort me, downplaying the seriousness of what I had. But their statements were inaccurate, and that undermined my trust.

I left for Spain and Morocco under the happy impression that I did not have a disease–just a touch of one–and didn’t really need to change much at all, except probably avoiding raw salad. That I could do.

The food in Morocco was delicious and exotic. Harira soup, lamb, falafel. Some foods were familiar, some unfamiliar. At times we were hungry–it could be hard to find restaurants–and we’d fill up on bread, or hardboiled eggs, or (in Ron’s case) mountains of fresh olives. Northern Morocco surprised us with its lush greenery and its rolling hills of olive orchards. Vineyards could obviously grow here, too, if alcohol wasn’t forbidden.

Working our way up to southern Spain, across the Strait of Gibraltar and into Andalucia, we discovered the joys of tapas. Plate after tiny plate appeared before us in each restaurant, brimming with roasted pork, salted ham, seafood paella.

All the while, my symptoms were getting worse. But mostly I was happy–we could fix this when we got back. It was only when I returned home, and learned with a shock that I have a serious, lifelong disease, that I began to read more than just one website. As I did, I encountered far more advice about diet.

There were books on eating right for inflammatory bowel disease. I bought one: Tracie Dalessandro’s What to Eat with IBD: A Comprehensive Nutrition and Recipe Guide for Crohn’s Disease and Ulcerative Colitis.

I read the introduction within minutes of receiving the book in the mail. At age nineteen, Dalessandro writes, I was diagnosed with ulcerative proctitis, which progressed to ulcerative colitis and finally, at age thirty-one, Crohn’s disease.

I swallowed hard and kept reading.

After doctors prescribed medicationI asked about diet…but all they could tell me was that my diet would be based on trial and error.

Frustrated with this incomplete answer, Dalessandro went on to become a dietitian and nutritionist, specializing in IBD.

Her recipes are designed to soothe the intestines. She says the same thing I had read elsewhere, that diet is individual, but she presents what works for her and for many people. This book was a helpful place to start, more helpful than anything I’d read so far. I could start by trying what someone else had tried. I didn’t have to reinvent the wheel.

Dalessandro’s book contains detailed lists of fruits, veggies, and grains that soothe or hurt the intestines and colon for many people. Among grains, for instance, she says the wholer the grain, the more it will hurt. Whole grains have more insoluble fiber, which goes undigested and “scrapes” the inflamed colon. In other words, all those healthy whole wheat pastas Ron and I bought? Now I had to discard them in favor of all the ones I’d been trying to avoid for years: white bread and refined pasta only. I would now be eating white rice, not brown rice. Instant oatmeal instead of rolled or steel-cut oats.

For protein, it was to be fewer legumes for me, since legumes are hard to digest. No more black bean chili and red lentil soup, like the harira we’d liked so much in Morocco. Instead I was to stick with good, old-fashioned meat. Once again, this was something I’d long avoided, not strictly but in general, due to environmental impact, increased risk of cancer, and expense. I’m an ecologist by training. Many of my friends are vegetarians.

Fruits and veggies should be peeled, because the peels are where the highest fiber is. The peels are also where most nutrients are, but it was no more peels for me for a while. And fruits and veggies needed to be cooked, too, to make them easier to digest. Peeled, cooked carrots. Applesauce from peeled apples.

As heartening as it was to have a starting place, I felt a now-familiar suffocation drape back over me like a thick blanket as I perused Dalessandro’s lists. This was going to completely change the way I ate, at least for the next few weeks. Hopefully only for a few weeks. But by now, I had noticed that online IBD forums were filled with people whose symptoms never fully went away. I sat with Ron on the couch, his arms around me, and read passages to him in a shaky voice.

Then I found a second colitis diet book, David Dahlman’s Why Doesn’t My Doctor Know This? Conquering Irritable Bowel Syndrome, Inflammatory Bowel Disease, Crohn’s Disease and Colitis. Dahlman agrees with much of what Dalessandro says, which was comforting–it lent credibility to both of them. They both say high-fiber foods irritate the already-inflamed gut lining, and that cruciferous vegetables like cabbage, broccoli, and cauliflower can cause gas.

But Dahlman takes the diet thing much further than Dalessandro. He actually asserts that he can cure IBD (and IBS) with diet.

That got my attention.

Dahlman believes that IBS, IBD, and related gut problems are caused by the disruption of our gut microflora. I had heard of these little critters before; in the last five years, they seemed to be all the rage. In articles and on NPR, I kept hearing that there were trillions of bacteria living inside my stomach, over four hundred species of them, and that I actually needed them to digest things properly. Dahlman writes that modern medicines, especially antibiotics, can wipe out our internal ecosystems. Abnormal bacteria, yeast, or parasites can also throw things off. Even diet may play a role in disrupting the normal gut biota. His solutions are to 1) eliminate problematic foods from the diet, so that the gut can heal, and 2) take enzyme supplements, since digestive enzymes are often weakened in people with diseased guts.

I didn’t trust Dahlman completely as I read his book. I sensed something cultish about his writing. He was dismissive of the medical establishment, and his logic sometimes escaped me. If my gut bacteria were the problem, then why would I be missing digestive enzymes? Weren’t those produced–as I was learning from these books–in distant places like the pancreas, and in the small intestine, which in my case was fine? More suspicious, his recommended enzymes were all sold, quite expensively, on his website. Signing up for a free cost estimate, I calculated that his program would cost me $400 a month in enzymes alone.

But I appreciated his explanation of what might have caused my colitis. My doctors would only tell me that no one knew, and not to dwell on it. Dahlman’s possible culprits actually made some sense. Maybe my gut bacteria were out of whack. True, I hadn’t taken antibiotics for years, rarely took any over-the-counter meds, and doubted I’d been exposed to many parasites lately. But maybe I’d done something wrong in my diet, and maybe diet was a key to getting my health back. I was willing to try these new dietary recommendations. Especially if they might cure me.

The main ones were:

  • Avoid fiber.
  • Eliminate dairy.
  • Eliminate gluten.
  • Avoid gas-causing foods.
  • Do not drink liquid during or directly after meals.

As I began making these changes, the new diet forced me to think about food as never before. I had never been a kitchen person–growing up, my mom liked cooking alone, and my whole life I’d been skinny with a high metabolism. I liked the taste of good food and I tried to eat healthy, but I never had to count calories or watch my weight. Often, food was just a vehicle for filling up my ravenous stomach.

But now I couldn’t eat many of my staple foods. No more boxes of Annie’s organic macaroni and cheese. No more quick-cooking red lentils, and no tofu either–tofu’s made from soy, a legume. No peanut butter, since peanuts are a common allergen. And all my fruits and veggies now needed to be peeled and cooked, so I could no longer just grab an apple or make a quick salad. If I wanted greens, I was going to have to cook them.

Despair sometimes threatened. I struggled to find a new routine, seeking out new staple foods. I could eat white rice. I could eat eggs, and meat, for protein. I discovered that spinach sauteed very quickly, and I actually liked cooked spinach better than raw–it took less time and effort to eat. I could eat most smooth nut butters. I bought a jar of almond butter and guarded it jealously from Ron, relegating him to the peanut butter, which was cheaper. I could eat avocados and bananas.

I ate a lot of bananas.

My go-to snack became half an avocado, a banana, and a couple scoops of almond butter. It wasn’t comfort food yet, but it was tasty. And I had to admit it was much healthier than many of the snacks I’d been eating before.

I could see a silver lining in all this. I was having to get creative, to break out of my old habits and actually cook more. I felt isolated, even from Ron, who still existed in the world of People Who Can Eat Whatever The Hell They Want Without Thinking About It. But in the long run, this new, forced diet might actually teach me some useful things.