Remission arrived in the midst of a very busy year. A year, in other words, much like every previous year. As my health began to improve and my energy returned in the spring of 2015, I quickened life’s pace again. I wanted to make up for lost time.
In March of 2015, two months before remission occurred, I organized my to-do list into a mammoth Excel spreadsheet. My colitis symptoms were still there, but my energy was back. By now my list had become cumbersome. Spreadsheets always made me feel better. All the tasks seemed under control if I could just see them in one place.
I called the spreadsheet “Organizer to Stay Sane.” Just as I had done in my job at the DNR, in my wedding planning, and even when organizing Dad’s cancer care, I divvied my tasks into categories and color coded them in the spreadsheet.
- Blue – Helping Mom with her business’ website
- Green – Volunteer work with my local watershed council
- Pink – Helping a church group design their Africa-related logo
- Yellow – Finishing my book about Dad
- Purple – Job applications and networking
- Orange – Repairs and decor for our house
- Peach – Prepping for a summer kitchen remodel
I made the spreadsheet into a schedule, with columns representing the week each task would get done. Looking at the finished product, I felt my internal pressure dissipate. I had been thinking nonstop about all my tasks. When I occasionally stopped working to rest or exercise, I worried that I was falling behind. The spreadsheet enabled me to think only about the tasks for the current week, which alleviated my pressure. Now, if I got my scheduled work done each week, I could rest or exercise without fretting.
The day after I made the spreadsheet was a Saturday. The weekend’s main task was to paint the living room, which was already strewn with drop cloths and paint buckets. The walls were currently sage green with a brick-red-painted fireplace; I wanted bright cream walls and a white fireplace. I spent all day Saturday painting. By the end of the day, the room was done.
This was my only scheduled task for the week. Sunday beckoned, empty and inviting–all day, I could simply rest. I had never simply rested for a whole day in the past few months.
But on my rest day, I awoke brimming with energy. I didn’t feel like resting. I invited Ron to do yard work with me–not work mandated in my spreadsheet, but bonus work that I thought would be fun. He and I spent the morning dismantling the trellis and the giant, sprawling vine in front of the kitchen window–the vine had been blocking all the natural light. Next, we tore down half the eight-foot wooden fence lining one side of the house, which had blocked sunlight from entering the back patio. Finally, we moved our outdoor furniture around and laid heavy tiles across a patch of soil to create a makeshift “front porch.”
This work took all day. It was incredibly satisfying. Our house was suddenly much lighter and more welcoming, and it had been wonderful to work as a team in the warm sun. For much of the day, I hadn’t needed to think hard and had been in a semi-meditative state.
It was like the compromise I had made with my Tuesday/Thursday listening sessions, I decided. I wasn’t pausing to rest and listen to myself, or pausing at all. But I was at least trying to be self aware while I got things done. Wasn’t that enough?
In the following months, my spreadsheet became my guide. I would often check in with it, looking beyond the current week’s tasks, even though the whole point was to alleviate stress by focusing on the short term. I got a thrill at the idea of all the tasks being done. That should happen by the end of the summer, I calculated. By then, Ron and I should both have jobs, my book should be finished, and our house should be beautiful, with a remodeled kitchen. I often fantasized about myself in that future reality. I would be so happy there. I would lounge calmly in my beautiful house. I would cook calmly in my beautiful kitchen. I would be at peace.
Occasionally, as I went about my tasks, I would remember my disease. Pushing my thick glasses up my nose, I would wistfully remember the contact lenses I could never wear again. Or there would be a trace of blood on the toilet paper, or a loose stool, or a pain in my gut. These moments were always sobering.
But if I found myself standing on the precipice of despair, I would remind myself of either or both of my two thoughts: that my suffering had served some purpose in my family, and that sometimes there is no answer to why bad things happen. Comforted by these mantras, I could step away from the precipice and move on with my busy life.
In late April, I weighed myself and discovered that I’d hit 117 lbs. A victory! This was what I had weighed most of my adult life. My food additions must be working.
At the same time, as I expanded my diet to include more meat and variety, my stools seemed to be gradually loosening again. My energy was not waning, but my other, older colitis symptoms were returning: urgency, explosiveness, a touch of pain. In early May, another flare-up hit, my first dramatic flare in six months. Like the one after Thanksgiving, it hit suddenly. Within a few days, I was up to 12-20 BMs a day with accompanying fatigue and pain.
As with the Thanksgiving flare, I didn’t know which food had triggered it–I was now eating a great many things. But my diet had definitely changed in the last few months. It seemed that once again, my body was confirming that diet had a profound impact on my colitis.
I contacted Dr. L for some Proctofoam, my go-to flare-up drug. Proctofoam always worked. But in terms of diet, I was determined to try something different this time. Never again did I want to be shackled to my three-meal-a-day “safety meal” of brown rice, kale, red lentils, and tofu. That diet had helped get my Thanksgiving flare under control, but its cost had been too great in terms of social isolation. So this time, I gritted my teeth and did not change my diet. It wasn’t like I was eating junk food. I still had the most conservative diet of anyone I knew! If Proctofoam couldn’t get my symptoms under control, I was willing to talk to Dr. L about medicinal options. Even stronger, riskier meds if necessary.
Within a week of starting Proctofoam, I was down to “only” 3-5 BMs a day. My energy had returned. I didn’t think I was losing weight. I felt immensely relieved. Although I was still not completely healthy, I was so far riding out this flare through meds alone. Maybe that was good enough.
Just as my flare was getting under control, I received the results of my latest stool test, this one ordered by Dr. L. I had submitted the sample before my flare. The test showed that my stool had “reduced normal flora”–low levels of gut bacteria. This confirmed the results from the GI Effects Panel of the previous year, and the test propelled me to think again about fermented foods. I was still religiously eating miso soup with breakfast and sauerkraut with lunch and dinner. Now I decided to expand to other such food as well.
I began my next diet experiment: kefir. Pronounced “KEE-fur,” this drink is made from fermented cow’s milk, with presumably little lactose and a plethora of good, healthy bacteria that might help my gut.
Kefir, like the aptly-named sauerkraut, is sour. It tasted like drinking plain yogurt. And yet, like the sauerkraut, I could almost immediately feel it soothing my gut. As its cool liquid traveled down my throat and into my stomach, I had a vision of it coating my digestive system, like the pink cartoon liquid in the Pepto Bismol commercials of my childhood. Something in my gut relaxed when I drank it.
Three days after drinking it for the first time, I had a normal bowel movement.
Not just a solid BM. A normal BM. It looked exactly like the ones from my life before colitis. The only time this had happened, since my symptoms had began nineteen months earlier, had been for one or two days when the prednisone had briefly worked.
It might not be the kefir, I mused. After the roller coaster of the last couple years, I knew not to get my hopes up. Various factors were in flux. I was beginning to taper off Proctofoam, but I was still on it that day. I ate enough variety that I couldn’t know for sure which ingredients were tied to which symptoms. Perhaps my improvement was just a coincidence. Besides, kefir was a dairy product. It seemed doubtful that this potentially inflammatory drink could produce such dramatic results.
But I kept drinking kefir. And soon the same thing happened again. And again.
Within a few weeks of starting the drink, all of my BMs were normal, for several days in a row.
I was in remission.
I was in REMISSION.
I. WAS. IN. REMISSION.
I was off the Proctofoam by now. Apriso, my mild med since December, was my only drug. My diet had remained more or less the same for a month or two. But I was drinking kefir.
It is impossible to overstate the relief and elation I felt. And yet, it didn’t come in a single burst of happiness, but instead as a slow realization, the way you realize a sore muscle is no longer sore, or awake from a deep slumber to gradually discover a beautiful, sunny day. As the weeks passed and my symptoms remained absent, I came to know that I had passed into a new phase of things. My illness, which had ruled my life for a year and a half, began to seem safely behind me.
I felt certain, now, that I had cracked the code. Deciphered my disease. The key to it all was gut bacteria. Something–diet, stress, lack of exercise–had imbalanced my gut bacteria in 2013. That imbalance had triggered an inflammatory response. The key to healing was finding and ingesting the missing bacteria. This theory also explained why different diets work for different colitis patients. Because everyone’s gut is different and there are so many strains of bacteria we all need, different disease sufferers must be missing different ingredients. The puzzle could only be solved through trial and error. And in my specific gut, sauerkraut and kefir must contain whatever bacteria I needed.
Everything else I was doing–Apriso, staying active, avoiding irritants like sugar and caffeine–was helping minimize my body’s inflammation. But balancing my gut bacteria was the way to stop triggering that inflammation altogether.
Remission arrived just in time, because summer was going to be even busier than spring. The months following remission passed in a whirlwind.
Ron’s parents stayed with us for a week in mid-May, as we were finalizing plans for our kitchen remodel. Then we joined my family for Folklife, a jam-packed folk music and dance festival in Seattle. We returned and my aunt from Florida stayed with us for a week. We ripped out our cabinets, unhooked our appliances, stripped the vinyl floor, and set up an alternative kitchen using hot plates and a mini fridge. Friends from Madison stayed with us for a night. Ron’s school year ended and he learned that he was unexpectedly being laid off along with several other new teachers. Both unemployed again, we installed our new cabinets. I interviewed for two jobs, one of them my dream job with the City of Portland. We embarked on a two-week car camping road trip to the Redwoods, my first camping trip, involving a large cooler in the trunk of the car containing my kefir and sauerkraut and various other precooked food, since I was still avoiding too much raw food. On the trip I learned that I had not gotten the dream job. The day after we returned, I interviewed for another job, similar to the dream job but with lower pay, with a local watershed council. We hooked our appliances back up and began installing the new wood floor. Another friend visited. I was offered the watershed council job, which I exuberantly accepted. I scrambled to finish my Dad book while Ron kept cutting and laying the floorboards. He interviewed for his own dream job at a local alternative public school. A specialist from Home Depot installed our new countertop. I started my new job. We installed our baseboards and quarter-rounds to finish the kitchen. Ron was hired into his dream job.
Summer drew to a close. I was still more or less in remission, though there were often echoes of my disease. It seemed to lurk beneath my health. Sometimes I had loose stools. I often felt a low-level fever, probably undetectable on a thermometer–the faint, stirred-up feeling of some impending illness that never quite arrived. I had mysterious aches in my joints that I tried to ignore. A rheumatologist said they were nothing.
But my energy was generally high. And compared to the last couple years, I felt healthy. I could often think of myself as a more or less Healthy Person. My health had faded into the background.
And life was now in place more than ever before. Ron and I both suddenly had good jobs, dependable income, employer-based health care. Our house looked presentable. Our new kitchen shone. My latest book draft was done. My list of tasks was largely checked off.
This was the reality I had been envisioning for years.
Settling into this new, stable reality, I felt myself coming up for air in a daze. I was out of my hole. Looking back, it felt like an earthquake had been shaking my world for the past several years, beginning with Dad’s cancer diagnosis. The tumult had been so continuous I had largely ceased to notice it.
Now, at last, my earthquake had stopped.
Occasionally I encountered reminders that I should never neglect my health.
In July, I happened across an article about a Washington woman who had died from measles. The virus was on the rise because of the antivaxxer movement. Someone had unwittingly carried measles to a medical facility, where this woman had contracted it even though she had been vaccinated. She was on immunosuppressive medication. Her meds rendered her vaccine ineffective. Because of her immune suppression, she died.
Immunosuppressive meds were, I knew, a possibility for me in the future. In my last flare, I had been just a step or two away from trying them, desperate not to return to my isolating diet. I could be that woman someday.
I redoubled my efforts to stay healthy. As my job started, I stuck to my conservative-but-not-too-restrictive diet, eating and drinking my sauerkraut and kefir, exercising regularly. On my first day, a coworker brought cake for my recent birthday. I nibbled at it politely, but soon I told everyone about my illness and eating restrictions. They were supportive. This was too important to hide from them.
I am healthy again. I am so happy to be healthy, so happy every day. Every week, something new happens in terms of getting my body back where it should be.
Two days ago I put contacts in for the first time in eight months, after being told in January that I could never wear them again. It had occurred to me that maybe the optometrist was wrong. Maybe my ailment wasn’t giant papillary conjunctivitis, but just irritation in my eyelids from all the drilling and sanding I had been doing without safety goggles. Sure enough, after months of resting my eyelids, the contacts didn’t hurt.
Putting them on was so liberating. My glasses are a barrier between me and the world. Only in contacts can I be fully present, fully myself. All day I was confident, carefree, almost cocky. I felt large and in charge again.
I haven’t felt large and in charge for years. Not till recently.
My weight is back. 119 just a couple days ago. I feel heavy again–for me–and strong, and, as always with such improvements, relieved. I have reserves. I’m no longer teetering on the edge. I feel more solid and full and grown up and womanly again.
This morning was one of the best milestones. I sprinted. I’ve been running again, the first real time I’ve been healthy enough to stick with an exercise regime in a couple of years. My body has enough reserves so that I don’t feel light-headed or creaky when I run. I have the strength to barrel my way up hills and leap across exposed roots on the trails near my house. My knees don’t ache right away the way they used to, because there’s more muscle to bear the impact. This morning I stopped at a busy road, then the line of cars stopped for me, and I waved and took off, dashing across the road and feeling my own straight-backed posture, the power of my legs as I ran, the smoothness of my stride. I’m finding my stride again.
All the pieces are building off each other. My contacts give me confidence when I run. My new job–which I couldn’t have handled in the throes of my illness–gives me the structure to maintain a consistent exercise regime. My exercise regime gives my body and metabolism the rhythm it needs to get hungry at the right times, to stay on track, to gain weight.
It’s all building on itself, building me up. I feel like the master of my fate again, the master of my body and my life.
I had been sick and gotten better before colitis. Even been sick for several weeks before. But each time I got better, eventually my gratitude for health faded and I took it for granted again. That has not happened this year. Every day, multiple times a day, for months since January, I have been grateful. I marvel at the things I can do that I wasn’t sure I could ever do again. I am exuberant.
In September, Jeremy and Allie visited from Madison. I walked with them from our house to Multnomah Village, a charming collection of shops and restaurants nearby. Allie had been talking about frozen yogurt. I wanted to show them the froyo place, which I had passed countless times since we’d moved here.
Until today, whenever walking past this place I made an effort to hold my breath and avoid looking inside. It was just too much. The sweet smell, the sight of carefree people eating their sugary treats. The whole village was filled with food I largely couldn’t eat. This place was the worst.
Over the summer, though, Ron and I had finally begun to explore the local restaurants. I could eat out again, though my options were still limited. And today, I even wanted to try eating here.
I fixed myself a modest bowl of frozen yogurt and toppings. As I approached the self-serve machines, choosing chocolate fudge syrup and sprinkles, my arms trembled. I cradled my bowl and sat with awe at the window booth across from Jeremy and Allie.
I was one of those people in the windows of the froyo shop.
They watched me take my first bite. The taste was heavenly–a sweet explosion of familiar flavor, lost to me for so long.
I savored that sundae. Afterwards, I gushed to the woman at the counter about my story, what it had meant to finally be able to eat here again.
I couldn’t do this often. I had a disease; my gut could only take so much abuse. But I felt that at this point, I understood how it worked. The sugar from the froyo would kill a certain amount of good bacteria. I needed to eat more sauerkraut, kefir, and miso this week to make up for it, and to avoid other inflammatory foods for a while, and to be diligent about exercising. I would do all those things, to earn my froyo.
But I could eat this again. On my birthday in August, I had eaten pesto, my traditional birthday food. I’d had to forego it the year before because of its cheese and other non-SCD ingredients. These days, I sometimes ate small pieces of dark chocolate. My gut was holding steady.
In October I emailed Megan, one of my best friends from Madison. It feels amazing to be able to eat whatever I want. Losing my health was really scary. I really think I’ll never take it for granted again.
I felt, in 2015, like I had conquered colitis.
But of course, you know that wasn’t true. This story isn’t over yet. There is still much to tell.