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.
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.