By February of 2015, I felt healthier than I’d felt in the seventeen months since the onset of my ulcerative colitis. Since December, my symptoms had been improving. Thanks to my meds and my severely restricted diet, my stools were almost normal, and I had no blood and no pain.
Perhaps best of all, by this month my old energy was back in full force. I even felt ready to start looking for a job, after nearly a year of limbo due to my illness.
Since just after Thanksgiving, I’d been on two meds, Apriso and Proctofoam. This was a similar regimen to the one of nearly a year earlier, but this time, I was also maintaining a strict, conservative intake of only whole-grain brown rice, tofu, red lentils, well-cooked kale, toasted sesame oil, and tamari.
This was a dramatic departure from my diet of a year earlier, which had not been anti-inflammatory or even particularly nutritious. That diet’s main focus had been reduction of fiber. It had included many refined grains, meats, and sugary foods like bananas.
My current diet was based on macrobiotics and was much more balanced. And nowadays I was downing a couple forkfulls of sauerkraut with lunch and dinner for probiotics, which seemed to be helping as well.
I worried about going off Proctofoam, my short-term med. But when I tapered off it, to my great relief, my symptoms held steady. Maybe the worst of my illness was behind me! My other med, Apriso, could be taken indefinitely with very little risk. As long as I kept eating this diet, it seemed like I might actually be able to stay healthy.
For the first time in a year, it was possible I’d found the answers to regaining my health.
The only problem was, I didn’t want to stay on this diet.
Several months ago, I had declined a doctor’s offer to go on riskier, immunosuppressive meds, wanting to explore ways of healing through diet instead. And now I’d found a diet that worked for me. Perhaps, if I stayed on this one-meal diet forever, I could get myself all the way into remission and live out my life without any strong, risky meds.
But after nearly three months of eating the same exact meal, every single meal, every single day, I had discovered that healing through diet comes with a steep price.
There was, of course, the monotony. But actually, monotony wasn’t the main problem I had with this diet. Incredibly, my taste buds had adjusted. My single meal was often the meal that I craved when hungry—I got hungry for rice and lentils and tamari. To my taste buds, this meal had come to equate with the word “food.”
Slightly more worrisome was my weight. I was no longer losing weight, which I had been for a year, but on this diet I wasn’t likely to gain much, either. I still wanted to have kids, if possible. To have kids, I needed to gain weight. Something was eventually going to have to change.
But weight wasn’t my biggest issue with this diet, either.
No, the big problem wasn’t monotony, and it wasn’t my low weight. The problem was lifestyle.
On this diet, I could live a life without risky meds…but I couldn’t live the life I wanted.
I couldn’t eat out. Restaurants might occasionally serve whole-grain brown rice or overcooked kale, but for all practical purposes, there were very few ways I could join other people for meals unless they ate at my house. It was depressing to have to explain this to each new acquaintance I met in Portland, or even worse, each new professional contact.
Because we had moved last year, I had lost my Madison community of people who knew me before I was ill. In Portland, everyone I met learned immediately about my illness, because virtually every social gathering involved food.
At coffee for an informational interview, my new professional contact would offer me crackers and I would decline, making a brief, regretful comment that I had a restricted diet. I always hoped this would end the conversation, but often she would raise her eyebrows and mention her own gluten intolerance. This would lead to a pause, and not wanting to sound cagey, I would just go ahead and say the name of my disease.
It didn’t seem like the most professional way to lead into a discussion of my background in soil and water conservation. But because of my strange diet, ulcerative colitis had a way of bullying its way into conversations.
What bothered me even more was that on this diet I couldn’t easily travel or camp. Those two activities were core elements of my being.
I had done Peace Corps, and international travel lit me up like no other pastime. I loved learning about other countries and sometimes took foreign language courses just for fun. For years, I’d had dreams of having kids with Ron and traveling frequently to Africa with those kids, revisiting our Tanzanian Peace Corps villages as a family and perhaps even volunteering there. But over the past year, colitis had caused my dreams of more international travel to recede into the hazy distance, filling me with dismay and anxiety.
And I was an environmental scientist who loved long backpacking and paddling trips. I hadn’t camped at all in 2014 because of my illness and my diet, and I couldn’t bear the thought of going through many more years without camping, either.
We had managed to go on two small trips this winter. In December, Ron and I had flown to Maryland to visit his parents, and a few weeks later we’d joined friends for a ski weekend in Bend, Oregon. Both trips had been a triumph. I was getting out of the city!
But the trips had also made it clear just how limited I was. On this one-meal diet, the only way for me to travel was to essentially bring and cook all my own food. In Maryland, we’d gone straight from the airport to Whole Foods, and I’d spent hours cooking my own food in Ron’s folks’ kitchen, which was exhausting after the long flight.
In Bend, when Ron and I arrived wearily at our Airbnb after a long drive on scary, dark mountain roads, we greeted our friends only briefly before I hastened again to the kitchen and began cooking all my meals for the weekend, which I’d have to bring with me in a backpack when we skied.
Until something changed, I could never again do the kind of travel I loved, and which I’d done many times in Africa: hopping from town to town, staying in guest houses or hostels, making decisions on the fly. It was hard to imagine red lentils or whole-grain brown rice being findable in rural Tanzania. Or even in rural Spain, for that matter. My diet required cities with health-food stores, and living quarters with kitchens, and time to plan, shop for, and cook all my own meals.
So now, after months of my diet’s suffocating isolation, I was finally wavering on it despite what it had done for my health.
Most people who healed their bodies through diet seemed to tolerate far more foods than I could, I had realized. My friend with celiac disease could just look for gluten-free menu options, and although there were many restaurants she couldn’t frequent, she could at least eat out at all. Virginia Harper, who got her Crohn’s disease into remission with macrobiotics, could eat lots of different cooked vegetables and whole grains.
In the fall, whenever I had tried to expand my macrobiotic diet beyond my one meal, my symptoms had worsened. I’d never heard of anyone tolerating only one meal before and sticking with it. What kind of life would I have, if I could never go abroad, camp, or eat away from home?
Not the life I wanted.
Maybe—I couldn’t believe I was even thinking this—those more risky, toxic, immunosuppressive meds wouldn’t be such a bad idea, after all. To my surprise, I was discovering that I might prefer taking toxic meds to being trapped in my home with my weird food for the rest of my life.
But before I added more meds, I needed to be sure I couldn’t tolerate more foods. So I started to tinker with my diet again. Carefully.
I wasn’t going to return to how I’d eaten before colitis. No more sugar for me. But I wanted to expand what I ate to the point where, eventually, I could eat out, travel again, and regain some lost weight.
I just wanted to be able to eat basic staples: hopefully gluten, and meat, and maybe a little cheese or butter. If I could tolerate any or all of those, I would have vastly greater options at restaurants and when on the road. And the changes would help my weight, too.
It was possible that, after I added those basic staples in, my body would rebel and I’d be thrown into another flare. But if that happened, then instead of backing off on my diet, I now planned to revisit my meds with Dr. L. Whatever happened, I never again wanted to go back to my current level of social isolation—my current one-meal diet.
In February of 2015, I began to experimentally add things to my meals here and there. Meat was the first addition: the occasional sautéed ground beef, or a strip of bacon (O wondrous, glorious bacon!) on the side of my special meal. Meat is easy to digest compared with starches, and I could use the fat and protein. Also, I knew I was probably low on iron after the past year of blood in my stools.
I was still tapering off Proctofoam, the short-term med that had helped me over the past few months. I made sure not to add any meat within a week of changing my Proctofoam dose, so I could watch for results. And to my relief, when I added the meat in this cautious way, I didn’t notice any increase in symptoms.
As the cherry trees put out their buds and the days continued to dawn bright and blue, and my energy and intestinal comfort and overall happiness continued to hold steady, I felt optimism about my diet decision. I might just get away with this!
My health was returning. I knew more, now, about how to be healthy. Possibly, hopefully, I could expand my diet and still never need stronger meds.
But after enduring my diet-imposed claustrophobia for three months, I was now willing to risk needing them.
