After a month of resisting, I had decided to try the dreaded prednisone.
My doctor had first offered me this drug after three other med regimes had failed to help my ulcerative colitis. I had balked. All the previous drugs had been gentler, and I was worried about side effects. Also, I worried about masking my symptoms—I wanted to understand why my colon was inflamed, why I had this new disease. After declining prednisone back then, I had spent the following month on the Specific Carbohydrate Diet, which had helped me more than any med so far.
But the diet had still not brought me into remission. And it had given me an inkling of how long diets take to work: whereas meds often help within a week or two, the SCD, if it had worked, might have taken up to two years to bring me into remission.
I still wanted to try other diets, but I was getting anxious about the passage of time. Every month that passed was one more month Ron and I couldn’t try for a baby. I was becoming desperate. While it would be risky to get pregnant while inflamed, I was realizing it would also be risky to get pregnant while a couple years older than I was now.
So my resolve about prednisone had wavered. A possible quick fix was beginning to gleam in my mind’s eye. I mean, what if the doctor was right this time—what if the prednisone did work for me? For some people, this drug could apparently pop their bodies out of a flare. Remission might last months or even years. That outcome seemed unusual from what I had read…but wasn’t it at least worth a try?
I emailed my doctor and requested the drug. I explained my new plan: I would stay on the Specific Carbohydrate Diet for now—I wanted to be scientific and only change one thing at a time—and I would take his recommended two-week course of prednisone.
There couldn’t be much harm in two weeks, I thought. I’d met lots of people who’d been on the drug for two weeks. A few had had no side effects at all, although most others had terrible symptoms like weight gain, puffy cheeks, depression, mania, and insomnia. But maybe I’d be lucky. And if I hated it, I could just go off it again.
Taking the drug was undramatic. I swallowed the small white pill and moved on with my day. I crossed my fingers that it would work for me.
And it did work, at least at first. There was no denying it: within a couple days, I had a normal bowel movement. A day or two later, it happened again. Within a week, normal or almost-normal stools were happening more often than not. I began wishing I had tried the drug much sooner!
And I began to feel a dramatic elation, the way I felt when the clouds parted after a long rain, when everything is dewy and green and everyone beams at each other in the sunshine. Perhaps this could be easier than I’d thought. Perhaps I’d been making my illness too complicated by resisting my doctor’s advice.
There were side effects, to be sure. I missed a night of sleep, unable to calm the adrenaline surging in my veins. My stomach swelled until I looked almost pregnant, and my face began to look strange, with a hint of the puffy cheeks people described. But nothing could take away my elation. I felt so much more healthy. I reveled in that.
Emboldened, while still on the prednisone I began to add new ingredients into my restricted diet. Cooked peaches, their mushy sweetness a sensuous treat. Raw avocado, a true taste of summer. With each new addition, things still went fine in that first week. I often had normal BMs, thanks to the miraculous prednisone.
Then one day I began to get cramping. And blood. And diarrhea.
That 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. 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.
Sobered, I tried to figure out why the med had stopped working. I thought I did figure it out. The previous day, I had failed to peel my carrots, peaches, or squash, because my confidence in what I could eat had been bolstered by my newfound health. I had thought maybe I could skip a couple stages of the Specific Carbohydrate Diet now, eat something more advanced.
That was the only real change I had made to the diet in the last few days—so, I thought, the fibrous skins of my food must be the culprit. Too much fiber, albeit cooked, was probably scraping my colon.
I was wrong: two other changes had occurred that could also have increased my symptoms. It would be years before I realized my own error in overlooking them.
First, the day before my symptoms had worsened, I’d had my first-ever acupuncture appointment. It’s a testament to my ignorance about Eastern medicine, back then, that it didn’t even occur to me that the acupuncture could have caused my diarrhea. This didn’t occur to me even though I had gone to acupuncture to treat my colon. I’d heard acupuncture might help, but at some fundamental level, I must not have truly believed in its powers. I simply did not believe that tiny needles stuck into my extremities might actually affect my colon so dramatically as to override the prednisone.
And secondly, on the same day that my bowel movements worsened, my period had started. I can see this in the health notes I was keeping at the time. Again, as I look back now, I am incredulous at my own ignorance. It simply did not cross my mind that this dramatic hormonal shift, which affects the whole body, might also have caused my diarrhea.
It could have been any or all of these: more fiber, the acupuncture, or hormones.
In my defense, I was new at this. And exhausted. And disheartened by my change in symptoms, which marked the latest dramatic dip on my never-ending roller coast. And for months, I had been focused only on diet and meds, which were each a handful to learn about all by themselves. Chronic illness has a steep learning curve. I wasn’t yet used to juggling all the pieces, all the knowledge you have to take in about your body and what might affect it.
At any rate, my conclusion, when my symptoms worsened, was that prednisone alone would not bring me into remission. I decided I must not be one of the lucky few who can just zap their colitis with prednisone. I needed to keep peeling all my fruits and veggies—I thought—and I would need some kind of special, restricted diet just as much as I would need any med.
And despite my errors in logic, this conclusion was largely right. Whether it was diet, acupuncture, or menstruation that had truly kicked me out of remission, prednisone alone was not enough to control my symptoms. This drug helps many people, but it was not my cure-all.
It made me glad I had not merely followed my doctors’ advice. If I had listened only to them, perhaps just avoiding raw salad and maybe dairy over the last few months, I felt sure that the prednisone would have been much less effective. Perhaps it would never had led to normal bowel movements at all, because my diet would have been so irritating to my colon that nothing would have helped. The doctors would then have encouraged me to try immunosuppressants; and, like many other patients, I would have gotten sucked into the cycle of more and more powerful and risky drugs.
I tapered off the prednisone, humbled and dutifully remaining on the SCD for now. My flare worsened as I tapered off, so that by the time I was off it, my symptoms were worse than they’d been before I began taking it. Not only had prednisone not helped me in the long run, it seemed to have made things worse.
Through my exhaustion and disappointment, I did another round of research and made the final plans for my next big experiment. There was nothing to do but square my shoulders, push up my sleeves, and keep trying to find something that did work.
