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.