It was mid-May of 2014, and I had a choice to make.
Two and a half months after diagnosis, I was no closer to getting my ulcerative colitis under control. I had switched meds for the third time two weeks ago, after my sigmoidoscopy, but the new meds weren’t working, either. My condition was even worsening.
I wrote to my new doctor:
Within a day or two of the medication change I began experiencing 2-3 bms per day, more urgency, diarrhea, and occasional tenesmus. In the last few days my symptoms have worsened: 3-4 bms/day, a great deal of urgency, stomach cramping, diarrhea, and occasional blood. I‘ve also been fatigued for the last 2 weeks since starting the Canasa. I’m too tired to exercise except the occasional walk, and my work is suffering too.
Something was still wrong…and it was getting worse.
It all gave me a feeling of groundlessness. And panic. Despite all my research, there were still gaping holes in my knowledge. What had caused my disease? Was I still doing whatever had caused it, and thus repeatedly triggering an inflammatory response? And why wasn’t my body responding to meds?
I knew it was common for people with colitis to struggle like this, often for years. I had hoped perhaps I’d be different—I was young and athletic—but now I couldn’t stop myself from worrying. Sometimes it was hard to keep my worries from spiraling out of control.
The doctor asked if I wanted to try prednisone. As I read his words, despite my anxiety about my ongoing flare, I felt a gut-level resistance. No, I did not want to try prednisone.
The Slippery Slope
There were several reasons for my aversion to this med I’d never tried.
First, I’d been warned against prednisone again and again. I knew many people who’d taken short courses of it for various ailments, and they had overwhelmingly urged me to steer clear of it. Have you tried the dreaded prednisone yet? one friend had asked over email. Don’t take it, whatever you do.
Prednisone is a generalized steroid. Rather than targeting the colon, as all my meds had done up till now, it affects the whole body. Its aim is to reduce inflammation, but its side effects often include sleeplessness, nervousness, mood swings, and rapid weight gain around the stomach, face, and neck.
It is generally very effective for calming down proctitis, my doctor wrote. We do not use it long term due to its effect on bone, glucose metabolism, among other things, but in the short term is very reasonable.
His words didn’t make the drug any more appealing.
Secondly, and paradoxically, I was also afraid to take this new drug because I was afraid it wouldn’t work. None of my meds had worked so far. Taking prednisone would mark a shift into drugs with more side effects, and if it didn’t work, I feared what other, even stronger drugs might be next. I’d always been leery of conventional medicine in general, and now I sensed myself on a precipice, slipping into a world I desperately wanted to avoid.
And third, I thought it seemed ham-fisted to move on to prednisone when I still didn’t understand the root cause of my illness. As long as I didn’t know what was triggering my inflammation, all we could do was keep trying different drugs that stifled my immune response. But what was my system responding to?
No one in my family had IBD. It seemed logical that something I’d done might have unwittingly triggered my disease. This thought sometimes plunged me into tortuous regret, but I still wanted to find out whether it was true. If I was doing something that caused inflammation and took drugs that masked my symptoms, I might keep doing whatever it was and do further damage to my body.
This thinking seemed especially important because I wanted to get pregnant. My doctors had said that in general, a person could safely get pregnant with colitis, but because of my natural thinness, in my case it might be best to wait. Before colitis, I’d been advised to gain weight before getting pregnant. Now, my colitis was making me lose weight.
Prednisone would be a short-term solution, if it worked at all. Remission might last only a few months. I’d still be no closer to understanding my disease, what made it come and go, or how to prevent it from getting worse. I wanted a longer-term solution—for my own health and for the health of a possible future baby. I didn’t want to have another flare during pregnancy and be forced to take prednisone again.
A Diet Option
I should pause here to say that there are times when prednisone is warranted. At the time my doctor suggested it, I didn’t yet understand that there’s danger in prolonging severe colitis flares. My doctor knew about that danger and wanted to give my body a break from its ongoing inflammation.
But in my case, fortunately, I had found another option, and my doctor was willing to let me try it first.
The other option was a diet. My current low-fiber diet of refined grains, meat, and peeled, mushy vegetables didn’t seem to be doing much. But by now I had heard about various other diets, including an older, more tried-and-true diet for colitis and Crohn’s and related diseases. So I asked my doctor for more time:
I would like to try the Specific Carbohydrate Diet, described on this website: www.breakingtheviciouscycle.info. This is a popular diet for people with IBD and works for many (though not all). It’s used in addition to (not as a substitute for) conventional meds—so I’ll stay on my meds. …I think if it works for me, I’ll probably see positive results within a month or so… Since I’ve now been sick over six months and on largely ineffective meds for three months, this seems worth a try! Let me know if you have any objections.
The doctor’s response was lukewarm. There is no good evidence that dietary changes will reduce the inflammation from your proctitis. With that said, I have no problem with you trying such remedies.
By now, I knew this was the closest any doctor would ever come to a glowing endorsement of what I was about to do. I put off prednisone in hopes that it would work, and that it might give me some answers at last.
