Published On May 3, 2006
I SOMETIMES WONDER WHETHER MY GASTRO-ENTEROLOGIST THINKS I’M DIFFICULT. My colitis is in remission, but I take only two of the nine pills she’d like me to swallow each day: an anti-inflammatory in the morning and an immunosuppressant with dinner. I’m not usually stubborn about following doctors’ orders. And though the pills are expensive, I’m not trying to save money. My rationale is simple: I think I’m cured. I’m hoping it’s just a matter of time until I can convince her too.
More than 10 years ago, I developed proctitis, an inflammation of the rectum. Then, two years later, I was hospitalized when my entire colon became inflamed. At the same time, I was diagnosed with the intestinal parasite Giardia lamblia. I was spending more time in the bathroom than a tile installer, and I’d lost more than 10 pounds.
Over the next few months the parasite kept reappearing, and my doctor couldn’t figure out why. She finally decided I was somehow getting reinfected through food or drink. I installed a water filter in my kitchen and stopped eating out. After two more hospitalizations for recurrent colitis and further weight loss, I was referred to an infectious-disease specialist.
After ruling out all other possibilities, the specialist surmised I’d never totally gotten rid of the parasite, and he prescribed a different medication. The Giardia was eradicated but not my colitis. I spent several weeks in another hospital where yet another specialist administered an immunosuppressant (to calm the inflammation, which is triggered by immune response) while monitoring me for convulsions, a possible dangerous side effect. The way I understood it, I would need to have my immune system shut down for the rest of my life. But that sounded a lot better than surgical removal of my colon, which my gastroenterologist had mentioned.
At each checkup, I discuss stopping the medications. I haven’t had colitis for several years, and my last colonoscopy was fine. But my gastroenterologist is adamant. Statistically, my chances for staying that way without medication are not good, she replies, and then reminds me how ill I was. Still, I argue, the colitis was a fluke, caused totally by the Giardia. “No,” she says. “You had proctitis when I first saw you, before the Giardia.” Even that doesn’t convince me—scientists don’t know for sure what causes colitis, and I find it too much of a coincidence that I got a full-blown case only after contracting the parasite.
At one appointment, I try to engage her in “what ifs.” “If I’m on such a low dosage now and I’m doing okay,” I venture, “what if I just try stopping the pills?” She warns me that if I get sick again, I may really lose my colon. “What if I try taking just the anti-inflammatory then?” She disagrees, and I wonder whether I’ve crossed the line to badgering. Or is this how doctors and patients are supposed to interact?
Try as I might to change her mind, I think she understands. She is ever respectful, which confirms for me the true nature of our relationship. Although I look for a furrowed brow, a surreptitious glance at her watch, a shifting of weight from one foot to the other, these signs never appear. If she is indeed frustrated, she never lets it show. For that I am grateful.
First Person originates at the other end of the stethoscope, presenting essays and commentary from patients, consumers and other medical outsiders. Proto invites your contributions; please send ideas to the editor.
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