The other day I was sitting at my gastroenterologist's, talking about poop, and she asked me a question about mine. "I'm not completely sure," I said. Maybe twice a day, maybe three times, maybe a little more?
It's good you're not obsessed, she said, and I wondered whether she was right. I won't find The Definitive Cure if I am not obsessed, and I feel a little guilty about that. On the other hand, becoming obsessed with poop takes a lot of time and attention, and there is a great big beautiful world full of interesting people who need my attention, too. Still, I am not satisfied with the amount I have learned, and the amount I still don't understand, about Crohn's disease.
Last night I went to a presentation about Crohn's in a hotel conference room. It was sponsored by the makers of Cimzia (TM), and it will perhaps not surprise you to hear that one of the speakers was a patient who struggled with the disease until at last a doctor prescribed her Cimzia, and now she's doing great. The other speaker was a Mt. Sinai gastroenterologist named Tom Ullman, and it was he I was there to hear. He's friendly to Cimzia and the other anti TMF drugs, but didn't seem to be beholden to them in a way that ruined his credibility. Not too far into the presentation, after he'd encouraged us to ask questions, I asked him what the mechanism of action of this disease is. That's the most frustrating part. Nobody knows what causes it, or why it shows up in some people when and where it does, why it manifests differently in different kinds of patients, what might trigger it. This is the part that makes me want to start taking organic chemistry and immunology, because that is such an unsatisfying answer.
I wrote some stuff down on my index card for further research -- some doctors trying different kinds of treatments, some molecules and proteins I want to learn more about, etc. But there were two big things about last night's presentation that stayed with me.
Dr. Ullman's philosophy, he said, was that people with Crohn's disease should get to a point where they think about it as much as they think about cavities. Sure, daily care and attention, and a couple of doctor's visits a year, but otherwise, having this condition shouldn't take up too much of your life. Hearing this settled part of me down. I have been phrasing this in my head as a binary decision: either I am cured, and I don't need to worry any more about Crohn's disease, or I have it, and I am failing myself and the world if I do not obsess about it. Maybe that's a false choice. Maybe it can be more like tooth decay or gum disease.
The second thing was how really bad Crohn's disease can be. I've read about this on the internet, of course, but being in a roomful of people, some of whom have had huge hunks of their colon removed, or been on Prednizone for long amounts of time, or who can't go out of their homes because they must stay near a bathroom at all times, holy cow. This is not how it is for me, and it is my solemn intention to do whatever I can never to get there. I'm basically very close to the tooth decay stage right now -- a mild medicine is working pretty well for me and there's the promise and the realistic hope that it will work perfectly. This can be so very bad. I hate that there's no clear answer available, that for all that is known the variation in individual responses to the disease and to the various treatments is vast and inexplicable and unfair. That part, too, makes me feel like I am too lucky and too smart to give up trying to figure this out.
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