When this thing began, I kept a journal - a medical log, rather - of the progression of the disease. Diagnoses, drugs, successful and destructive food combinations, endo- and colonoscopy photos... I thought I was going to discover some profound pattern in my body's behavior.
The Crohn's baby responded: fuck you and your predictably-repetitive-universe hocus pocus - I will ransack your preconceptions of bodily behavior and mobilize a stealth squadron of endothilial destroyers from your throat to your ileum, and you will never know my next move! ... And so I abnegated, and stopped.
Ten years later, having overcome denial and admitted that an MD-PhD will probably be my undoing, I'm PhD-bound. And I know that there are other Crohnies in the world who are doing the same thing, but there is no support network. There is no way to gauge how much give to take, or how much push to shove.
So here I am, once again making record of how this process proceeds. It is my hope that it will serve as a resource for some, and that it will inspire guidance from others.
hello there. i've been enjoying your blog; thanks for it. good luck in the wilds of remicade. don't let the c-baby get you down!
ReplyDeleteyours,
kara
http://semprelaltracosa.blogspot.com
Hi. I was diagnosed with Crohn's after a colonoscopy in 2005 and immediately put on Pentasa, which I've been taking (eight pills a day) ever since. I'd had symptoms since 2000.
ReplyDeleteAt first, this was no big deal. I hardly ever felt sick, and I still ate everything I wanted. Once in a great while, I'd feel queasy or have a reaction to something I ate. Then, a year later or so, I would get violently sick everytime I drank regular coffee, so I gave it up. Then a while after that, I couldn't drink decaf either, so I gave that up.
Today, I am leary of dairy products, I hardly ever have caffeine (though I still have chocolate in smallish doses) and I avoid high-fiber foods (except fruit, in small amounts). And I am taking an Immodium pill once a week, no joke.
I totally get what you mean about your body having a mind of its own - so frustrating. And I'm glad to read someone else's experience.