Indeed, big gaps in info is pretty much what I've experienced in the last two years. When I was diagnosed, I got handed a pamphlet about crohn's. My personal doctor does the best he can, but finding a decent G.I. has proven a bit more challenging.
I was diagnosed with chron's and/or U.C. in July of 07. I had been sick for several weeks. It had only happened once before, I'd spent about six months extremely ill in my early 20's.......my doctor at that time was insistent that I must have some strange virus or maybe I had problems with stress. I'd lost close to 40 pounds by the time things more or less cleared up on their own. When it started again, I was pretty terrified.
It would seem I'm rather lucky. After an initial stay in the hospital, I was put on asacol........which took awhile to kick in, but has done a great job up until now. I was referred to a GI around October of 07, my first visit he met with me for about 10 minutes and kind of glanced through the paperwork my doctor had sent in. The second time I met with him was when I had a colonoscopy. At that time he said he couldn't find any active cronh's, and would like to take me off of my medication to see if I'd flare up again......I consulted my personal doctor, who decided that would be my last trip to that particular GI, lol.
Other than that, I'd say I've felt pretty good for the last year or so. I'm grateful for every day I get, because it could be a lot worse. My only real complaints at this point are frequent ulcers in my mouth that make it hard to talk, and pain in my right hip that seems to be related. One of the more interesting side effects is my weight, I was always a skinny, sickly looking kid.........when I was diagnosed I weighed maybe 150 pounds, and I was in good shape, I'd been working on a landscaping crew. I've picked up almost 60 pounds in the last two years, although that seems to have leveled off. I don't know if it's just because I can actually eat without feeling sick for the first time, or what....Doc says I might want to lose a few pounds........but I told him maybe I need a "cushion" for if I get sick again.
Anyhow, that's my story and I'm sticking to it as they say. Everyone have a good day!!