My doctor hates me (ulcerative colitis)

[Quicksilvre]

Colazal and Remicade haven't done anything for me over the last few weeks, and I've just gotten off of prednisone and Imuran. So my doctor prescribes some of these:


I get to start them tomorrow night...lucky me.

So, anyone else have to do enemas? This is my third trip taking them; I had been off of them for ten months.

[Blarg]

No thank god. How does one get colitis, much less ulcerative colitis?

[Thremp]

Whew. Good thing I didn't take any more latin and resisted the urge to use google... or goto med school.

Thankfully, I'll remain blissfully ignorant of how horrible this is until it happens to me.

[Rearden]

[ QUOTE ]
No thank god. How does one get colitis, much less ulcerative colitis?

[/ QUOTE ]

[shemp]

I'm not a doctor. I don't play one on the net. What I'm about to say is probably stupid and I don't mean to insult your physician who has likely covered this base if warranted. Please don't interpret the following as medical advice.

http://www.celiaccentral.org/What_is...QLxYAod8zqdYw/

Celiac disease may be misdiagnosed as "ulcerative colitis"-- embarking on a gluten free diet may relieve suffering of those with celiac (or at least I read that on the net).

[Quicksilvre]

[ QUOTE ]
No thank god. How does one get colitis, much less ulcerative colitis?

[/ QUOTE ]

That is the question. There's no one totally accepted explanation, though the most common one you hear is that it's an autoimmune response--you get an infection, your immune system cleans it up, and then it snacks on your large intestine for dessert. (There are places that won't let you donate blood if you have UC.)

I've tried at least a half-dozen medications. Either they work but are a pain in the ass (I've taken 10+ pills a day every day since diagnosis, plus I take something that's IV only), or they work but don't work if you take certain other meds (Imuran, which was great for a while), or they work and have side effects (osteoporosis from prednisone), or they don't work. Cortisone falls into category 1--you have to squirt cold goo up your bum and lay on your side for a half-hour so it can be absorbed into your colon. This thread might have to be moved to BBV4Life.

So...yeah. Anyone else with colitis/UC/Crohn's that wants to exchange life stories?

[Quicksilvre]

[ QUOTE ]
Celiac disease may be misdiagnosed as "ulcerative colitis"-- embarking on a gluten free diet may relieve suffering of those with celiac (or at least I read that on the net).

[/ QUOTE ]

I don't remember hearing about this, though I had heard that celiac disease is very frequently misdiagnosed. Unfortunately, no go. There are blood tests that pick up specific markers for UC and I came up positive.

In any case my problems (except during remission) usually come from fried food, high-fiber food, and (when I'm at my worst) dairy. White bread, buns, bagels, etc. haven't given me problems.

I appreciate you trying to get me out of this, though.

[PLOlover]

you could always go to a naturpath herb guy, I mean if you're not getting results with the m.d. then what have you got to lose.

[Quicksilvre]

Oh, I get results from prednisone and cortisone, they're just unpleasant to use.

I'm reluctant to go down the natural/herbal/organic route, since I tried something like that early on. It didn't do jack and it cost $250 a month, not covered by health insurance.

One of the members of my mother's family has GI tract problems, and he controls it entirely by diet. The problem is, everything he swears by are the things that I've been specifically told not to eat by multiple doctors.

[PLOlover]

I'd say the worst case scenario is that you are one of the people who have symptoms from gm foods. it's so new no one would have any clue what is going on, and gm foodstuff is in almost all 'normal' US foods.