Been in here since wednsday. i hate it! my soul must have missed the day when the good bodies where handed out. damn
Well i got out Sunday night and pretty much slept all day monday( had no 1 wanting to wake me to take blood and all). Today went to school and requested some medical leave, so now i got 2 months b4 i go back and have to start yamaha all over again.I had illeitis - Crohns of the illeum, basically. Had surgery 10 years ago to remove the bad plumbing and it has been OK since.
Two things I find help me - Fish oil caps really seem to soothe the system, and my doc put me on Cholestryramine.
Here is a link to the medication I am on. For some reason it does not seem to be used much. I had not heard of it until I moved to Colorado and met an old time GI doc. When I lived in California, the fancy docs at UCLA never put me on it and this simple and cheap medicine has helped me the most.
Good luck to you, I know personally how miserable Crohns is. I count myself very lucky these days, no recurrence post surgery after 10 years.
It took me years to find a doc that could tell me what was wrong, finally around age 21 if found one that was able to help but i was heavily damaged so I don't have much left on the inside. I am 36 now and it's looking like it's come back with a vengeance.Aw man, I am sorry to hear that. I had a fistula too - but it did not require that much additional removal - about 10% of my colon.
The thing the Cholestryramine does is greatly reduce the irritable colon that results from all the issues upstream in the small intestine. It is no cure of course, but it does help make things more comfortable. Remicade does indeed cost an arm and a leg. I was never deemed worthy enough for that I guess.
My opinion is that the disease is due to the body turning on itself - an autoimmune issue. I first was diagnosed with Crohns when I was 17, I am 47 now. It does seem that it became less "aggressive" as I got older. My thought is that my body is just getting a bit worn down, less "reactive" and it is calming down in general as it goes slower and slower :laugh Hopefully that is something to look forward to - a unexpected benefit of getting a bit older.
In any case, my best wishes to you. It is a shame prednisone is not a not term drug that can be taken. It sure makes you feel like superman when you are on it.
Hmm I am going to have to check into seeing if the school offers any insurance. My wife gets insurance from her work in march.I think there's an alternative to Remicade (apparently there's half a dozen drugs that do the same thing - I've rheumatoid arthritice which is caused by the same sort of auto immune disorder as your problem and mostly uses the same medicines). I haven't started on it yet, but there's one option that's injections and is about $15k per injection. There's another that's an infusion and is much more affordable, though I don't know by how much (my health ins covers all of it). Its a bit annoying because you've gotta be hooked up to the machine for a few hours, but you only need infusions every 3-4 weeks IIRC. I can't remember the specific names though.
Prednisone is good stuff too - right now I'm on a bunch of that and i shoot myself up with methotrexate once a week.
Anyhow, you'd probably be best off getting insurance - your school probably offers it for a fee. I know its partially built into my tuition, then there's a moderate extra fee. Its still not cheap, but way cheaper than a major hospital bill.
A friend of mine has very bad crohns and she's won multiple AMA championships and run a marathon so keep your chin up:thumbup