Laparoscopic Illeostomy Surgery....any advice? : /

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molly m
New Member

Date Joined Jan 2006
Total Posts : 17
   Posted 10/29/2007 6:47 PM (GMT -7)   
Hi everyone,

My name is Molly, I'm 22, and I was diagnosed with Crohn's when I was 12, so it's been a good 10 years now. I had awesome remission for about 5 years, and since then things have been downhill. Long story short, I've been on Pentasa since I was diagnosed, Flagyl, Prednisone, Imuran, Remicaid, Humira, and recently methotrexate. Remicaid worked really well for me for about 6 months, but the time the infusions lasted started to decrease and I guess I built up a resistance. The big problem now is not only do I have flair ups before the time I can have another infusion (I tried Humira and it did nothing) but I have 2 fistulas that get infected and abscess before every infusion. So basically I'm healthy for 3 weeks, and then for the last week or two before my infusion I have fevers, vomiting, you know the whole bit. It's been going on for about 6 months now and it's terrible. Obviously the fistulas need to heal, and the antibiotics, IV form or oral have never seemed to help at all. I feel like my Dr. is in denial about surgery, he's very much against it, so he like makes up things that I should do. He wants to try "intense antibiotic therapy" for the next three weeks as a last try. But I'm not even sure I want to do that because they've tried that 4 times and it's never worked. I'm so sick of living my life like this. Worrying about these stupid things draining, and being in pain from the abscesses is awful. So I guess my question to anyone out there is, is having a temporary "diverting" illeostomy THAT bad that I should be avoiding it with my life like my doctor is suggesting? I know it could end up being permanent, that's always a chance, but my quality of life is so terrible right now I think I'm willing to take that risk. How bad is the surgical pain, or the recovery? I'd really appreciate any information anyone can give me about the surgery itself. I'm really scared, and it doesn't help that I'm getting such mixed signals from my doctors. I feel like people that have been through it themselves are much better sources. Thanks a lot in advance.

Molly confused
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