Well, March 9th I had a total proctectomy with end colostomy. My surgeon said it would probaby be around 5 hours for the operation, it ended up being 10 hours! She said everything went perfectly, however, the disease was so severe, it took that much longer to get everything out. She also told me that without the surgery, my vaginal walls and my rectum would have been "communicating" in a couple months which apparently is as bad as it sounds. Anyway, she said the rest of my intestines looked "pristine" and that the surgery effectively cured me of my Crohn's (I know it could come back elsewhere). She said there are some people with Crohn's Colitis whose disease never comes back anywhere else- I'm hoping I'm one of those!
So anyways, I now have a sigmoid colostomy and it sucked at first but then it was great and now it sucks again- all of this happening in the span of three weeks! My problem now is that I keep having leaks. The stoma looks like it's at the center of a volcano caldera. I'm going to try and get some convex wafers but until I can, I'm trying so hard to get the Eakin seals and the Adapt Paste to work with me and I'm not having much luck. I think it's because the stoma is shrinking faster than the swelling is going down. Maybe I should go on like a juice fast to lose a couple pounds off my stomach? Who knows. I just hate that my skin is painful from so much changing and pulling and having poo sit on it.
My other problem is that the nurse did something called "cresting" on it last week when the skin was irritated from poo where she put some powder on the skin and got it wet with a wipe. I'm pretty sure I had an allergic reaction to the stuff so now my skin is red and painful and unhappy and I try to let it sit open and air out but that doesn't help enough.
Oy. I know this is better than I ever was with the fistulas and abscesses and skin tags and lymphedema and pain but right now Im not feeling so wonderful!!
Laurenne, 25 Graduate from University of California, Davis. BA-Anthropology
Dx'd w/ IBS and CD in 2002. Three abscesses that are now fistulas, with three setons!
On: Zoloft, folic acid, b12
Tried: LDN- Did nothing good, Remicade- allergic, Humira- no reaction
3-9-10: Total protectomy with end colostomy. Trying to get used to this whole new way of "going"