My take down was 8/20/2012 and things have only gotten worse - just in a different way. I had to start out 2/13/11 with a colostomy because I was misdiagnosed for over 21 years - great! I got C-diff, had a TON of complications, including peritonitis after the first surgery, and spent 3 1/2 months out of 8 in the hospital. When the pathology came back, it was UC so I had to have MORE surgery. I was so extremely ill that when the colon came out I was on TPN for 4 days prior to and 8 days after the surgery. More complications followed. We planned the j-pouch for 9-12 months down the road but I had to have it ASAP so spent my 25th wedding anniversary having surgery. I then went into renal failure, had to have fluids 3 times a week, and finally had the take down Aug. 20, 2012 but with MORE complications requiring surgery. I didn't want to have any surgeries to begin with and refused the 1st one 3 times before I finally got nagged into it. I wish I'd never done it.
Now I have VERY VERY noisy bowels, still got to the bathroom 4 times an hour, and have terrible pain. I don't have pouchitis, take VSL#3, Beano, and anything else to stop the gas but nothing works. I don't eat all day because I don't want to deal with the issues then am up 1-4 times at night. I can't get anyone to treat the pain because in our government's infinite studpidity they've decided it's SO much more important to protect those few people who ABUSE the drugs and die than to protect the MILLIONS of us who need them to LIVE!
I'm an accountant and I don't see myself ever returning to work if I can't stay out of the bathroom and my guts make LOUD noises in the middle of meetings with clients.
I want my j-pouch reversed because at least with an ileostomy I won't have butt burn, make horrible noises in the bathroom, and can actually function. I've talked to my surgeon and my GI over and over and they keep telling me I'll be happier with the J-Pouch. This is MY LIFE and I think I have a right to choose how to deal with a lifetime of curses heaped upon me.
Anyone have any ideas how I can convince them to reverse the surgery so I can have a life? I'm 47 and miserable.
~T
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