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Ulcerative Colitis total Colectomy with Ileal J pouch
I had a total Colectomy with an Ileal anal J pouch back in 1990 and have dealt with it all these years. But now having a lot of consistent j pouch pain, abdominal pain, etc. Diet doesn’t help no matter what I consume. Not I don’t eat anything after 1:00 pm to try to mitigate the pain at night. Up every 2 hours to evacuate. Sleep distress is chronic. Any words of advice as to any more coping mechanisms?
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I had a total colectomy and j-pouch done in 1987. At the time I was diagnosed with UC. The pouch was never very successful, I had chronic pouchitis and was on daily antibiotics for most of the 15 years, and still suffered from anal abscesses, fistulas, and pain.
In 2002 I decided to have the j-pouch excised and go with a permanent ileostomy. It was a really tough decision, because I *really* didn't want an ileostomy. But my quality of life was not what I wanted; I couldn't do the things I wanted to do, I had to wear pads because of leakage and my skin was not in great shape, and I was going to the ER with blockages pretty often.
Have you been to a GI doctor with your symptoms? A scope might be a good idea to see what is going on.
It might not be the solution that you are looking for, and I wasn't exactly jumping for joy when I first got the ileostomy, but I now have a healthy life and it has been worth it.
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5 Reactions@susanf8 Thanks you for your input. I haven’t had the complications like you had so far. I did get it scoped about 4 years ago finding pouchitis with medication subsided it. I guess I need to go in again. So tired of all the Dr’s and hospitals. Again , thank you so very much. Jeff
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2 ReactionsThanks for your sharing
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2 Reactions@jvh1
Let us know how it goes. It sounds like you have had a pretty successful run with your j-pouch; I hope that continues!
Did you call your surgeon instead of your doctors
@susanf8
My pouch has been that bad until recently and they offered that solution but I'm not sure if it's vanity or fear but it scares me but thank you for sharing it's nice to hear a positive with getting it back
@jonnypouchw Thanks for that and, one day at a time?
@jonnypouchw I didn’t talk to a surgeon. They seem to have no answer or solution!!!
Sorry to hear about your discomfort with the J-pouch. I had a ileostomy 8 years ago and at that time decided to go with a stoma and external bag. It concerned me about pouchitis complications and abdominal discomfort. My gastro doctor said I had a 30 per cent chance of not feeling as good as I did after surgery if I decided on the J-pouch option. I was tired of dealing with abdominal pain so I opted for the bag. It has been 8 years now living with a stoma and external bag and I am very glad I did. I work out 3 times a week at the gym, play golf, eat what I want and am enjoying life again w/o abdominal pain. I don't relish the idea of the bag but it is much better than the other option. For some people it works OK but the small intestine was never meant to be a colon. Best Regards, God Bless
@fckaiser Thanks for that. When I had the initial surgery I of course had the bag temporarily for 3 months before they did the reverse procedure to hook up my jpouch and during that 3 month period I had huge problems with the stomach/bad and couldn’t wait to get the jpouch connected. So I am terrified of the idea of reversing the jpouch. If mine fails I will not be able to survive anymore. And I’m ok about that seeing that I am 71 years old and have lived a great life and lucky that I could do so. My wife understands this also.