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loop vs end ileostomy question, failed jpouch.

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Posted 11/11/2014 4:54 PM (GMT 0)
I cuurently had to go back to ileostomy after issues of hole in my jpouch about 10 months ago. I had surgery in August to try and fix the hole but it failed. I will be trying one more procedure to fix the hole, if does not work i am keeping my ileostomy, no more surgeries for me. Jpouch has had issues basically since 2008 when i got it. My surgeon said I can keep my loop and jpouch could stay as is and i will be fine. I know there is option of totally removing it but I know thats a huge surgery and recovery time which i dont care to do. Does anyone have any experience with a long time loop and disconnected jpouch thats still in body? I have alot of mucous discharge from the bottom that i must release at least once a day, but i hear thats normal...
Posted 11/19/2014 7:10 PM (GMT 0)
anyone?
Posted 11/19/2014 7:28 PM (GMT 0)
I would recommend asking on j-pouch.org, there are a lot of members there who have their pouches either removed or disconnected (or both).

I don't have personal experience with it, but from what I've read, the people who do poorly with a disconnected pouch are people who either have chronic pouchitis/cuffitis that doesn't resolve with diversion, or people who have loop ileostomies that are very difficult to manage. It sounds like your pouch issues don't have to do with pouchitis or cuffitis, which bodes well for leaving it in, especially since you've already been diverted for so long.

Healthy bowel always produces mucus, releasing on a daily basis is normal.
Posted 11/20/2014 5:22 AM (GMT 0)
I had never experienced this too. I only have permanent colostomy and I have never experienced any problems with it so far.
Posted 11/20/2014 8:16 PM (GMT 0)
ive been a member of that site since my initial surgery in 2008.. Thanks..
Posted 11/21/2014 5:27 PM (GMT 0)
Yes, I have experience... unfortunately. After it was discovered that problems with my jpouch were due to mechanical issues... probably cause it was built work.. I was so sick.. that my surgeon at CC disconnected my jpouch and put in a loop ileo. I was far too sick for any more complicated surgery at the time. He said after six months if I gained weight and got healthier I could opt for a pouch redo or removal. I chose to keep things as they were. However, I had significant diversion pouchitis, which just kept getting worse. Not only massive amounts of mucous discharge and a need to go to the restroom many many times a day, but horrid pains. They tried lots of various meds etc.. and nothing helped for long. So after about 18months of being disconnected, I chose to have the jpouch removed. Yes, it is one massive operation. And I did suffer with lots of complications. With that said... I would still do it again. My overall health is dramatically improved after getting rid of the mutant jpouch!
Posted 11/21/2014 5:54 PM (GMT 0)
No new pains. Mucous varies. Some days once a day. Some days several times a day.
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