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Hi All,

Rather than repeatedly bugging Mysticobra personally, I'll ask the group. If it pertains to you, what was your experience going from the pouch back to an end ileostomy. Specifically, did it function as well, better, or worse than your first end ileo? My original end ileo worked great. I had one bowel obstruction early on then perfect function for the remainder of the year I had it. Ate everything, gained weight, exercised. The loop was another story. That was a nightmare with dehydration and frequent SBOs, but I also had pelvic abscesses complicating matters.

I ask because I was told by my GI (Dr. Shen) that he sees more difficulties in patients on their second time around, and that the ileo doesn't work as well, but he didn't elaborate. I wonder if he is biased by the philosophy to keep the pouch at all costs, but he is very experienced so don't want to dismiss his take on it. My CRS says that this has not been his experience. That his patients have had success with returning to the ileo. It's a terrifying thought that opting for a permanent ileostomy may not make things better. I mean, there aren't any other options at that point. I'm screwed. So much for the UC "cure." What a nightmare.

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A continent ileostomy, like the K pouch, is an option for those whose J pouch needs to be removed. Many people, me included, have opted to get a continent pouch and have had favorable results.  I am very I made that choice.  This procedure is not suitable for everyone and there are complications that may develop, most of which can be corrected by surgery or non-surgical treatments.  I recommend that anyone who might be interested in this procedure consult with an experienced surgeon who does them.

I respect Dr Shen but I also think that in his gastroenterology/ endoscopic subspecialty practice he sees all the most complicated cases referred from other centers and multiple surgeons. Perhaps consult with his Columbia colleague Dr. Kiran for a second surgical opinion?  He performs continent ileostomy procedures such as BillV mentioned and could explain what risk factors exist, if any, that might complicate a 2nd end ileostomy for you as well as other surgical options.   (I personally will head right back to him for surgery if I run into problems with my  J-Pouch requiring revision.)

Thank you both. I don’t think I’d go for a continent ileostomy or a pouch revision. I wouldn’t want something that needs to be cathed and has the potential for some of the same issue as the j pouch. Same thing with revision. I’m done. This pouch has been nothing but misery and I can’t imagine going through multiple surgeries again just to be in the same position, or worse. Years of life have already been lost. I’ve been told my anatomy can be problematic for a pouch so I am without any confidence that a redo would work better. Also, I have PSC so each surgery may make a future liver transplant more difficult. I don’t love the idea of having a permanent ileo for the next several decades but the decision would be easier if I now wasn’t worried about the end ileo not working. For now, I’ll keep going with the sinusotomies but I no longer have hope they will work. So tired.  

Thanks for listening and any shared experience.

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