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.