Tara, I’m sorry to learn that efforts to save your J pouch have not been successful and that you are at a decision point about its removal. My situation was a bit different, but still resulted in the need to have the pouch removed. In my case, I strongly did not want an ileostomy and the need to have a permanent bag. I opted to get a BCIR, which is similar to a K pouch and functions the same way. These procedures do not require an external bag and there is a lot of information about them on the internet. I do not mean to “sell” you on these procedures, but just to say that they are available options.
Removal of a J pouch can be challenging, so you should get a surgeon who has done a number of them. In my case, removal of the J pouch (which had been in place for 30 years) and creation of a BCIR was done in one operation and I was discharged home with no complications after 21 days in the hospital. Within three months, I was able to do most of the activities I enjoy and have a very good quality of life. While some people have trouble sitting after their bottom is sewn shut, I did not. The first few days after surgery were the worst for pain; the pain meds provided took the edge off of it. Please feel free to send me a PM if you have any questions, and I wish you the best.
Bill