I wish you weren't facing this, but you are in very good hands. If the antibiotics were making things okay you could stick with what you've got, but it sounds like that's not adequate. I guess I'd choose to let Dr. Remzi fix it. FWIW, it's a result to look forward to, even if the process isn't a happy prospect. 

I am so sorry...I know how frustrating this sort of thing can be.

I am just curious but can't they fix this through laparoscopy? If they can do whole pouches that way, from start to finish, can't they do a redo that way? (I am not expert in what can be done in the U.S.)

Also, you may wish to ask, if it is not too damaged, if they can't keep the original pouch and just fix the affixation?

Just some random thoughts.

Good luck

Sharon

Thanks for your response. According to the surgeon, when performing this surgery laparoscopically, its difficult to see the exact site of connection of the Jpouch. That can be the reason that there is a twist. Therefore, the best way to perform this surgery is through a regular incision so they can properly see the sight of connection. In addition, I guess that there is no way to simply un-twist and reconnect the pouch without redoing everything. 

I had my pouch taken apart , problem fixed, re centered and then hand sewn back in place. I don't know if Dr Milsom is taking on new patients but u might try a consult with him or one of his associates at Cornel. Good luck. 

Thanks for this reply. Was your pouch taken apart and re-sewn during one surgery, or was this done in several parts with a colostomy bag in place in the meantime?

No one surgery thru the anus, I still had the ileo at the time but I have spoken with others who used him for the same procedure and they did not have to have a ostomy. I guess it depends on many factors.