Losing hope - any ideas?

I’m sorry you’re going through this. Do you believe your sphincter was damaged during surgery? Some surgical approaches stretch things pretty aggressively. If a surgeon did that to me I’d be looking elsewhere to fix it.

So sorry you are having such a difficult time. It is very hard to make decisions when you are suffering with the kind of symptoms you have - especially the loss of control.  You mention fistula - is this what caused you to undergo the pouch re-construction or were there other problems? It sounds as though the issue you're experiencing now is a new one?  

With more surgery being suggested  - the  proposal sounds quite extreme - Scott's suggestion for a second surgical opinion is a good one.  There may be other approaches.

it occurs to me that if you're facing a  situation that ultimately precludes a functioning J-Pouch because of the sphincter, K-Pouch might work for you.  So I'd find a highly skilled surgeon with expertise in K-Pouch as well as repairing a J-Pouch for another opinion.  

Please update us!

I am very very sorry to hear that your pouch redo has had a poor outcome.

Like others have stated, second/alternative opinions are a must in this situation.

you are likely faced with serious mechanical issues that an expert needs to fix.

i would be looking at Dr Remzi at NYU in Manhattan, NY.   He is the known expert in these matters.

I wish you the best and seeing you healthy and whole in the coming months.

If you live in the US, another possibility for a second opinion is Stefan Holubar, at the Cleveland Clinic last time I checked.

Sorry to hear about your situation. I've had improvements with seeing a pelvic floor physiotherapist. I hope you find some help soon.

Thank you everyone I have started pelvic floor therapy (2 sessions so far) and will look into a second opinion with Dr Holubar.