Hi, I have this type of fistula. I've had it since 2006. Dr. Shen has tried every year to use "bear claws" to close it at the tip of the j-pouch w/ no success. I don't have a lot of drainage from it - usually can put a tissue folded over it and just place a new one when needed (not very often).
My last pouchoscopy was this past Friday (May 4, 2019) and he is going to now try hyperbaric oxygen therapy. I don't know if I'll have any success with this or not, but I'm willing to give it a shot (if insurance will cover it - I hear it's quite expensive). I'm hoping it will be the one that finally works.
I do not want to lose the j-pouch or try to have it surgically repaired as Dr. Remzi says he cannot guarantee I won't end up with a permanent iliostomy, so I just try to live with it. Hopefully, this HBOT will work!
I would love to know if this gives you good results! My husband has a j-pouch (that's how I wound up in this group), but the one in our family with an enterocutaneous fistula is our daughter. We have tried so many things trying to avoid another surgery, but have yet to get it to close. We recently started oxidative IV therapy hoping it will do the trick. I'd love to try HBOT for her!
Best Wishes!! I truly hope you have success!