Anyone being treated in NYC? Do you have a J-Pouch?

Hi, everyone. I’m very new to all of this and so confused. I’m the mom, not the patient. My son has a very complicated history to say the least. Short history, diagnosed with UC at age 6, yearly flares, various mess. About age 18 refused to take meds. Also has Aspergers. Fast forward to 2014. Total colonectomy, with j-pouch formation. In Sept. They connected him to the j-pouch. Complications began around October/November. Developed a large fungal abscess and fistulia. Drain put in back for abscess, two weeks later put on TPN. Oh they found a small fistulia. TPN not suggessful, in March reversed the take down and back on ostomy. In May, develops jaundice. Has sonogram, MRI, and ERCP. My hospital/medical school in NJ is no longer able to handle him complications. We found a transplant team at Weil-Cornell. Yesterday met a new surgeon, Dr. Shukla, and new gastrointestinal, Dr. Bosworth.

Does anyone have any experience with either of these doctors. How good of a surgeon is Dr. Shukla? Dr. Shukla is not sure if he can save Jeff’s j-pouch because of the fistula which, we think, is not along a seam line but in the back of the pouch in the tissue. It’s a micro tear. Unusual not to be on the seam line. But no one knows for sure.

They have ordered an MRI and a pouchoscopy so far. Don’t know what will come next. Any insight is appreciated, good or bad. I’m finally figuring out to just deal with today and not worry about tomorrow.

Thank you!
Dianne

Dianne, dealing with a balky jpouch is hard enough, but throw in psc, you and Jeff are juggling multiple "stuff".

I am thankful my jpouch has not had any major issues.

Jpouch.org might be a better place to post your jpouch questions; I've seen you on there too-great resource.

Hopefully these new docs have a lot of tricks up their sleeve that will help.

Jeff