Hello everybody! It's been many years since we have posted in this forum. Long story short- we are from Montana and my husband had initial surgeries here. Many complications including a fistula (that eroded part of his tailbone!), and an unskilled surgeon resulted in a complete J-pouch redo surgery in Salt Lake City. More small intestine had to be used for the new j-pouch. Fast forward 20 years and he is losing weight rapidly, not sleeping, on the toilet all the time and generally miserable. He went to a new doc today who performed a flex-syd and said "the pouch is shot. It's a hard deformed lump of fibrous tissue." And the connection to the small intestine is so tiny he couldn't even get his scope in there. He recommended an ileostomy. My husband is devastated. Please HELP! Do we need to get a second opinion? We are willing to travel but where do we go? The surgeon in SLC is no longer there. And he was pretty old at the time he had performed the redo! Have ileostomies improved in the last 20 years? Any advice is appreciated!
I would definitely go for a second opinion to determine (1) if anything can be done to save the present pouch, and (2) if there is sufficient intestine to make a third j pouch or a continent ileostomy. When medical issues made removal of my J pouch necessary, the surgeon who did my second opinion at Mayo Clinic would only recommend an ileostomy, which I strongly did not want for its quality of life issues. There are two alternatives to the end ileostomy that do not require having an external bag: the K pouch and the closely related BCIR. Both of those options have been available for many years and have a high success rate as well as high patient satisfaction. There is a lot of information available on the internet. Unfortunately, these procedures are not that well known and doctors too frequently do not even mention or recommend them.
I opted for the BCIR with surgery performed by D. Ernest Rhenke in St. Petersburg, FL. This surgery is also performed by Dr. Don Schiller in Los Angeles. Both of them are very highly qualified and have been doing this procedure for many years. There also are a number of surgeons who do K pouches, including those at the highly rated Cleveland Clinic. I have had a BCIR for 4 years with very good results and am so thankful that I opted for this procedure. Please feel free to send me a PM with any questions that you have.
Thank you Bill. We will definitely look into this. We are leaning toward Cleveland Clinic.