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!
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I'm so sorry you've been given that news. The top expert in pouch reconstruction seems to be Dr. Fera Remzi, formerly at Cleveland Clinic and now at NYU. If I were in your situation I'd try to consult with him.
Has anyone offered an explanation for why the pouch is in this state?
Hi Scott- no explanation. The new doc said that the pouch is shot. It's a thick fibrous deformed ball of tissue. How it got this way we don't know. We assume it is because it is 20 yrs old?
A pouch will generally be perfectly healthy when it's 20 years old. I suppose chronic pouchitis left untreated (or at least not treated successfully) might do this, or perhaps a poor blood supply to the pouch.
If that tight opening can't be dilated a temporary loop ileostomy could buy you as much time as you need to make a permanent choice. If that old pouch is to be removed, that's best done by a surgeon who's very experienced at pouch removal.
As you consider options you might find a K-pouch (or BCIR) preferable to an external appliance.
I am so sorry your husband is dealing with this nightmare.
A diagnosis conversion to Crohn's could be at the root of all his misery. Nobody has to do anything wrong or be negligent in not knowing in advance this was Crohn's all along. IBD is notorious for being very difficult to sort out and it can take years or decades to fully manifest.
If you want to travel to New York (Dr. Remzi), Cleveland Clinic or Mayo Clinic (which both have specialists in IBD surgery), you might get reassurance that the current diagnosis is correct. If it were me, however, two failed pouches would be enough to convince me to opt for an end ileostomy. Life is too short. A Crohn's diagnosis pretty much precludes a continenct ileostomy, particularly with the loss of two other ileal pouches. A more local second opinion might be nice, but I don't know what is available for you.
Good luck to you both and I hope you get some answers.
Jan 
I pretty much agree with Jan. I brought up pouch options because you described your husband as "devastated." Trying again with the very best surgeon isn't crazy, but the history suggests a higher risk of failure.
Hello.
I am so sorry he has gone through all this. And if he is reading this I gave up with 1/10 the problems and time. Time was the problem with me. I will be two years out from removal in October this year and I'm still recovering from the damn thing. I couldn't keep it because it was slowly killing me. Of course I didn't realize it until 26 months of having it. My surgeon wouldn't do another pouch. She didn't think I would survive. I look back and I know I wouldn't have. Like I said. I'm still recovering and truly don't think I will ever be 100 percent of what I was before. I have an ileo now. That's not a problem. I should have went straight to it in retrospect. But you know what they say about hindsight.
You both will know when to give it up. Your not giving up. Your moving on. Life is short. And for some of us. Fragile. And the body can only take so much.
My best wishes to your husband. This is a tough situation. And a miserable way to live. Omgoodness it's miserable. But there is a life after a pouch. I'm proof of it. I. At times cannot believe I made it through all that. And the problems that brought me to it. Just a miserable way to live.
I cannot give any advice on what to do. I am by no means experienced in the medical field. Just went through a bad experience and came out ok on the other side.
Again. Good luck. You will make the right decision. And it will be ok.
Richard.