My 73 year old husband had a total colectomy with J-pouch placement 11 years ago and it has decreased his quality of life gradually but steadily since then. At this time he is incontinent nearly all the time. He wants to be evaluated for options to improve his condition, whether that would be permanent end ileostomy, pouch revision, or any other procedures or treatment modes. He is interested in going to Mayo Clinic for evaluation, but would like recommendations from some people with similar problems on what doctors could help him. He is nearly always very depressed. Any advice is very welcome.
Six years ago, I went to Mayo Clinic for a second opinion after I had a malignant polyp and recurrent high grade dysplasia in my anal canal. An ileostomy was recommended by my GI and also the surgeon at Mayo. I asked about getting a K pouch (had already researched this option) since I strongly did not want an ileostomy with its associated issues. I later learned that Mayo only does J pouches. I opted to get a BCIR (modification of a K pouch) and it has produced excellent results for me. Please feel free to send me a PM with your contact information. There is more information I can provide in a phone conversation.
Thanks for your reply, Bill. I may PM some more info later depending on what my husband says. Right now I'm going to wait on doctor recommendations from you and other members. The goal is to have a doc evaluate him and come up with a plan of action (surgical or not) which could improve his condition.
RHF, you’re talking about surgery, but I can’t tell from your post what’s already been considered or tried medically. There are plenty of treatable things that can happen with a J-pouch. Surgery is generally reserved for things that can’t be treated medically.
Scott: He realizes this is true, but his depression is at a point where he needs an experienced doc to lay out all options for him so he can make a decision that won't be subject to long periods of trial and error. The errors have been too numerous during the last 11 years. He's at wit's end, even with antidepressants, psychiatric help, etc.
I've known many people who decided to get permanent ostomies because of incontinence. I say go for it. Your husband could live 10-20 more years. Better to live it the way you want to rather than not being able to control leakage.
RHF, it seems you are asking for recommendations for doctors at the Mayo Clinic. I think many people in this community have experience with the Clinic and hopefully they will be able to reference a few. Good luck to both you and your husband.
Thank you. There's nothing as good as recommendations from people with first-hand experience. People who don't have this condition (myself included) can't really add anything but emotional support and empathy.
I had my j-pouch constructed at Mayo in Rochester. I had Dr. Cima. He is the head of the gastro surgical team there. Although, I am having issues, he is a great doctor and very knowledgeable.
Dr. Kelly Mathis is my surgeon at the Rochester, MN Mayo Clinic and my GI is Dr. Edward Loftus, Jr. My j-pouch surgeries were performed by a local surgeon and I was referred to Mayo by my local GI who said I needed IBD and j-pouch specialists. I went there for 3 or 4 years before I needed the surgery to quit using my j-pouch and eventually it's removal. These doctors are wonderful and always take the time I need to understand what was going on.