Failed J-Pouch

Greeniris, unfortunately, many surgeons are not aware of the K pouch or closely related BCIR, or for some reason are reluctant to recommend these procedures to patients with failed J pouches. Both of these procedures are alternatives to an ileostomy and do not require the bag. I am not familiar with Dr. Worsey, but I do know that Dr. Donald Schiller in Los Angeles does the BCIR procedure. A very highly respected surgeon also in Los Angeles is Dr. Robert Beart, who did my original J pouch surgery at Mayo Clinic in 1983 and is a good contact regarding your husband’s situation, but he might be retired by now (but could give references for other surgeons). Did your husband’s surgeon create an end ileostomy and remove his anus at this time?

My GI discovered high grade dysplasia in my anal canal and said the J pouch had to go. His diagnosis was confirmed by a well respected CR surgeon at Mayo Clinic, but he would only give me an ileostomy. I had done significant research on alternative procedures and did not want to get stuck with the bag and its associated issues. I decided to have Dr. Ernest Rehnke in Florida give me a BCIR, and everything worked out well for me. The BCIR and K pouch are commonly done for people with failed J pouches and problematic end ileostomies and have a high success rate. Please send me a PM if you have any questions or want to talk.
Bill

Bill, thanks so much for the reply. I feel better about it knowing that the K-Pouch just isn't that well known. I was just worried that the surgeon did know about it but for some reason it just wasn't an option for my husband.

I believe the surgeon left the anus, but removed the rectum. I will have to find out for sure.

Thanks also for all the surgeon names and info.

I've been looking at BCIR & K-Pouch, but can't really figure out what the difference is. Is there much difference at all?

My husband will be glad to be rid of the bag. He had a stroke a couple years ago and still has problems with his right hand, so it is hard for him to empty the bag and take care of the ileostomy. Plus he gets raw skin from the wafers. I'm hoping the K-Pouch might be easier for him.

Hi
in 2006 Dr Worsey and Dr Launer at Scripps La Jolla, CA performed a kock pouch for my jpouch that stopped working after 15 years. My anal canal stretched out too much and the pouch was doubling over on itself. With your husband not enough stump I had too much. Dr Launer passed away in 2010. Dr Worsy will help your husband as long as he does not have Crohns disease and mayabe he would even help him with that. He is very busy but call and get an appt. I did not like the bag either and I looked for a year before finding out about the kock pouch. Much better but still a lot of work. I just was at Scripps La Jolla for a dilation and removal of scar tissue at the anastomosis of the pouch and the small bowel. My Kock pouch has been a bit troublesome every 3 years I have to have scar tissue taken out. But I will do anything to save it. Email me if you like jandjscott@sbcglobal.net I am also an RN. I live up here outside Sacramento, CA and fly to MD appts. It is such a drag but what can you do. Take care Jeanne

Thanks so much! My husband has had tons of complications from this last surgery. After his pain being ignored for far too long, we ditched the hospital that did the surgery and took him to Scrpps ER. Dr. Worsey has taken over his care and he just got home today after 6 days. Dr. Worsey and his associate Dr Beiermeister have both been amazing. We can't believe the difference in care. They said once he heals up from this one, they will be happy to see about doing the K Pouch.

Great so happy to hear that. Let us know how it goes when he has the surgery. He will have a leg bag when he goes home but that will come off several weeks later after the pouch heels and stretches. The Enterostomal care nurses that will work with him are awesome. They wake you up the first day and start training. Yahoo so glad for him and you

Dr Worsey is amazing. he was trained by Dr LAUNER, who was trained by my original surgeon, Dr Gerber (trained by Dr Koch), and all trained at the Cleveland Clinic.

Dr Worsey will be very honest and not commit to a KP if he can save the Jpouch. If he cannot save the JP, be sure to have your hubby ask Dr Worsey for another patient (preferably a guy, and I can hook him up with two directly) to ask specific questions and understand what his day to day with be like.

Best to him and you! Janice

Thanks! So far we have been very pleased with Dr. Worsey and Dr. Beiermeister. Dr. Beiermeister has taken over my husband's care and has been great. My husband kept getting abscesses from the last surgery and he is still fighting that and still has a drain. Dr. B wants to wait a year before attempting another surgery. I am very curious how it will go. The 2 surgeries that my husband had with his old surgeon were both nightmares, but we are beginning to think it was the surgeon just being inexperienced.

Can a J-Pouch be done if the rectum has been removed?

I don't think so..depends on spincter muscles and much more for a JP. But, yes to a KP.

I'd just let Dr Beiermester take over his care as planned and answer any questions.

I had to wait at least 6 mos after my ileostomy to have it converted to a KP. And, my surgery went very smooth.

He needs his health back right now!

I am joining your conversation since me too I am facing a Jpouch failure and I have some interogations about K-pouch. One of them concern the old pouch. Does the surgeon, has to remove it and close the anus or does he leave it in place but disconnected? If the old J-pouch is not removed, should I expecte some problems such as leakages by the anus, pouchitis, etc. Furthermore, I would to know more on the level of risks related to the surgery for making a K-pouch. On the risk aspect, how does it compare with the surgery for a J pouch? (sexual disfonction for man, urinary problems, etc)?

I will be happy to hear someone on these points.

Thank you

Rich M