rectal cuff - to remove or not to remove ref. jpouch surgery?

I'm not entirely positive about the different options down there yet (remove rectal cuff, remove mucosa, what keeps you continent, etc.). I plan on asking my surgeon lots and lots of questions about that for my next surgery.

Concerned - yes and no. You have identified the risk but if the surgeon is experienced in dealing with it's removal, then it might be better to get rid of it then retain it. Otherwise your UC might reappear in that area (causing some of the same problems you are trying to get rid of) as well as maintaining your cancer risk.

hi, I just joined the site recently and have had my j-pouch for only about 6 months now. Still struggling with issues such as buttburn, high frequency (especially at night), etc. Overall, things seem to be improving, although very slowly. I had my surgery done by Dr. Robert Beart (brilliant man of a few words), who told me that he has only done 10 or 15 mucosectomies TOTAL out of 1000s of j-pouches he has made. suebear, you must be one of the lucky few! :) He said he reserves mucosectomies for patients with low-lying rectal cancers, and in just few cases if the disease is very active in the rectum. But the majority of the time, a mucosectomy is NOT needed. He said studies have shown overtime that performance is better with a stapled j-pouch without mucosectomy (the pouch would have to be hand-sewn if a mucosectomy was done). The chance of recurring/chronic cuffitis is low, about 5%. Even if a patient has a mucosectomy, the UC cells around the cuff can grow back over time. If you still want/need a mucosectomy, be sure to have it done by a surgeon with a lot of experience, as it is a difficult procedure that has risk of incontinence if not done properly by a trained surgeon.

Just thought I'd share that. Best to everyone~

Well I guess I am one of Dr. Beart's 10-15! I know he didn't do mucosectomys on my friends that had jpouch surgery with him but I didn't realize he had done so few. Yep, I had significant rectal disease.

Sue

Thanks- oh, and bootstrap, just want to add that your blog is fantastic... It has put me in a better frame of mind (in spite of my terror at the thiught, still) for what I feel is now about an 80% probability of starting the surgery road in the next few months for me; like you I am very athletic, so its always a pleasure to readnof success stories- may your process keep moving smoothly and see you kver on that side soon, I think.

Both surgeons at the CC said they would strip the rectal cuff (both are very experienced surgeons). I am glad they did because they told me if you don't do it you can risk having the disease in the cuff. I was told that due to childbirth I was at a higher risk for incontinence, but they didn't want to risk the disease coming back. I have had NO problems with incontinence, from day one! Okay, once during the first week I thought I just had to fart, but it was more than that (didn't make that mistake again, lol). I never even had nighttime incontinence like many others have. She was an awesome surgeon...that's why it's so important to get a great one. I'm not sure at the Cleveland Clinic if they ever skip stripping the rectal cuff. I would ask around more because I would question how great a surgeon is if they can't do this procedure properly.

Yeah, when I asked her at the consult if she would strip my rectal cuff, she looked at me like I was crazy and told me the entire rectum would be removed, which I assumed included whatever "cuff" you guys have been talking about. I didn't know enough about the issue to question her further. However, I just now did a little research and feel I understand the idea a little better now.

And here is a link to a study that was done on how the amount of rectal cuff left in-tact affects continence:
http://www.ncbi.nlm.nih.gov/pubmed/1311872

Basically people with 8cm left did not lose any "squeeze pressure" or continence. People with 2cm left lost significant ability to squeeze, and only 25% of that group were continent after a year.

This is very informative, and I wish I would have known about this before I had my surgery. I'm hoping that when she said that my entire rectum would be removed, she was not talking about the cuff. When I go in, I am going to show her this info and ask her how much of my cuff was left in tact, if any, and whether or not it was stripped. If she removed my entire cuff and I am left incontient, then that would just be insane and I can't even tell you how I would react, but since she's considered one of the best, I can't imagine that she would be making a practice of leaving people incontinent. So I'm assuming maybe we just had a little miscommunication at our consult.

I will let you know what she says if I remember to post about it afterwords. My follow-up with her is not until November 9th.

My mucosa was also stripped at CC and I have never had incontinence issues at all.

Yes, Dr. Varma is chief of colorectal surgery at UCSF in San Francisco and does 2-3 J-pouches a week, ranked on one website as one of the top 1% in the nation, so she definitely knows what she's doing... which is why I trusted her on this issue in the first place without doing more research and looking further into it. I'm sure there was just a misunderstanding at the consult; I'll find out more details on what exactly was done to me when I go in for the follow-up.