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Info I got about J-Pouch

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Ulcerative Colitis
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Posted 11/21/2012 6:43 PM (GMT 0)
I was at the Wooster Cleveland Clinic last week and I was talking to the nurses about J-pouch vs a regular bag since I'm now over all this pain and bull crap.  They said that the main branch of the Cleveland Clinic now has a whole department designated to J-pouches since so many people are having problems and they are now finding that some people are getting cancer in their J-pouch.  Both nurses said if it was them that they would just go for the regular bag.  I just thought I'd pass on the info. for those who are trying to make up their mind.
Posted 11/21/2012 8:21 PM (GMT 0)
There has always been a cancer risk with jpouchers, since there is a bit of rectal cuff left for continence. The last time I checked the percentages were less than 1% for the chance of cancer post surgery. I think you misunderstood the nurse; they don't have a ward in the hospital for people with jpouch problems, they have a ward for people who choose to have jpouch surgery. Yes, there can be complications post jpouch surgery, there are complications post any surgery. Jpouch surgery is very complex and depending upon how ill the patient is, the risk of complication is higher.

There is no perfect surgery for UC but there is a perfect surgery for you, and that's the one you're willing to live with. Jpouch surgery has a satisfaction rate of over 90%. I've been one of those happy jpouchers for almost 12 years.

Sue
Posted 11/21/2012 9:53 PM (GMT 0)
Happy j poucher here too. I certainly wouldnt let a cancer scare of the j pouch dominate my decsion to get one. You can get cancer of any part of your body. That's a huge "what if". I still say the people who are having on going problems with their j pouch had a misdiagnoses of chrons. I know many people with j pouches with no issues. So.....it's just a personal decsion. I love my jpouch but if it fails me tomorrow I have no regrets and can live happily with an ostomy. Anything is better than the UC hell I was in.

I edited this because I forgot to add that 2 of my family members have j pouches. No problems. It's important for people to know that the majority of these procedures go off without a hitch.
Posted 11/21/2012 10:48 PM (GMT 0)
Haven't you asked this same question in now the 3rd place? There is no special clinic/wing or whatever for "failed or problem pouches" and no nurses told you that BS. They have world renowned doctors, GI's and surgeons, and it is obvious you didn't have an appointment and/or discussion with anyone of them.

IMO you are giving bad advice and misusing this forum.
Posted 11/22/2012 3:26 AM (GMT 0)
I had my step 1 at Cleveland Clinic main at the end of August. The surgeon went over other potential problems (fertility, incontinence, pouch failure). He basically even said that at some point I would likely battle pouchitis...you take drugs and most of the time it goesnaway. They weren't hiding anything. I wasn't pressured to stay with an Ostomy. Are there special considerations in you case? I've also been treated by all but two of the main campus's ostomy nurses. One of whom had a failed jpouch. None of them ever discouraged me.

People with "problematic pouches" are at CC because they have problematic pouches. Most of the time they have had their surgeries elsewhere. 90% of people who had their jpouch done at CC main are HAPPY with their jpouch.
Posted 11/22/2012 6:07 AM (GMT 0)
ActiveUCer,
You said it better, thanks.
I'm glad your surgery is over and that you have an end ostomy as I hear they are better than temp/loop ones. I was in such a rush I had all my J-Pouch surgeries in 2 months. Sometimes I wish I'd kept my ostomy longer, to give my body time to heal more, but I'm not a patient person and hated my stoma.
Take your time. I hope you are feeling well.
Posted 11/23/2012 12:15 AM (GMT 0)
     I don't have a j-pouch, I have a permanent ileo, but, I would think your chances of developing cancer of the colon after years of suffering with UC would be greater than developing cancer in the j-pouch.  Just my humble opinion.
Posted 11/24/2012 7:06 PM (GMT 0)
I did have a appointment at Cleveland Clinic and I have been going there since 2005. I was in a clinical trial for Adacolumn with Dr Lashner in 2005. I saw Dr. Shen, Dr. Sue, Dr. Thoata and Dr. Murphy all trying different drugs and crap to help me.

So Toughenough I didn't appreciate your post. I have been using this forum to hep me for several years and I appreciate everyones advice and would never dream of telling something that wasn't true. The cancer in the J-pouch was something recently found and the nurses was at Dr. Murphy's office who gave me this advice so I'm very sorry if I upset you or caused you to worry about anything but it is absolutely what I was told.

This info helped me make my decision to go with the bag since I wanted the least risk for needing drugs in the future or further surgeries, so I just thought to pass it on to anyone interested.
Posted 11/24/2012 7:57 PM (GMT 0)
I wish you well with your surgery and your ostomy. I am sorry I accused you of being a troll. You sounded a lot like one that is in another support group I'm in.

I still think you got bad advice about cancer in j-pouches. You are going to the right place so that's why I why I found it hard to believe you received the advice there.

Again good luck with your surgery, you will be feeling better soon.
Posted 11/25/2012 3:03 AM (GMT 0)
I actually heard about the cancer in jpouches as well a couple of weeks ago. I CANNOT remember the source though and I don't know the data (occurrence rates). I tried going back several weeks on jpouch.org to find the source but didn't see a thread titled anything appropriate. It could have been buried in one of the comments.

For my particular activities, jpouch is still the way to go for me.
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