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J-Pouch....anyone have one?

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Crohn's Disease
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Posted 10/7/2009 9:25 PM (GMT 0)
Does anyone in here happen to have a J-pouch? I had my colonoscopy and it's still active Crohn's in the colon . My. GI has me doing Rowasa and I have a Remicade infusion tomorrow but if that doesn't get rid of it by my next scope sometime in November my GI says he expects the surgeon will take the colon out and give me a J-Pouch. I've read on it a bit and it seems much preferable to having a bag full-time and what not. Does anyone here have one and have any tips..or warnings or just anything about it? I'm just hoping that whatever gets down I can get cleared back to work and my normal life from before all this getting cut up started . :) Thanks for any answers .
Posted 10/7/2009 9:55 PM (GMT 0)
I was actually wondering the same thing! My partner has a J-pouch. He had the surgery in 05?? Something like that. He always has active Crohn's in the colon, and also near the pouch. He also gets pouchitis quite a bit. He has been on everything you can think of, including Remicade for the last year, the Remicade has helped his pain, inflammation, etc...it hasn't done anything to put him into remission. I actually don't think he's ever been in remission since being diagnosed. The J-Pouch did improve his quality of life extremely, it was his last option other than to get a full time bag. He does tend to get frustrated because not all doctors agree with how much effect the pouch has on Crohns, and the lack of information in his unique case.

I think if he had to do it all over again he defiantly would. I don't know if I've helped or confused you! Have you checked out the website j-pouch.com? There is a writer on there named Liz that has Crohn's and a pouch...interesting reading!

Hope you get the answers you need, and feel good about your decision! (well, as good as you can!)
Posted 10/8/2009 1:02 AM (GMT 0)
Nah that was pretty helpful thanks. Any information is more then the none I already had. :) It's cool to hear that it helped.
Posted 10/8/2009 1:06 AM (GMT 0)
Why don't you post this on the ulcerative colitis forum...more of them have j pouches.
Posted 10/8/2009 3:00 AM (GMT 0)
From everything I've ever heard, a j-pouch works much better for UCers since UC is limited to the colon/rectom and with UC the entire GI tract can be involved, with a CDer getting a j-pouch increases the chances of having more complications and disease activity can still affect the j-pouch since it's made up of the small intestines which CD commonly affects.

Do lots of research, I'm sure your doc will inform you of the risks and the probable low success rate of j-pouch and even k-pouch surgeries for CDers in particular.

:)
Posted 10/8/2009 3:14 AM (GMT 0)
I agree a J-Pouch works best for UC my surgeon wouldnt entertain the idea of me having J-Pouch surgery with Crohns/ Colitis as I had active disease in my rectum so I had that removed 3 months ago and now have a permanent ileostomy. Post on the ostomy board as well firemedic they are a great help there too and a lot of them have been through the J-Pouch surgery.A friend of mine is having a J-Pouch surgery this friday but his diagnosis was UC. I will let you know how he goes. Take care and hope it all works out for you
Posted 10/8/2009 3:34 AM (GMT 0)
Thanks. Yeah I was under the impression that people with crohn's didn't really get the J-Pouch very often if ever but my GI thinks that's what the surgeon would want to do. I'm gonna talk more about it with them and see what the deal is . I posted in the ostomy forum and have gotten a few answers there too. Thanks everyone.
Posted 10/9/2009 1:56 PM (GMT 0)

I have had a J-pouch for 12 years. I was originally diagnosed with ulcerative colitis which confines itself ONLY to the colin. So, the fix for UC is complete removal of the colin and a J shaped internal pouch is made out of the end of the small bowel; then hooked up to the back door. Chron's, on the other hand can appear ANYWHERE in the digestive tract so a J-pouch would do no good. As a matter of fact it makes things worse by causing adhesions and exciting the rest of the gut into inflaming, which is what I'm facing now.

However, my diagnoses changed from UC to Chron's in 2005. This happens on more than one occassion and I already had the J-pouch. To make matters worse, I had to have surgery again to recover a lodged capsule endoscopy. I had to look really hard to find a surgeon that would even do it without leaving me with an ostomy since the survival rate for Chronies with J- pouches is only like 30%.

Today, I am still facing the possibly of removing the J-pouch.

I wish I still had a colin!

Dave D

Posted 10/15/2009 6:20 AM (GMT 0)
Wow man...thanks for the info. Especially the survival rate part...darn.
Posted 10/15/2009 1:43 PM (GMT 0)
When I said survival rate, I meant for the J-pouch, not the Chronie (person)

Hope that is how you interpreted it.

Dave D

Posted 10/18/2009 4:30 PM (GMT 0)
I've had a jpouch for 17 years (1992)....I too was originally diagnosed with UC and the biopsy confirmed this after the jpouch procedure....now 17 years later, I've been diagnosed with crohn's....I've had a good quality of life up until this past year..while I had chronic pouchitis since 1996...it was always treatable and nothing compared to my life with UC...they say I have crohn's b/c I now have a stricture above the pouch...there is a lot of debate as to whether the pouchitis is crohn's or actually pouchitis...and ofcourse, whether I actually had crohn's all along or was I one of the lucky ones who developed both...something my doc says can happen...either way it doesn't matter b/c whether its pouchitis or crohn's, the treatment would have been the same...I have worked my way up the medication line and now I'm on humira which has helped a great deal...I have to say, I don't regret having the jpouch surgery....when I had it done it was still quite new but my best option...I became acutely ill very quickly and lost my colon 1  1/2 years after being diagnosed with UC....now that I have the diagnosis of Crohn's, I do fear losing the jpouch and receiving a permanent colostomy bag...but I have to disagree with Dave about the survival rate of a jpouch with someone with crohn's...I recently saw my surgeon about this and he told me that the survival rate of the jpouch is now up to 50%...my surgeon told me that b/c of the biologics, jpouchers with crohn's are keeping their pouches longer...the last thing a surgeon wants to do to a crohn's patient is cut their bowel, especially if they already have a jpouch as we have less to work with....so, while the survival rate of the pouch has only gone up 20%, it still gives me hope...that being said, while I would recommend the jpouch to a person with UC, I would not recommend it to a person with crohn's...as Dave noted, the disease effects the entire digestive tract, to remove the large intestine is not going to cure that disease and could possibly cause more complications...this is why most surgeons will not do the jpouch surgery on cofirmed crohns patients....
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