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Question for those with a J-Pouch (Back To Ostomy?)

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Posted 6/17/2013 8:00 AM (GMT 0)
It's been a while since I've been on HealingWell, I hope everyone is doing well or soon to be well. Before I ask my question I want to apologize if this is a tad off topic (don't know where else to post it).

I have a question I hope someone who has/had a J-Pouch can answer. I had UC and after a while it was time to fix things in hope of a better life. After my 3rd surgery (Dec. 7 2010) I was told to give it at least a year for things to set in and everything should be better. I won't lie things do seem better but I feel I'm left with a disadvantage.

I constantly have leakages from doing the simplest tasks. (i.e. walking down the driveway to get the newspaper) and this causes rashes daily, even if I clean it up asap. I've tried dieting so I don't use the restroom as often (managed to get it down from 12-16 times a day to 8-12 but it still drives me nuts.

I was wondering if anyone has experienced the same and if they found a good solution to leakages. I've talked to my doctor and he said there wasn't anything I could do besides exercise and try new diets. I'm getting to the point where I'm considering going back to having an ostomy, at least then I could leave the house without worrying as much and actually get a job, but at the same time I don't want to let my parents down because this didn't work out as they hoped it would. I'm just seeking any possible solutions before I have a major talk with my parents.
Posted 6/17/2013 1:13 PM (GMT 0)
If you have leakage during waking hours, chances are there is some damage to your sphincter and it might be permanent. Before tossing in the towel I would look for a rectal physical therapist. They are hard to find but they are the best at assessing what part of your sphincter is damaged and will work to improve it. I went to one in my early jpouch days and had great success.

Sue
Posted 6/17/2013 1:28 PM (GMT 0)
It may not be damage. The sphincter may not have relearned to coordinate itself. It's out of service for three months before take-down and for some people it's fine but for others, the muscle becomes weak and uncoordinated. The pelvic floor therapists can help. You might want to try looking through the hospital, or through a gynecologist.
Posted 6/18/2013 4:21 PM (GMT 0)
Seems our situations are/were somewhat similar. I had J pouch take town surgery in Oct of 2010. 25 years of UC tunrned into rectal cancer. I was a marginal candidate for a J pouch. I had incontinence from day one after my take town. I did learn to live with it but it was a life centered around the J pouch. Many things I wanted to do I resisted or took extrdinary measures to do, life contracted. I did have some mild pouchititis which made the situation worse. I also had pretty bad regular butt burn which made leakage really difficult to deal with

Things that helped were tincture of opium, keeping a cotton ball pushed lightly into the anus, general thickening of the stool through diet.

After about 18 months I had the J pouch disconnected but left in place and an end ileo formed. This proved to be a bad idea as I had lots of secretions from the J pouch that I couldnt hold in. No butt burn but really annoying secretions to deal with plus the stoma due to tension on the blood vessels because the pouch was still in place was nearly flush and difficult to deal with. 6 months after disconnect I had the pouch excised and a stoma revision. J pouch excision is a tricky surgery, mine went really well. 4-5 hours, I left my anus in place and recovered quickly. I now can do anything I want and life has expanded I am quite pleased that I had the J pouch removed. I wished it had worked but it was not to be.
Posted 6/25/2013 2:34 AM (GMT 0)
I had a jpouch and got rid of it and now have a permanant ileostomy.

My suggestion would be to see if you can get to a facility like Cleveland Clinic ohio and meet with the real jpouch experts. I believe that many doctors do not have enough jpouch experience and knowledge to truly determine the cause of problems. There could be many many reasons you are having leaking problems:sphincter problems, pouchitis, mechanical problems with jpouch, bacterial overgrowth, pouch being built wrong, so many many things. most doctors don't understand all of this. You really need to get to the jpouch gurus and get analyzed. Then you will be able to make a good decision.

also the jpouch removal surgery is not something to take lightly. It is an extremely complicated surgery, more so than any of the colon removal or jpouch surgeries. You would definitely only want it done by a top surgeon who has performed many such operations.

With that said.. my quality of life returned after I got my jpouch excised.

Also you might want to go over to www.jpouch.org
there are many people on there with similar situations to yours.
good luck. let us know if you have more questions.
Posted 6/26/2013 11:02 PM (GMT 0)
Sorry to hear you are having problems..

I can only offer that yes, I have had leakage..HOWEVER, I never had colostomy.. my only surgery was my j-pouch. So, I guess for me it is a little different.

It is funny that I read this today of all days, as I started leaking last night...after being leak free for almost a year..but I think that has to do with the stomach flu I think I now have..

Just go with food that you know will help bind you up a bit, and try to cut back on it over time.
Good luck
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