J-pouch pros and cons

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supernova
Regular Member


Date Joined Jul 2006
Total Posts : 69
   Posted 2/10/2011 2:52 PM (GMT -6)   
Well, I am still considering whether I want to go for the J-pouch or not. Can those of you who have experienced the j-pouch give me the pros and cons of having one. I am not sure if I want to just opt for the permanent ileostomy and save myself from let down or give it a try. Any info. that you can give me would be very helpful to me. I know my doctor can give me pros and cons, but I want to hear it from someone who has actually gone through it. Thanks a Bunch! :)
UC- 13 years

gmark
Regular Member


Date Joined Jan 2011
Total Posts : 55
   Posted 2/10/2011 5:52 PM (GMT -6)   
It is hard for someone like me to know what to say about the matter. My pouch is a failure, so I have my bias against them, and wish I had never even heard of a j pouch. Those who get along great with one will tell you it is wondeful. If you opt for a pouch, you just have to hope you are not one of the unfortunate ones for whom it doesn't work. You had to get extra surgery just to get the pouch, and then end up with more surgery to remove the thing, and loose some intestine in the process. My personal opinion now on the matter is that if you have been fighting U.C. for alot of years, go for ileostomy to get healed all back up, and see how you get along with the ileostomy. If after a period of time, you find the ileostomy is just not what you want, then go for the j pouch.

As for pros and cons, there again it depends how successful the surgery was. I went from emptying the ileostomy bag 6 or 8 times a day, to running to the bathroom 10 to 25 times a day. The last time I had a good nights sleep was 20 years ago when I had my ileostomy, I kid you not. And bouts of pouchitis are even more miserable for me than my U.C. was. And butt burn! Oh my! My surgeon remarked how much money I would save not buying ileostomy appliances. Well, I have spent enough on j pouch sickness to pay for appliances for about a thousand years. LOL (my surgeon also told me I would have no gas, since I would have no colon. Thats the biggest lie I have ever heard. I've got enough gas to light up a city)

Wishing you the best. I know it is a tough decision.

supernova
Regular Member


Date Joined Jul 2006
Total Posts : 69
   Posted 2/10/2011 6:13 PM (GMT -6)   
gmark- I am so sorry that it didn't work out for you. No one should have to go through what you have gone through. Your story is exactly the reason I am afraid of going for the pouch. I was actually thinking about seeing how I do with the ostomy then deciding whether to go through with the j pouch. Did your doctor diagnos you with Crohn's later.. that's a lot of bathroom trips. I am worried about the cost of the ostomy supplies too. I don't understand, how would you lose more bowel if you go back to the ostomy?
I hope you begin to regain your health!

gmark
Regular Member


Date Joined Jan 2011
Total Posts : 55
   Posted 2/10/2011 9:05 PM (GMT -6)   
Sorry for the double post on this subject, on the U.C. forum,  I thought it had disappeared, and didn't realize it was on this forum instead.  So I edited most of it out
 
Anyway, they never have diagnosed me with Chrohns, so hopefully it stays that way.  As far as losing more bowel, you just lose the amount of small intestine used to make up the pouch, and hopefully no more than that.  I'm not sure exactly how much is actually used to make a pouch.  I do remember one time when a new doctor was doing scope on me in his office remarking to his nurse that "this pouch is huge!"  I have to wonder if the original surgeon used too much intestine to make my pouch, leading to clean out problems, and pouchitis. 
 
I really do think it is a good idea to go just for an ileostomy first, get back to great health first, see how the ileostomy goes, and then later on think about a j pouch if you are not happy with the ileo.  I went in to my first surgery practically on deaths door.  Looking back, I would have thought the surgeon would have told me I was not a good candidate for a j pouch, because of such poor health.  I also remember after my first surgery, and having a loop ileostomy thinking that this is the best I have felt in years, I don't care to have the takedown.  But then the loop pulled inside, and I had to have emergency surgery for that, and they just went ahead and connected me up. And it was all downhill from there.  Wishing you the best.

Post Edited (gmark) : 2/10/2011 8:17:25 PM (GMT-7)

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