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Hi.

I am a 35 yo man from Norway. I have gotten a endileostomy after a very aggressive UC. Took about half a year from diagnosis to operation.

I work as a handyman, traveling around on smaller jobs, so i don`t always have quick access to a toilet, but its usually never a very long drive to a gas station or something. But I`m not planning on doing this for the rest of my life, some day i will probably get a office job.

I have been living with my stoma bag for about a year and a half now, and i`m for the most part very happy/lucky. I have very few problems. I mostly eat and drink whatever i want, and i have very few leaks and blockages. And i`m not a person that care that much about how i look, i`m tend to be more focused on things being practical and easy.

But i used to be happy with how i looked, and i`m not able to get my head to do that any more. And i get really frustrated when i get leaks (especially at night), i don`t like that it just does its own thing without my control, and i find it annoying when i have to shower and/or change bag when it is active. And it makes me kind of sad to think that i have to have that thing for the rest of my life.

But i have been checked out and they offered me the jpouch surgery (think they will call me in for the first one in January). I want to want the surgery, I want the bag gone, and i want to feel more normal and be happy with my self again. But i am scared that doing this will make my life more complicated and that  i will end up feeling like i have made a mistake. They say i`m a good candidate, and i most likely will have a good outcome, but its not a given.

Do anyone here have an idea if the fact that i have a well functioning bag have any say in if i have a good jpouch? Has anyone done a survey about bag vs jpouch results? I couldn`t find it when I searched at least.

I do know i will change the problems I have with new once. But as long as the day to day function is good, then i can live with a bad day/week every now and then. Any advice/thoughts would be helpful. I think I mostly need someone to bounce my thoughts with, and to hear that it isn`t idiotic to go through with this.





 

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This is a hard choice, and very personal. Overall satisfaction tends to be similar for people who choose a J-pouch and people with an end ileostomy. It seems likely that that’s because they *chose*. In your case one of the challenges is choosing between something you know (your end ileostomy) and the unknown (how your J-pouch would behave). It certainly isn’t idiotic to get a J-pouch - nothing in life is guaranteed to work out well, including things we take for granted, like driving to work. The odds are pretty good with a J-pouch, and it certainly removes the external bag and the associated issues. I’m very happy with my pouch, and it has let me do some unexpected things, like martial arts and scuba diving, that would have been difficult or impossible with an external bag. I am less likely to urgently need a bathroom than someone whose bag has filled up. My J-pouch isn’t perfect, and like most people who spend time on a support forum I can talk about things that have gone wrong with it. It’s much harder to hear from people whose J-pouches are completely (or nearly completely) trouble-free, since they tend to be everywhere but here.

Good luck!

I had the bag for 13months and the jpouch isnt normal again but the bag is worse.I still wrap myself in a towel at night because of those bag leaks.I haven't had any leaks or accidents with the jpouch since the two month recovery from takedown.my job involves alot of crouching and I couldn't do that without bag leaks ,even warm weather ,cutting the lawns and sweat made it leak.jpouch isn't normal again but bag is far worse having a bag permanently attached to your body ,worrying about leaks,unable to sleep and relying on medical supplies isn't good.

Last edited by Chook2

Hi Maasa,

I was absolutely terrified to try the JPouch, but I am super happy that I did.  The ostomy bag worked well for me, but I thought - let me try for the JPouch, and I could always go back to the bag if the JPouch fails  (although that is not simple to do).  For me, I just liked the freedom of not having to to wear an appliance.  If you do pull the trigger - go to someone that does a lot of pouches.  A center of excellence that specializes in Jpouch.

It really is a crap shoot... lol. You are young enough that it is probably worth trying the jpouch if you are up for it. Just realize that you may experience more issues with the jpouch such as not being able to eat everything, pouchitis, gas etc. I am happy enough with the pouch but I felt better with the bag. Gas issues are much easier to deal with the bag as many pouchers can't pass gas without having a bm. If you try the pouch and really don't like it you can go back to the bag.

Good luck, it's a hard choice.

As the others said, it's a very personal decision, and there's no guarantee.. but if it helps.. I had my pouch created 10yrs ago, I've had issues but nothing major. About 18 months ago I developed an absolute bugger of a fistula from my pouch that has turned my own life on its head. It's been horrific. Now I'm on the list to have my pouch removed and a permanent stoma.

But I wouldn't change the fact I had the pouch done, ever. I'm so glad I tried it, and don't regret a thing. Ultimately I drew a short straw, but I'd do it all again.

There's good and bad, like you have now with your stoma..  but I think the J Pouch's are amazing 😊..  If you have any personal questions about the pouches or want any particular details, ask anyone here, do your research, make yourself comfortable with whatever you decide..

Good luck 👍

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