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 can only speak for myself but I'm so happy with my pouch. I had a bag for a year and a half and I hated it. The pouch allows me to live a normal life again.

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.

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.

Most of us can pass gas while sleeping, and I really hated how the bag filled up with gas in the morning. I was happy with the bag, but that ballon in the morning really annoyed me. Life with the pouch is much better than life with a bag, although life with the bag for me was not terrible either.

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 👍

Hi again

Sorry I asked and disappeared. I got super busy so it slipped my mind. Thank you so much all of you for taking time to answer. It really helped.

I still am terrified, but more confident that it might be the correct decision for me to get a pouch.

@Scott F posted:

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!

Yes it's exactly the problem. Deciding between the known and the unknown. And I'm not a big chance taker so I don't like it.

I feel it's very in the way of the stomach belt on a backpack or a child carrier when I go hiking. So I can really see that benefit

@Chook2 posted:

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.

Yes, the constant worry about leaks, and having to be sure I have change and new bag at all times is probably the biggest reason why I would like the pouch

@Doug K posted:

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.

Unfortunately Norway is a tiny country with a population of about a million more then Los Angeles. So we don't have a center of excellence, they are all done in one of the hospitals in the capital. I hope and think they know what they are doing. And I don't even know if they have just a few surgeons that do it so they get really experienced, or if they do it more random. But I will ask when I get to know who will do my surgery.

From what I understand, going back is not very easy. I got told I most likely would end up with a loop ileostomy in that case, and they really suck. Having to cut holes in the bag, and leaking more.

@PouchLogic posted:

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.

So there is absolutely no correlation between a good bag and a good pouch? I can eat everything now but that can change? Strange!

Gas and pouchitis I'm prepared for. But I normally don't have a huge gas production with the bag, so I hope it will be fine

@Former Member posted:

Most of us can pass gas while sleeping, and I really hated how the bag filled up with gas in the morning. I was happy with the bag, but that ballon in the morning really annoyed me. Life with the pouch is much better than life with a bag, although life with the bag for me was not terrible either.

I agree. It's normally not a huge problem for me, but it is very annoying the times when it happens. Pancaking resulting in leaks in the night or morning is what annoys me the most

@F'ing Fistula posted:

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 👍

Thanks for the advice. I have been reading alot here on this great forum about it. And I feel the general agreement is that most are very happy with it, even whith the issues it might cause. And the people that have to go back are happy with the years they got, and would do it again.

I think what I worry about the most is the number of toilet visits. Because I really don't want to be in that 2 or 10 % group with 20 toilet visits a day. That would make my life way more difficult then it is now. But I guess it's no other way to find out then to try.

I figure that if I get a good or average outcome, I will be very happy. If it's a "bad" outcome, I will be pissed and disappointed. But from what the doctors say, my chances are good.

Hi, I am 70 , have an illiostomy (5 years), now have a very large hernia and getting frequent blockages.

I am having a hernia repair and. Jpouch surgery tomorrow morning. I researched where to get this surgery and drove 9 hours to have it at the Cleveland Clinic. I urge you to do much research and ask lots of questions before you choose a surgeon.

I am  apprehensive about  the surgery esp. at my age . I will find out soon!

You can do great at that age.  I read a lot of research and as long as your anus muscles are good, older patients do well with the JPouch.  Best of luck!

I have had my pouch for 18 years and it has been good. I hated the bag - could not wait to get rid of it. I have had some issues, but I would do it all over again if I had to. I have chronic pouchitis but that is controlled with antibiotics. Probably the hardest thing with the pouch is that mine can be unpredictable. Usually I go to the bathroom on a regular schedule, but sometimes it decides to throw me for a loop and do it’s own thing. I just deal with it. Also, I can hold it for pretty long periods of time.

Find the most experienced doc you can.

I had my hernia repair and Jpouch surgery Jan 5 and I am still in the hospital today.  The first 3 days - steady improvement, but then they tried to thicken the output with Imodium and it all just started backing up until the end of that day I threw it all up and felt 100 times better. So I started a liquid food today you know, chicken broth, Popsicles, fruit drink, etc. today is January 14 in hospital much longer than I could’ve predicted. Remember this is only the creation of the loop ileostomy and then a 3 to 4 month wait in between surgeries before .

I will be happy when I’m home

@Roxy64 I was in the hospital for ten long days after my surgery. Once it’s over it becomes just a memory, but while it’s going on: sheesh!

In my opinion, there is only one way to find out. I think you will be happier with the J-pouch, I know I am much happier with the J-pouch than the bag. I would say give it a chance and if it does not work, at least you can say you tried

Thanks for the replies and positive comments. I am still in the hospital but feeling much better with the loop Illiostomy . Hope to be discharged once my output thickens. The the big change in diet has to happen before takedown.

roxy