J Pouch - Questions

The recovery from the other procedures is similar, or easier, than the previous surgery you've had, in my case at least. Some people think step 2 is harder than step 1 in a 3 step, but for me, it was easier. I was healthier and stronger going into it, I was out of the hospital faster...

The pro of the ileo, is that it's one surgery and done. it also preserves the most of your GI tract. When you think about it, with each procedure it's using a little more. The end ileo allows you to use your whole terminal ileum.

I personally have no regrets about going forward with the jpouch. Yes, it's more steps, and there's more healing, but life without needing to have a medical supply company in your life, is worth it for me. Sure, the j-pouch has a lot of the same issues you would have with an ileo, you still empty about the same amount of times a day (4x-8x), you still have sounds (but only when you empty, the ileo can make sounds anytime involuntarily), you still have odors that smell like what you ate, things are still not formed - same as ileo, the benefit is not having something attached to your body or needing supplies. The j-pouch is invisible aside from the scars. With the ileo, I was so thankful to have my life back, but I was still finding it difficult to deal with gas since it filled up my bag. I was also hating the noises, the odors. I can totally understand people wanting to stick with the ileo though, with the ileo, the result you have is what you have, there's no pouchitis or future things to look out for, generally, it's done. The pouch can have a broader range of results. That said, the freedom to travel without bringing supplies along is great. To look down and be free of the appliance is nice.

If you've already had the jpouch created, there is absolutely no reason to question turning back IMO. The loop ileo is not easy to deal with. I could see stopping if you were having a 3 step and you had the end ileo and you were happy, but no one stays with a loop forever, you would likely end up needing another surgery regardless, to either close up the back and make it perm, or to go tot he j-pouch.

with the jpouch, the consistency is very varied. it could be like little rocks, or like liquid. When I drink a lot of fluids it's definitely looser. I do not have "urgency" like with UC, but you do feel the need to go. You can wait and take your time, but in the beginning, you will feel a bit of discomfort if you try to wait too long. People tend to get up in the night to empty once. I did with my ileo too. I am not a sound sleeper at all which I am sure doesn't help. Emptying is like urinating, push and let it out, no waiting, no repeat trips.

Some people wait to have further surgeries until after they have children. I would talk to my doctor if that's a consideration for you. Some people have babies after j-pouch though. Have you been to j-pouch.org? There are a lot more jpouchers there. There are literally only a handful here. Most of the people who have had surgery here, have taken off and gotten their lives back.

So you just had a colectomy? Most likely you would need two more surgeries; one to build the j-pouch and then another surgery to connect everything once it has healed(minor surgery).

I have symptoms after getting my jpouch, about 10% have pouchitis. I really like my jpouch, I sleep through the night without waking up and I never have urgency. Yes, I still have to take medicine to treat my chronic pouchitis. It’s not nearly as bad as when I was living with UC.