Considering a J-Pouch After Ileostomy: Seeking Advice

I have an ileostomy now, and my doctor is thinking of trying a j-pouch. Should I try it? Is it a good idea? I'm afraid of complications.

How are you dealing with the ileo? Is everything okay and are you managing? Unfortunately, you don't see many successful j-pouchers on these sites,

If you are managing with the ileo, is there any medical need to go to a j pouch? Because in reality, if you can't manage with a pouch, as I've heard a lot of stories about the difficulties of them, you would end up having another procedure to go back to an ileo, leading to more recovery time and scar tissue.

You should look at all the information you can about day-to-day living with a j pouch and see if you think it's worth the potential for having it reversed again…

Ask your doctor to "try it" on himself. What a dope. Wants you to try it for no other medical reason?

Yeah, ask him to wear the bag for 24 hours. See how he feels about "trying" things.

Best advice from the members' experience here is: Don't do it.

Moments later... oh, saw your profile. Sorry to hear about this wheelchair thing. Can you stand up to poop? Because with a J-pouch, you need to evacuate like a normal person sitting on the loo. If that's a task, I'd stay with ileo; it's so much easier to manage and requires no future surgery.

Good luck. Also, remember the saying: if it's not broke, don't fix it? 😁

Sounds like he wants experience in this area. How many J pouches has he done? What has been the long-term success/failure rate? Why has he suggested this for you?

Get a second opinion with another surgeon.

There are no guarantees with any surgery. How many J pouches has Dr. done? I know someone that's had a J pouch for almost 40 years and another one coming up to 20 years with very few problems, so yes, they do work. But as already said, there are no guarantees. How are you coping with your ileo? Are you happy to live with it for the rest of your life and not let it stop you from getting on with living a normal life? Look at it this way: if you don't have a J pouch in 10 years' time, will you be thinking, "I wish I had that done. I know it would have worked for me?"

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It doesn't sound like you want the j-pouch. Personally, I would not consider it if it wasn't something I really wanted.

If this is something you really want, do your research and get a second opinion.

If you don't really want it, don't do it.

I would think that the ileostomy would be more convenient since you are wheelchair-bound. I've been grateful for having my twin stomas since my mobility is currently limited. No sitting on the toilet means less pulling myself up. But you know yourself best.

I am wheelchair-bound (neuro stuff). My ileostomy adds a lot of difficulties!
I have heard several horror stories about the J-pouch, like how awful it smells every time and frequency. It sounds like I have more research to do.

Thanks for replying.

I had a jpouch for 20 years. Life was not good. Chronic pouchitis, incomplete emptying, and terrible butt burn led to me getting anal fistulas. I have an ileostomy now, and my life is much better. I eat anything, no restrictions, and I don't have to urgently run to the toilet anymore.

Hello t

I had a j-pouch, and it was a disaster: pouchitis, cuffitis, and constant urgency. I tried for a year to wait for an improvement that didn't come, then went back to an ileo. I would have to question the doc's logic. I could be wrong, but I see urgency, wheelchair, and toilet as a disaster waiting to happen. The pouch apparently does work for some, but the success rate is poor, and of those successful ones, are they thriving or just surviving?

G-Day tmn68,

I also had a J-Pouch for 18 years with 18 years of problems. I demanded my surgeon remove it 4 years ago, and I am now enjoying a wonderful ileostomy with no problems.

You will hear of the odd good J-Pouch, but there are a lot of failed J-Pouches.

You're the one to make that decision, but personally, I would stay with the ileostomy.

The only other operation you might like to consider is getting a Barbie Butt. As you're in a wheelchair, it would stop you from having leaks of mucus and also eliminate cancer of the rectum.

Please keep us up to date, and good luck. Sending good vibes your way.

Regards, IGGIE

G-Day tmn68,

How did you go? Did you make a decision regarding a J-Pouch or not? If you decided to stay with the ileostomy, did you also decide on a Barbie Butt? With a J-Pouch, you would need to get out of your chair up to 8-10 times a day.

I have been thinking of you and wondering how you went.

Regards, IGGIE