Comparing J-Pouch and Ileostomy Experiences

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Danno

Hey all,

For those of you who tried a J-pouch and went back to a permanent ileostomy, what was your experience with the quality of the second in comparison to the first?

I understand you lose all the intestines used to create the pouch but I'm curious if it's a completely new learning experience or if there were similarities.

Deciding to get the J-pouch is a tough choice, but I would feel 1000x more confident in my decision if there was a chance to come back to what I have now, or close.

Currently I have great digestion, no dehydration, thick output I empty 2-4 times in a 24-hour period, and basically eat anything with minimal thought on chewing.

I want to try the pouch since (by my logic) I could transfer this great experience to the pouch. Spoke to my surgeon about the quality of his pouches and his response was.



90% success rate
10% of that 90% revert back to an ostomy within 10 years.
The rest love long happy lives with minimal issues.

My history is UC which led to an ileostomy (by choice) to try and enjoy life a bit. I asked if there was any chance UC or any related unless could come back and he seemed pretty confident in his answer, which was a hard no. Not to rule out other complications, but UC was not one of them. (Dr. Brar - Mount Sinai Toronto)

He said they also create the pouch by going in your butt hole, so very minimal surgery; I suppose the only recovery is the new placement of the loop ileostomy. They said this new study process they've been doing for about 8 years that allows for more visibility when constructing the pouch since the laparoscopic method puts them behind the pelvic bone and increases the chances of open surgery and reduce other potential issues. Pretty neat.

Anyway. My main question is the comparison. I just talk a lot.

Hairdresser

Hi. I have an ileostomy after years of UC. I would never change for fear of pain and discomfort again. I am not saying you shouldn't get a Jpouch, and I wish you all the luck with it. I'm just wondering why would you want to? You seem happy with your ileostomy, so why change? "If it isn't broke, why fix it?" Just wondering. I wish you nothing but health and success with your J pouch.

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eefyjig

Hi Danno, you are asking tons of questions and that's good! I'm not here to talk you out of anything but I will share what I know. You can develop "cuffitis," which is inflammation in the rectal stump that remains and that your jpouch connects to. You can also develop "pouchitis," an inflammation of the jpouch itself. Is this all due to UC? I don't know that answer, I just know that I had UC and I had either pouchitis or cuffitis, or both, on and off but mostly on for the five years I had my jpouch. Your experience will definitely be different from what you're experiencing now, it's just a matter of how you define ok. There are pros and cons to an ostomy but feeling so much better is probably the biggest pro. It's such a big life-changing decision. Have you shared all of your concerns, like really ALL of them, with your surgeon? If you feel confident in him, that's a very good thing. And reversing your reversal is an option down the line if it came to that. My mom used to say, "nothing is forever" and I found a lot of comfort in that.

Danno
Reply to Hairdresser

When I was sick with UC, the bathroom breaks became my new normal. Sadly, I'm used to it.

It was the urgency that ruined my life. If I could go back to a "normal" life with no urgency and a few more bathroom breaks than a normal person, I see that as a success.

Plus I've always been into fitness and though it's not the end of the world that I have an external appliance, it would also be nice to not. Lol

I still look down at it every day and it just does feel like me. Maybe if I try and fail I would be more accepting.

Mom, a young guy with a lot of fight left in me. :)

Danno
Reply to eefyjig

Are your first and second stomas similar or would you consider the second a "less behaved" version?

Yeah, I believe those other forms of inflammation come from something unrelated to UC. Similar symptoms.

Yes, things are good compared to my UC days, but with the slightest chance I could have a successful jpouch, I do believe I will feel happier. Sure, I'll poop more than the average, but I'll have control.

I've been into fitness my whole life and though image isn't everything, it's still important to me at my age. I know I can still be fit with a stoma, but there's more risk. I like to push myself.

Overall, it just comes down to the "what if" factor. What if everything goes well? I was scared to death about my stoma, especially since it was a choice not an emergency. But I'm happy I did it. I'm hoping future me looks back on today and says the same thing.

"If it ain't broke, why fix it" isn't my style. I'm more of a "happiness is on the other side of fear" kind of guy.

 
Words of Encouragement from Ostomy Advocates I Hollister
eefyjig
Reply to Danno

Other than having fewer intestines now and a faster transit time for output, both of my stomas worked fine. I also had to move to the other side of my belly for the second one, so I have a lovely crater where the first one was. Sounds like you are sure. You know yourself really well and have taken everything into consideration. Go for it!

w30bob

Hi Danno,

This site can answer any questions you have about getting a J-pouch! You might as well go right to the source!

https://www.j-pouch.org/topic/curious-about-success-rates

:o)

Danno
Reply to eefyjig

I do appreciate hearing both sides to help me with my decision. I'm honestly more scared of having a loop ileostomy than anything, even though temporary. And of course, the recovery/training of the pouch once connected and working sounds fun. Lol.

I do understand there's a lot of risk that could land me back where I am, but at least that's an option. Are you happy you tried? Would it eat away at you if you didn't?

Danno
Reply to w30bob

But my question is for someone with an ostomy who had previously had a J-pouch. I'll see what people say there too. Thanks for the link.

w30bob
Reply to Danno

That's a whole site full of them.

:o)

Danno
Reply to w30bob

Great site. Going to dive into it more.

CrappyColon
Reply to w30bob

I think it's funny a Calmoseptine ad pops up but it was one of the things I was told to make sure I had for a reason.

Hisbiscus
Reply to CrappyColon

OMG, that Calmoseptine ad, lol!! I had to use that stuff religiously prior to my ostomy. Don't ever wanna see that stuff again. Haha!

CrappyColon
Reply to Hisbiscus

It's in every bathroom in my house

Hisbiscus
Reply to CrappyColon

It is good stuff though. The reason I had to use it was horrible though.