Whether to get a pouch?

I had a wonderful experience with my temporary ileostomy and was very reluctant to trade it in for the unknown.....a fully functioning J-pouch. My son convinced me to go ahead and try the J-pouch or I'd never know if it would work for me. I could always revert to a permanent ileostomy. That was over 10 years ago when I was 62. I made the right decision! Best wishes!

Welcome to the site. There are no easy answers here. If you decide to stay with an ileostomy and have the final surgery there would be no way to change your mind later. If you decide to go for a j-pouch and it doesn't work out you could return to an ileostomy if it doesn't work out (which may or may not be easy to do).

I don't agree with your GI when s/he says 'why bother?' If you'd like to have plumbing that's a bit more 'normal' that's why one bothers.

But if you're fine with the ileostomy and it's causing no problems then stay with it. I'm also wondering why you would need surgery to remove the rectal stump if it's not causing any problems. We have several members here who have permanent ileostomies after failed j-pouches and they're doing fine. Those who've had problems with their non-functioning j-pouch have then opted to have it removed.

If everything is fine, maybe you should ask your doctors if you can leave everything as is and make a decision only if you have further problems.

kathy

I had my first surgery and had a temp end ileo and stayed like that for 2.5 years. Mainly as it really was not a good time to go through with the Jpouch. I knew I would always give it a go. Worst case is you go back to the perm ileo.

Im laying in my hospital bed typing this to you 48 hours after my takedown of my loop ileo and I feel great! Normal abdominal pain at the old stoma site and on the usual endone and oxycontin but I had about a dozen BM's so far and everything seems to be working well. I have sensation when I need to go and control (ability to hold on). I did have one unfortunate mess last night but thats to be expected when you first get the takedown, plus I just took 3x endone, 1x oxycontin, 1x nerve block so I was passed out pretty hard but besides that its worked perfect. Surgeon has said I can go home today, only 48 hours post surgery!

I hope by sharing my story it helps you decide.

Cheers,

JH

Surgeons will almost always tell you the j pouch is the greatest thing since sliced bread, until things start going wrong, and then suddenly they dont want to talk to you any more. First of all, dont ever let the "I can always go back to an illestomy" nonsense sway you. It is never that simple. It has ended up being the most aggravating decision I have ever faced in my life. I have been wanting to go back to an ileostomy for 20 years now, but keep putting up with the j pouch long as I can. Had surgery scheduled twice, and then cancelled because I started feeling somewhat better. From what I understand, the removal surgery can be worse than the colectomy. I know everyone is different, but I have never been the same person since my takedown surgery. The perfect health I enjoyed with an ileostomy dissappeared with takedown. So that is why I am down on the j pouch. Those who do well, will always recommend the surgery. It all comes down to how much misery and health problems you want to endure if the j pouch doesnt work well.

What everyone here says is true. Also keep in mind that according to studies, 98% of people with j-pouches would do it again as well as recommend it to friends or family in similar circumstances. Back in the eighties and nineties, failure rates were between 4-15%, but if you have a highly experienced surgeon, the j-pouch failure rates around the year 2000 were around 2%, so I figure they've improved even more since then.

If I were you, I'd take my time, do my research, and talk to as many people as possible, and read lots of blogs on it in order to help you make sure you make an informed decision. Also remember that most of the people who come to these forums are people who are struggling with some sort of issue and looking for help or advice or just to vent; most of the successful, happy j-pouchers are out living their lives and not hanging out in online support groups.

I have a blog that has some links to some other great blogs you can read, as well as links to several studies on success and satisfaction rates. (Click on the link in my signature and then go to my previous post called "Gratitude and Hope".)

Either way, I would wait if you can and give yourself time to mull things over and process until you are absolutely certain in your decision, because regardless of which direction you take, it is a very big step.

I would refer to bootstrap here. I would recommend it. I really did not handle my temporary illeostomy well. I was extremely self concious about it. CI had constant seal breaking. I think my site was too low and my bag had to be tucked into my pants all the time. I thought it was disgusting to have to handle the pouch all the time. The changing was a ridiculously inconvenient process.

I think my life is normal again with my J-pouch, obviously I would prefer a full colon and its not perfect 100% of the time. I avoid the correct foods that could cause blockages or upset the pouch. But I really hope I never have to go back to temporary ostomy.

I'm a teacher, and I have no trouble with my schedule and the bathroom. I can pick and choose the times I use the restroom- clearing out the pouch when I have time and then I don't feel the urgent pressure that used to control my life during class time. I have only been going 3-5 times daily. With a bad day or two every so often where I have to go maybe 8 max and I note what I ate or drank and avoid it next time. Life is good again, life is normal again. Only problem I'm still dealing with that upsets me on a real level is my night time continence- when I am sleeping I do not wake up through some leakage. This happens maybe half of the nights. So I wear an adult 'pad'- a diaper material pad that goes right in my own underwear so I feel I have more of my dignity that a full diaper.


I would recommend the surgery- it has made my life better.

also take the forum with a grain of salt with such a question. Most pouchers are doing just fine and have never questioned their decision. A far higher population than the general j-pouch community will be on here because they are having problems. Those who are doing just fine rarely visit the site.

Happy j poucher here. I would do it over again in a heartbeat.

I'm 52 had Jpouch surgery in July and am going on 14 weeks now
since takedown. I have been doing really well the whole time,
especially compared to what life was like with UC.

Back to work full time, surfing, camping and riding my motorcycle.

Still experimenting with my diet and there are a few things I've
learned to avoid, but hopefully with time that gets better too.

It's a hard call to make. My surgeon and I were talking about it
and she said one out of ten people seem to have a much harder time
adjusting. Nothing essentially different from the other nine
surgerywise but for some reason their system dosen't tolerate it
as well.

If you're going to do it, go into it with a positive, can do
attitude, stay as active as possible and make it work for you.

I agree with your doctor. If your adjusted and doing fine,great! You will always be disease free!

Thanks everyone for your advice, I still have not made up my mind, but was wondering if someone can tell me what pouchitis is like, I went through months of cramps and bloody diarrhea with my UC is that what it is like? and people mention that they found they have to avoid certain foods, is it certain things or varies from person to person.

Pouchitis can seem like UC symptomatically. However, when I have a bout, it's nothing near as bad as UC. So even with pouchitis it can be different for different people. For me it's lots of gas, poor emptying (never feels like you get it all out), frequency increases, more fluid. But a round of Flagyl and I'm good again. I actually take sulfasalazine for peripheral arthritis and have found it treats any inflammation in the pouch nicely, avoiding the pouchitis cycle almost all the time.

As for foods - I think we tolerate more over time. Don't let anyone tell you that you are restricted from what you can eat. I can eat anything at all I want, but there are some things I choose not to eat because they sometimes cause problems. For one, I have learned that eating chocolate before bed is a bad idea. Some people can't eat it at all. Maybe because I was allergic to it once in my life. Eggs can be another nuisance food (butt burn on the way out), and salad causes some people problems. Spicy foods - let me say, if things are flowing at a normal pace you can expect to feel them 5-10x as spicy on the way out as on the way in. As things slow down, and more gets absorbed before exit - even spicy foods aren't so bad.

Steve