J Pouch vs Ileostomy

There is no perfect surgery, but there is a surgery that is right for you. All of the surgery choices have their advantages and disadvantages. I sat down, when making this decision and wrote out the pros and cons of each surgery; permanent ileo, j-pouch, and k-pouch. I talked with people who had all surgeries. I then weighed my lifestyle to those choices. I am very active; engage in long distance hikes in the range of 100-200 miles; I back pack, and I travel abroad to third world countries to hike. I ended up choosing the j-pouch and it has exceeded my expectations.

The jpouch surgery comes with a long recovery; but what I knew what to expect, went in prepared and never looked back.

Sue

There is no certain outcome in any of these surgeries and that is the problem in making a decision. Of all the outcomes the end Ileosotomy is probably most predictable but even there issues can arise. Do the research, take your time bring questions to the board. My experience with the J pouch has been bad but most people are quite satisfied, When they work well they are great and when they dont (like mine) they are horrible. I recently went to an end ileostomy. In hind sight I just should have gone with that to begin with. There is a theory out there and I used to subscibe to it, that go ahead and try the J pouch if it doesnt work you can always go to the ileostomy. This sounds so logical that everyone leaves out the issues with this concept. The issues are at least two additional surgeries and all the associated complications these are no small thing. So make an educated choice and go forward

Which ever way you go please have it done laproscopically. In hind sight I wish I had known about this option and the importance of keeping scars and adhesions to as few as possible.

Sue's method is a good way to to think through it all. I have not had the best experience but part of that is due to my age, prior surgeries and other autoimmune diseases.

It's always in the back of my head that I can always go back to an ileostomy if my j-pouch doesn't work out. I was in a rush to get from surgery #1 to #2 and had them 8 weeks apart. I wish I would have kept the ileo longer and let everything heal more before the take down.

I hated the stoma but mine was in a bad location due to the needs of the j-pouch, and I had infections and lots of drama.

If I had not gone for the j-pouch I would have always wondered how it could have been. If you might have any doubts and want to keep your stoma longer I'd suggest you ask the surgeon to place it in a good location, just in case you want to use it longer.

Best of luck and please keep us up to date!

It is hard to know exactly what to tell you about this, because we each have our own bias as to the j pouch surgery. My pouch has been nothing but trouble from the start, so of course I should say "dont ever get a j pouch" Those whom have had good luck, will recommend it. But dont fall for the line, "I can always try it out to see if it will work, if not, I can always get an illeostomy." It is never that simple. If you get a j pouch that doesnt work good, then you will be putting up with varying degrees of misery for quite some time, maybe years, until you cant take it any more, and get it removed. And from what I understand, removal surgery is even more risky and complicated than the original surgery. I knew from the beginning, the j pouch was a mistake for me, and I always said that when the day comes they have to open me up for any reason, then that thing is coming out, and I'm getting my ileostomy. Well, its been 22 years now, and I am still waiting. Twice, I was doing so poor, I was consulting with surgeons, and getting ready for the ileostomy. But then I recovered enough that I put off the surgery. They dang near killed me with the first surgery, and I'm scared they will finish me off with removal surgery. So now I wait until the day when the misery from the j pouch, and risk of it killing me is greater than the risk from removal surgery. My personal biased opinion on the matter is that someone should get an ileostomy first, see how that goes, and if it is not working out then go for a j pouch. But as a guy, having an ileostomy causes me no problems with self image, or whatever. Women generally don't look on it the same way. I guess my biggest gripe is when I look at my mom who has had an ileostomy for 50 years now, she has not once had a single health related problem from it in all that time. Me, I am happy when I get up and actually feel good that day. Because I know tomorrow I might feel like crap again. But that is just me. If you do get a j pouch, at least the odds are in your favor of having a decent working one. Best of luck whatever you decide.

Mark makes a good point. If you have the ileo and then go for a j-pouch you usually end up with 3 surgeries rather than 2, which might not be a bad idea anyway.

My daughter's friend sent me a DVD she produced about how she's living with a permanent ileo after getting rid of her j-pouch. She was very adamant that the j-pouch was not the way to go because of her bad experiences with it. If you PM me your address I will mail it to you. She shows how she deals with wearing a 2 piece swimming suit and other situations. There are also Christian references in it as well but not overwhelmingly.

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Well, its been 22 years now, and I am still waiting.

I went through 18 months of difficulties and called it quits. The surgery from J to an ileostomy varies in how you go about it. No way to know until you get into it. I opted just to be disconnected and have an end ileo, figuring maybe a 1 hour surgery but due to adhesions it took 3 hours. We were going to remove the pouch if it was "easy" but upon looking at it would have been another 3 hours due to adhesions and this was not removing the anus and closing things up (I will not do this). However my surgeon has seen pouches basically "fall out" so one never knows. I told him I did not want a big surgery now so he stopped. Having just had the surgery less then 2 weeks ago I am already happy I did it, but yes I will likely have to get the pouch removed in the future