This is a very personal decision, and there is no wrong choice, other than the one you feel coerced into.

All I can tell you is that I don't have incontinence. Before colectomy I was literally chained to my toilet.

Since surgery, I have not been incontinent in any significant way. In nearly 17 years I have had some minor incontinence maybe half a dozen times. All of these times were when I had pouchitis or some GI bug and had leakage during a cough or sneeze without clenching my butt first. But it has never beena regular thing. Even in the post op period, I did not have even nocturnal leakage.

Some people do struggle with this, but I would not consider it common.

For me, I was more worried about ileostomy appliance leakage, so am glad not to have to deal with it. But, with an end ileostomy this is less of an issue.

Jan

Please do not just think you can "try out" the jpouch and if it doesnt work, simply go back to an ileostomy. Whoever is telling you that clearly has no clue what that process entails. It is more surgeries, one of which is far more extensive than any of the jpouch surgeries, more surgical complication risk, more trauma to your body, more time out of your life, and i could go on. So please make decisions based on "knowing" if you get a jpouch, you will intend to keep it. It is not something to "try out".

Also dont allow your surgeon to disuade you from going straight to a permanant end ileo. They do that because jpouch creation is a more complicated snazzy surgery and good for their resumes. If you want to get on with your life and have probably the least amount of surgeries and potential problems and you have no physical image concerns about an ileostomy. Then going straight to an end ileo is probably your best bet.

FYI. I now have a perm ileo after having my jpouch removed. My first surgeon succesfully persuaded me to "try out" the jpouch when i was in a thought process similar to yours many years ago.

I strongly recommend doing the three step j-pouch procedure if you're on the fence at all about the j-pouch. The first surgery will remove your abdominal colon and create an end ileostomy. Because the rectum is not removed, you will have the option open to you of either continuing towards a j-pouch (second step would remove the rectum, construct the j-pouch, and make a loop ileostomy) or making your end ileostomy permanent by removing the rectum and possibly performing an anal closure.

I strongly agree with liz11 -- I haven't had personal experience with j-pouch removal but I have read enough to know that "trying out" the j-pouch is not a sane way to approach this. If you opt to not construct the j-pouch in your first surgery, you will have several months in which to try out the end ileostomy and decide based on personal experience how you want to proceed.

I LOVED my end ileostomy and came very close to making it permanent, but after a LOT of soul searching, conversations with my family, therapist, GI, and surgeon (probably in that order of importance) I decided to move forward and have the j-pouch constructed. I did this because I believe a j-pouch will work for me for the rest of my life -- not because I think it's "worth a try".

As someone who is not that far removed from j-pouch construction surgery, and can remember exactly how I felt after the surgery, I'll tell you that if you don't really WANT that j-pouch, you will be even more miserable asking yourself why you ever made this decision. My surgeon calls this the "highly motivated patient." Don't let your surgeon bully you into extra major surgeries! Make up your own mind and good luck.

Living with a well functioning J-pouch is so much easier than dealing with an ileostomy. I was reluctant to give up my ileostomy for the unknown effects of having a J-pouch. That was over 10 years ago. Glad I did! My J-pouch is a godsend. No incontinence challenges unless I'm sick and I know how to deal with those short lived times.

quote:

The permanent ileostomy sounds like a good deal to me, if it means I will no longer have to jump up and run to the bathroom. Being an RN, I have no issues with the care of a stoma, and being older I have no attachment to maintaining the integrity of my abdominal skin.

My surgeon says he would like to try the j-pouch. My support group suggested to try it, and if it doesn't work out, just go back to the ileostomy.

As was previously posted this kind of thinking shows no knowledge of the complexities and potential complications of J pouch excision surgery. I had my J pouch removed primarily because of incontinence. I did not suffer from incontinence prior to surgery even though I had UC for 25 years. My incontinence began after the pouch surgery. It is a not an unusual problem to have night time incontinence and minor leakage. Mine was much worse than what is typically experienced. That said Most people dont have an incontinence problem with a J pouch but it is a possibility.

In effect when you opt for a end ileo you will have permanent incontinence, you have no control over when stool comes out of your stoma. However with a good stoma and pouching system you take control of the output and live a very normal life. Personal decision of course but in your situation I would go for the end ileo. Just make sure you get a good stoma, as a flush or recessed stoma is a nightmare. IMO output hole should be at least 3/4 of an inch or more above the skin line, very critical.

I missed the part in your post where you had radiation treatment for rectal cancer. I had the exact same treatment you had. This makes a J pouch even more problematic. Definitely go for the end ileo, in my mind given my experience this is not even a close call.

Another option you can consider is the Barnett Continent Ileostomy Reservoir (BBIR). This procedure is a modification of the Kock pouch and has been successfully performed since the late 1980's. The surgeon creates an internal pouch and valve from the last segment of small intestine and you drain it 2-5 times a day with a catheter. There are web sites for the BCIR and they are performed at hospitals in Los Angeles and St Petersburg, FL. I had this surgery two months ago when my J Pouch failed after 30 years and have no regrets about my decision. The folks in Florida can mail you a list of about 300 BCIR patients who you can contact for additional information. Good luck with whatever option you select.

My surgeon told me that I would experience some incontinence for a bit post-op. I saw him at about 6 weeks post and said that I was still suffering with incontinence. Even tho it was over 10 years ago, I remember his reply as if it were yesterday: "For some people, the leakage and incontinence doesn't go away." I was floored. He had never even mentioned that this could happen!

My j-pouch is almost 12 years old. I have leakage and incontinence ALL THE TIME. I wear panty liners and pads 24/7. Most of the time, it's leakage of that stuff called effluent. Regardless, the butt burn is pretty damn lousy.

For me, I don't want to trade my pads for an ostomy bag. It's the lesser of two evils, in my humble opinion. As its been said before, this really is a personal decision.

Good luck to you!
Jilly

I had some nighttime leakage VERY early on, but I've never had incontinence with my J pouch. I had an anorectal manometry test to check my sphincters before surgery, and Kegel'd bunches.

I never have leakage at night now, nor have i for probably the last 15 years (except for maybe one to two times, when I was very ill)... Again, not true incontinence, just leakage because I was so sickthose couple of times.

I was lucky not to have nighttime leakage as a post-takedown issue. That said, like rachel, I have minor leakage happen on a couple of occasions since, but it was also when I was already ill with gastroenteritis.

I had one "accident" with my pouch the day after coming home from the hospital, a result of attempting to "hold it as long as I could" as per my surgeon's instructions. I was hit with a rectal spasm and couldn't make it to the washroom in time. I did have some painful rectal spasms in the first 8 weeks post-takedown, so after that first incident, I didn't endeavour to continue holding it indefinitely.

For me it's a fairly reliable sign of pouchitis. When the pouchitis is treated it goes away.

Scott -- is it the FIRST sign of pouchitis? Like, if I felt I was coming down with pouchitis based on other signs I would be fine wearing a pad and expecting some leakage until I got treatment. But if the leakage is the first sign, and you pretty much have to be on guard for it at all times, that would be unfortunate...

Before I went on Cipro full-time, pouchitis tended to sneak up on me. So while nighttime issues probably weren't the first sign, they were often the first sign that made me slap my forehead and notice what was happening. I never got more extreme than a towel on top of the sheet, but people differ in how disturbing they find an accident, and what they're willing to go through to prevent it from making a mess. Nobody likes it, of course, but sleeping in Depends would be a big deal, too.

Since you seem to have no problem with having an end ileo, I'd suggest trying that first. If you're comfortable with it, keep it. Why have more surgeries than you need?

Not sure if this will be your last prep per say...some people say that when you get your pouch scoped they are told they need to do some prep work beforehand, i have also heard some who dont need to prep and they do some kind of enema during the procedure..

No matter what I'm glad you made up your mind on what it is that you want. I went through the whole decision process, was really stuck and had no clue what i wanted to do, both of them scared me to death...I went into the J-Pouch with the idea of what some on here called ludicrous that if this didnt work out i could always go back to end-ileo or loop...whatever it was that i had the first time. I'm glad right now that i made this decision for the J-pouch, knock on wood i have not had incontinence yet, though it seems like its going to happen to everyone at some point with pouchitis or being very ill in general..I'm only 2 months and a week after takedown and i do already feel better than i did with UC..and from what i hear things can really only improve now with time. TIME is your biggest healing factor. Wish you all the luck in recovery, at times its going to be hard, bad thoughts come up and all but that passes. Good Luck Saharagold...digging your name btw

There's a little prep for pouchoscopy, and a fair bit of variation, but it's nothing like a colon prep unless prescribed by a sadist.

Wow reading about this incontinence really does scare me. What if you plan ahead your meals , like having a schedule everytime you eat. lkie at 8:00 am breakfast snack at 10o lunch at 12:00 Snack at 3:00 dinner at 5o then last snack at 8:00, then of course drink as much as you can through out the day, would this help to prevent this? I know most of us work and may have to adjust to a schedule that is right for them! I know having my illeostomy I never had this problem, when I had time to go use the restroom I did.Sometimes my ag was quite full but as long as I did not carry any odor or have leakage I was fine. I wear scrubs at work so if it was full or full of gas then ok now I have to go but at least I had a way to hide it wearing the scrubs. Lord please dont make me experience this!! I want to move on with my life after this last step so I will do whatever I need to do to avoid this, any advice would be great??? I want a BABY!!!!

Is this why they advertise the leakage product at the top of the screen, it must be common? like I said I will do anything and everything to avoid this, so any advice would be great??