I was an infrequent sufferer of mild ulcerative colitis for 25 years until last October, 2007 when an unusually severe episode caused perforations in my colon. My illeostomy was performed in early December. I was 24 days in the hospital, very rough, but by mid February ’08 I was feeling quite well. Unlike many people who suffer greatly for years and find an illeostomy a relief, my disease mild and infrequent and the illeostomy is my torment. Until recently I was convinced I wanted jpouch surgery; the accidents, embarrassment, and wardrobe problems were more than I wanted to endure. Then I found this site and began reading about the problems patients who reconnect have. The trips to the bathroom, all the thing people can’t eat, medications to thicken, and everybody’s eating marshmallows.
I am 55 years old, very healthy, physically and sexually active. I have not changed my diet in anyway from what it was before the surgery. I eat and drink whatever I want including hot and spicy and alcohol. The illeostomy does not limit any of my activities including snow skiing and weight lifting. The “accidents” have become rare. My biggest problem is the illeostomy is too high, right at my belt line, and I must wear suspenders and be careful, especially when sitting (my job) not to pinch off the pouch. The location can be “revised” as my surgeon puts it, to a lower location.
On the other hand I still hate having this thing. Occasionally it leaks, there is expense, and honestly, and mostly it is self image. I have read all those messages about, “If some one really loves you they will accept you the way you are”. Get serious. It doesn’t make me feel any better.
So here is my quandary:
1) Given the way I have it now am I crazy to even think about putting myself through another surgery and all that may go with it?
2) Do the complications and problems I read about in these discussions go away? I mean is it eventually worth it?
3) Where are all the people who have the surgery and do well? Are they just so happy they do not need to participate in these discussions anymore? It gives the impression most people are not happy with the results.
I have cancelled my pre-surgery consultation to give myself more time to think about it and would truly value your open and honest opinions. Thank you.

Al Y.

All studies show that the majority (~85%) of people with j pouches are quite satisfied with them. Sure, it's not like having a healthy colon, and the ileostomy frankly does offer certain limited advantages, but the bottom line is that things generally turn out quite well.

As far as where all of these people who do well are, I'd guess they're out living their lives. My UC had a relapsing/remitting course, and I know damn well that when things were quiet, the last thing I wanted to waste time on was reading and posting on the internet about it. It's pretty well established that the population of forums such as these is very skewed toward those who have had/are having complications.

That being said, I understand your trepidation. Even though the odds are strongly in favor of a positive outcome, there is still a significant percentage of people who go on to have problems. There is no right or wrong decision. I'd recommend going to the presurgical consult and discussing some of your concerns with the surgeon. Also, my surgeon gave me some phone numbers of individuals who'd had the procedure already and I found that talking with them was very helpful.

One more thing - if the j pouch doesn't work out, you can always go back to an ileostomy. I know it's not quite so simple in reality and dealing with a failed j pouch and multiple surgeries would be a nightmare in and of itself, but the option would be there.

It's really a matter of the devil you know vs. the devil you don't know.

Insecto put it really well, the devil you know vs the devil you don't. Make sure you find a surgeon that is very skilled in ileal pouches. You don't want someone practicing on this one. I conferred with my fav surgeon and he was honest and blunt,"I know just about enough to pass the test." But he had some good feed-back and a good sounding board. (no, he didn't do my surgery, but good advice)
You may always wonder if you don't try....you may avoid all kinds of trouble if you stay as you are, tough choice.
Would you happen to be a praying man? When my kids can't see which fork in the road to take, I tell them to stay on their knees til they have a peace that passes all understanding.
I knew for me, a perm ileostomy was not something I could do. Lots of folks come to terms with it, accept it and do fine. I know I can't do that. I had the surgeries, am satisfied with the pouch, I have an S , no one ever answered that question as to why S vs J. Whatever, its ok. I have alot of risk factors and they expected chronic pouchitis which I have, its a balancing act between antibiotics and probiotics, but livable. I am VERY glad to not have that bag hanging off my side. Now, I do have a obsessive compulsive component, and I really do not like things out of order, intestine sticking out my side was way past my comfort zone.
I think ,were it me, I would keep that pre-op consult. Talk to your family doc or GI or whoever you trust ,and I think you will make the best decision for you when YOU are ready to make one. Do you have a time frame that you are working around, or are you free to choose when you are really ready?
To be honest, I never even considered a perm. ileostomy.
I hope all works out best for you.
LoriP

I am 5 weeks post take down surgery. I had an ileostomy and loop ileostomy for just over a year in total.

If I knew what I know now about jpouches when I was making the decision to go for it I might well have stuck with the bag. Apparantly my jpouch performance at this stage is much better than most!

My brother also had UC and had his colon removed and he stuck with the bag. He does not have to worry about diet, where the toilets are, pouchitis, cuffitis, doesn't take any meds, has no discomfort or pain and forgets most of the time he has a bag. He has an active life and plays in a rock band and manages his land, he is 56.

The issue for me with a bag was the risk of leaks,which I eventually resolved, and of course the appearance. Well with a jpouch you have got lots of other risks and as for appearance, well the scaring if not that attractive.

With the bag I went water skiing, snow skiing, off road motorcyling all weekend, sailing, mountain biking for 30 miles cross country etc etc. I am not how I am going to cope doing these activties with a jpouch. My surgeon tells me I should be able to. Whereas with a bag I knew that I could.

As for the fallback plan of having the jpouch removed and going back to a bag I think this would be a disaster. Having more major surgery and less intestine may result in more fluid output and all the problems that causes.

Maybe in six months time I will be very pleased with my jpouch decision, but it is a maybe.

Investigate it as much as you can and speak to people face to face who have had the operation.

go for it. I had my pouch done in one stage and the first words out of my mouth when I awoke, was I hope he did it in one step and avoided the ileostomy. The outside world has a hard time accepting the "bag". When you mention this surgery, thats the first thing they think of or ask "do you have to wear a bag"? I would not want that. Remember, there are many posts here from people with problems; there are many others who adapt with no problems. Bottom line is you will end up , after a year , going 6-8 times a day. Initially, (Im 5 weeks post op) Im going about 15 times, but seems to be lessening now.

Thank to all of you who responded to my message. Obviously there is no easy answer to my question. It is my decision, and yes, I am looking for signs from above. My first "experience" came during my illeostomy hospitaliztion, when entering the third week my grandmother, dead for 20 years walked in my room, and either promised, or instructed me (I have never been quite sure which) that it was "time for you to start getting better", turned around and left. It was the turning point in my recovery and I only got better, rapidly, after that.

While convinced early on my situation sucked, big time, and I was not about to continue with a bag, the accidents, embarrasment and stigma, time made things much easier. Experience has all but eliminated the accidents, and a good sense of humor and a really pretty normal lifestyle had me convinced I sould leave good enough alone. I canceled my pre-op (jpouch) consultion to think it over, part of which was dropping in on and eventually joining this discussion group.

Your replies, public and private, have been most welcome and reassuring. No one came forth with "The Answer", but I never expected that. I think most revealing was no one came forward and said, "What the hell are you thinking about!!! You eat and do what you want? Why would you want to mess that up?" Answer: Because nobody wants to live with a bag of pooh hanging off their front. Not me, either.

I have not made up my mind, but leaning back the other way for sure. I do not want to have to wonder, "What if I had tried the jpouch", everytime I have an accident or embarrasment in the future. "Go for it", "the devil you don't know", what do I have to loose? I think I need to do my best to get in really good shape, know there will be rough month ahead, and get this silly baggie of pooh the hell off me!

Thank you all. I will keep you advised.

al

Obviously I meant "rough months ahead. (I should be so lucky to have a month long recovery. (I gave my secretary the day off or she would have caught that.))

i like what you said about doing your best to get in really good shape to prepare for whatever comes next. that mentality helped me so much, and made each stage much more manageable for me. it not only speeds on recovery, but gives you focus and a feeling that you can be proactive in other ways. best to you!
ellen