I had UC for 30 years. Most of the time I was fine but had major relapses. Eventually it got me last year and I had my colon removed in Feb 2007. I had a J-Pouch formed in Feb this year.

My surgeon said that if he was me he would go for the J-Pouch. He is a Professor in this area and has done at least 350 operations over the last 10 years. So he knows his stuff.

So I had an ileostomy for about a year. Initially I had lots of problems with getting the base plate to seal correctly as the stoma was inset into my abdomen. I have no idea why as I am a slim 11 stone and had a flat abdomen. This made me angry because I could see no reason why the surgeons could not have done a better job. So I had lots of leaks, all very messy and had to keep trying different bags etc.

However, I got very fit again and eventually I found a two piece bag system that worked well. Two piece is good because you fit the flange first and you can see how good a fit it is around the stoma. And then you clip on or stick the bag on. I then changed the bag every day and the base plate every other day. The base plate had to be a convex shape to fit into the recessed area around the stoma.

I had a good stoma nurse, but at the end of the day it was up to me to sought the problem.

I hated the bag. But in practice I could do everything, sail, off road motorbike, water ski, moutain bike for 50 miles plus etc etc. I could also drink and eat anything. I also have a demanding job, on an airplane every other week travelling around Europe.

I have to take my bag stuff with me and that is stressful because if you forget to take some of your supplies or they get lost you really have a big problem. So I carry my supplies with me when travelling. And all was fine.

I had the loop ileostomoy done this Feb and this has been much more troublesome. I had to go all through the process of finding new kit to work but eventually I have. The output, is more frequent which means more trips to the loo and more fluid. My body also is taking some time to recover, my liver is giving abnormal readings and I feel weak and tierd etc. But I am told it will recover. In fairness to the surgeons I was told to expect these problems (execpt the liver issue).

My J-Pouch, albiet not connected, already seems to get inflamed and I get output. So I take antibiotics and the inflamation goes and the output stops. All very rare.

However, I had the J-Pouch examined a couple a weeks ago and it has sealed up fine.

I was due to have the takedown op in July but this will be put back until my liver repairs and I get stronger.

My brother also suddendly got UC 3 years ago at the age of 53 and had to have his colon removed. He went for the ileostomy operation only, he did have the choise and year to think about it.

His stoma was well constructed and he has never had a problem and not one leak. No fiddling with pastes or adhesive rings etc etc to get a seal. So it is important that the stoma is well constructed and that, if possible, your stomach is flatish and to keep fit.

My brother seems OK with the bags. He has tried a variety and ended up using the two piece system as well.

So, have I done the right thing going for the J-Pouch? My brother just had the ileostomy stoma and that was the end of it. No complications, no drugs, he is fit as he ever has been and that is that.

Whereas I have opted for the J-Pouch and so that is not the end of it. One more operation, antibiotics, the risk of the J-Pouch not working, the worry that it is already getting inflamed before it is even connected. I will also have to watch what I eat and drink I guess rather like I did when I had UC.

But you know, I hate the bag thing. For me it has been a real fiddle at times and I get depressed about the look of it. I feel like a freak I am sorry to say.

The idea of being bag free, not having to worry about carrying spares everywhere I go, not having the potential for the bag to leak at any time and looking normal seems to me like a choice worth going for. From all the info I have read it seems that the J-Pouch is the "surgery of choice" for people who have UC.

As for going back to a bag ileostomy should the J-Pouch fail then this should be considered, in my mind, as a disaster. It means more major operations and I am not sure that the small intestine will be as effective as it was before having a J-Pouch constructed as you lose a few critical feet of it which means the output is more fluid creating the chance leaking and more trips to the loo day and night.

There you are, my thoughts on the subject.

This message has been edited. Last edited by: Fenners,

One thing I forgot........

My sleep is much more disturbed with the pouch. Getting up twice a night is the norm, once a night is great, sleeping through happens less than once a year.

I dont remember my sleep being disturbed with my bag.

This is probably the biggest downside of the pouch in my opinion.

I truly sympathize with anyone trying to make this decision. I thought I would share a story from my past with you all. About a year after I had my pouch out, I realized that this story played a significant, if subconscious, part of my decision to get my pouch removed.

I grew up in a beach town and worked in the local gift shop. THere were about 20 high school students who worked there and we all became fairly well acquainted. When I was 15 a new girl joined the store; she was a year ahead of me and was easily the skinniest person I'd ever met. I assumed she was anorexic, as it was the time when that disease was first being publicized.

Over time I learned that she had Cystic Fibrosis. By the time she was 16 years old she had had 2 heart attacks, had her lungs collapse in various combination 6 times, was trying to get up to 88lb in time for graduation (she weighed 75lbs when I met her) and had to have respiratory therapy several times a week.

When she turned 17 her drs told her she had 1, maybe 2 years to live but that if she had a feeding tube put in, it would give her an extra year. Her parents were pushing hard for her to have it. She told them if they forced her to have it, she would rip it out herself on the day she turned 18.

See, a feeding tube would have meant restricting her already restricted life even more. She would have been forbidden from rollerblading and other activities that she enjoyed and would have been tied to her house and family in a way no teenager wants to be. She chose a shorter life, but it was the kind of life she wanted to live. To her, an extra year meant nothing if she couldn't get out and be normal in the little time she had.

In the end, she lived to be 21, without a feeding tube and then passed away. I have always been in awe of the courage it took for her to make the choices she made and I honestly didn't understand it until after my pouch came out. Though I wasn't choosing life or death like she was, I was choosing to live on my terms.

When I got to the point with my pouch that I was spending as much time dealing with it, working around it, talking about it as I was spending doing things I enjoyed, I realized that was enough for me. And, once I hit that point, I was willing to accept any of the possible complications of pouch removal, just for the chance of feeling better.

In the end, it was definitely the right choice for me and I couldn't be happier. One day I remembered my friend and a whole lot of things clicked into place for me. I'm grateful for having met her and for the lessons she taught me, though at the time I had no idea the impact any of it would have on my life.

Anyway, I wish you all luck in your decisions.

Jill, your 2nd last paragraph is right on. I have a loop ileo for now, had an end ileo before. I could for the takedown anytime but I am fine for now with ostomy. The reason is that I don't concentrate on the ostomy on my day to day life. The pouch in my opinion may be more demanding on your life in some cases, but a very good working pouch is better then a good working ostomy. That is why personally I would not fight a bad working pouch more then a month, would just go back to an ostomy. To me feeling great and not being on drugs is more important then not having a bag and I am just 23. If you are running to the bathroom all day, do cosmetic issues really matter? You have to be warned that an ostomy doesn't work great for everyone. The thing with the pouch at the end its like playing poker, you take the risk with a good hand and hope to have some luck along the way. With the ostomy if you don't mind the bag you are starting with a stronger hand.... thats my analogy

I had my end ileostomy for 16 years before I decided to try the j-pouch.

Having an ileostomy from tbe age of 14 has been a challenge. I tolerated the leaks and accidents and daily soiling of my clothes for too long. 10 years ago surgeons refused to operate on me due to my history with crohns. 2 years ago I stumbled upon a surgeon that explained the risks and waited for me to make the decision.

Now I am 11 days post-op 1st stage.

Some people get on with their ileostomies, some don't. I would prefer to wake in the night to empty my bowels in to the toilet that wake in a pool of poo and change the bed clothes not to mention disrupt my wife in this way - its very degrading.

I am only 13 and have an ileostomy. I have gained 12 pounds already adn it's been a month!! I go to school and no one notices, except for my friends whom i have told. They don't say anything bad about it everyone is just happy i'm finally going to stay at school! i was sick on and off since grade 6, and now I am in grade eight. I have had colitis/ crohns for as long as I can remember. Doctors aren't sure which one i have,, since the colon was so badly 'trashed' they called it I thought I was lactose intolorant my whole life before, and now I"M NOT!!! That is probably what I am most excited about. I have to say, at the beginning it is very hard. You have more....gas....and output and you'll be worried about sleeping and you have to find the right bag and you have to discover your wear time.YOu also have to get used to looking at it :P But it is an incredible feeling knowing you won't get sick anymore as long as you have an ileostomy!! I went skiing and am going this weekend! It's just fantastic and I have no worries of falling or hurting it. I have no feeling on my stoma.
And if you have colitis you can get a j pouch after the ileostomy, they do not know which I have so I will wait until it has been a long time without symptoms and the doctors give the 'ok' but really, I don't really care!! I"M LIVIN IT UP!! THEY EVEN HAVE A CAMP FOR KIDS LIKE ME WITH STOMA'S!!
My recomendation is to get it out
get the colon OUT!!

OH and I sleep WONDERFULLY!! WAYYY BETTER THAN BEFORE!! I dont have to get up and empty at all ever and if you are waking up in poo piles, you might want to try using a paste or different pounch to increase wear time. I use a paste and now, I never leak and skin breakdown is minimal. Just some advice...

Hate to mention this, but it is a huge factor for me...if you are in the US, you must consider whether you will have good insurance...Medicaid will not cover the good quality pouches nor any of the good adhesives, etc that you need to be comfortable. They also will not cover the number that you need...

Do most of you have insurance that covers the ileostomy supplies? I cannot believe hos expensive they are (the good ones)

I`ve had a jpouch for 7 years now.If I would have known then what I know now...I L E O S T O M Y all the way!

I'm using my J-pouch for 7 months and love every moment.
I go 3-4 times a day and sleep through the night.

I had no complications with the stoma either , but I prefer the J-Pouch for sure.
I'ts like comparing ferrari (good functional J-Pouch) and subaru 93 (stoma).
of caurse If I'll have to return to the stoma I'll welcome it.

Not everyone has problems with a j-pouch. I am still adapting to mine but each day gets better and better. I never really managed well with the temporary ileostomy and I to be frank, I am not sure how I would cope with a permanent one.

I LOVE my j-pouch and feel pretty much normal. right now my main issue is I often feel like I gotta go, but I can hold it easily and tend to just poo when I need to pee anyway. So my bathroom trips aren't terribly excessive.

In my case, I decided on the j-pouch for the sake of normality and not needing to depend medications or medical appliances. No one ever mentions how ridiculously expensive ostomy products are. I mean, a box of Eakin seals, basically Silly Putty, is over $200 pre-insurance. I really don't get that.

I hated everything about dealing with that bag and three after take down my skin under where the wafer adhesive was is STILL red and irritated.

Meesh62

Remember most of us who choose an ileo do so because we DON'T have good j-pouch experiences. So, its not as if the majority of us are saying "hey, I'll just take the bag instead."

As for the insurance costs and what you "need" you will find that it varies widely. I'm a pretty low maintenance girl, so I don't use a lot of stuff - just wafers, pouches, eakins. That's it, no wipes, removers, sprays, etc...My insurance covers everything. I have a monthly limit but I've never come any where close to it. My supplier calls me 1-2 months before I need to reorder based on what my insurance will cover.

I change every 3-4 days. Rarely have issues so don't often use extras. So, 10 full changes a month and my insurance covers 30.

Some day I may need to pay for my supplies, but frankly it will be less than I was paying in drug co-pays, metamucil wafers and other stuff to "manage" my j-pouch.

Bumping this to the very top for April....who is 17. I like the first 3,4, and 5 responses especially about this topic she has for. I didn't read all the first nor the second page. Just found those responses to be good.

As others have said, you won't know how the pouch works for you until you try it.

My first go around with it I was only on it for about 9 months before they found out I had a fistula and put me on a temp ileo. Spent 2 years trying to fix it. Looking back from where I am right now, was not so bad. The placement of my stoma was not good because it was an emergency surgey. It also took a while for my skin to level out and the stoma to be in a good position (facing out, not down).

I'm back on the pouch now for 4 months and am getting real depressed. I am going about 15 times a day, experience urgency, and I don't sleep much. I go to work, and I spend a lot of time in the bathroom. By the end of the day I am pretty sore. I don't like to go places. I sleep in the living room on the couch, floor, or lazy boy, wherever I can find a position that reduces urgency. I sleep there because I don't want to keep my wife up with my many times getting up and down, she has to stay home with our 3 young children, she needs her sleep.

I'm giving the pouch one year, and if things are not better, then I'll go to ostomy. I'd rather deal with the occasional leak then be a zombie with a sore butt all the time.

Even with all that, I'd recommend trying the j-pouch first.