Hello everyone, I am sure this has been discussed many times but im doing some research for myself.

I am a 30 years old male and have had colitis for 7 years. In the past I was controlled on azathioprine and pentasa but over the last few years I have had quite a few flare ups which seem to be more and more resistant to streoids. I am also on a high doses of aziathioprine which has resulted in me getting warts on hands and feet and just can't get rid of them.

I am starting to consider surgery because it will mean the end of these drugs and it may be something I have to do anyway in the future.

However I dont understand why everyone goes for the jpouch? It seems to me you still have frequent bowel movements and can get pouchitis and a high chance the bag fails eventually anyway.

With an Ileostomy what else is there to it other than emptying a bag every so often. You can live a normal life as long as you take care of it? Is there something im missing and I guess the biggest concern id have with the bag is whether my future partner (single at the moment) would have a problem with it?

any input much appreciated.

I have to say I am very interested in what response you get to your question. I had the first step surgery with the temp ileostomy in Feb. The plan was for me to have the take down 6 weeks post op but the x-ray showed I had a leak. I will be going for another x-ray in a week or so and then can procede with surgery if is ok. I have had some signicifant issues with skin problems around the stoma but other than that I am really starting to feel great. Instead of being excited for the take down, I am getting nervous about it as it seems like life is going to be so much more difficult having to deal with frequency, pouchitis, etc as you have mentioned. So I guess I am asking the same question-is quality of life better or worse after take down? Good luck in your decision-it is smart of you to be researching now and getting as much information as you can so you can make an informed decision. Take Care!

Neither option is without its issues. I think most people, particularly younger people, go for the j-pouch due to body image issues.

I had a j-pouch that failed and have had a perm ileo since 2001 (when I was 30) and had my pouch removed in 2003. Since then my life has been back to normal and I'm quite happy.

Here's the thing. When the j-pouch works, it is great. There is no way to know if you will have good luck with it or not. Then, you need to consider what you would consider problematic. Most people don't find frequent bathroom trips with a j-pouch to be a problem because when things are working, there isn't an urgency or pain issue. Some people can treat pouchitis with one course of antibiotics and be done with it, others need long term antibiotics, but that doesn't bother them. Its a matter of personal choices.

Ileostomy surgery would be less complicated and you are right, you can live a very normal life with an ileo (I've been hiking, kayaking, traveling, had one baby and am pregnant with my second). But, you could end emptying the bag as often as you'd be emptying the j-pouch. You could end up with skin issues with the ostomy, sometimes easily fixed, but sometimes people have very bad issues that take a long time to fix, if ever.

For me, the advantage of the ostomy is taht my j-pouch kept me on drugs, restricted my diet, had me in pain, made it so I couldn't sleep through the night, etc...not much better than UC for me. Ostomy eliminated all of those issues.

I think the conventional thinking is try the j-pouch, if it doesn't work you can always go back to an ostomy. However, I believe there is nothing wrong with deciding you want the ostomy and being done iwth it, especially if you want less surgery. But you need to be sure that's what you want. Maybe you should consider having a 3 step surgery. Then you would get an ostomy in step one, get to see how you like it, then you can decide to go to step 2 for j-pouch formation or not.

I can only speak for myself, but I have an ileostomy now, and I don't feel that dealing with it is easy, exactly. Emptying "every so often" is as many times a day as I went to the bathroom when I had UC, and (unlike some hardy souls here!) I am not quite up to emptying this thing outside a bathroom. So I do still need to know where the bathrooms are (albeit less urgently). (Granted, my ostomy is a loop and not an end; the latter is the kind you usually get with a permanent ileo, and it is reputed to be easier.)

I don't feel shame about the ileo (in fact I'm a bit proud of it in an Amazon-woman kind of way), but this is markedly less convenient than being able to poop through one's anus in a non-urgent way. I've got equipment to lug around and I need to have that stuff all the time--can't go even a few hours without it. (Not that I'd want to go back to having my particular colon, mind you, but it was possible to leave the house without the UC drugs, or be a few hours late taking them if I were out having fun). I feel less unhealthy, but if it's possible to feel less unhealthy and also not have to deal with that inconvenience and sense of restriction (and the associated cost, stigma, and body image changes), I'm willing to take a shot at it. I feel that a permanent ileostomy would be a great option if I had no other options, but I do have other options.

Your sense that there is a "high chance" that the j-pouch will fail is not accurate. You can measure what counts as "failure" in a bunch of different ways, but the number that seems to hold up best in the literature is that near term (five years later), 97.5% of patients report that their quality of life is at least "good". Here's one study:

http://www.annalsofsurgery.com/pt/re/annos/abstract.000...89!181195629!8091!-1

The long-term risks of needing the j-pouch removed are also very low (I think it's about 8% in most studies I've seen--maybe someone else can cite one of them).

Here's a calculator for the risk of pouch failure:

http://www.riskprediction.org.uk/index-ccfipf.php

Jan has said something on here about the difference between the j-pouch and the ileostomy as being like the difference between breastfeeding and bottle-feeding (in terms of associated hassles). I'd try breastfeeding first too.

Just wanted to add that not everyone with a pouch gets pouchitis. And, not everyone has issues. There are lots of pouchers who never even come to this site because things are good and they don't need a support system.

Also want to echo Charlotte's comment about loop vs end. My end ileo is a piece of cake, my loop was a nightmare. Much better appliance wear time and less frequency and better consistency with the end.

I breastfed my son for 5 months and then bottlefed (one bottle a day starting at 3 weeks, then all bottles at 5 months). Just to illustrate how people are different, I found bottle feeding much easier with my son than breastfeeding - especially as he got older. Could have been how my son breastfed - he didn't particularly like breastfeeding away from home, but the point is, each of us is going to feel differently about things which is why it needs to be YOUR choice what path you take. No one can or should make the choice for you.

I've never had an ostomy, so really have nothing to compare with. All I can say is that I am very grateful that the j-pouch was an option for me because I have very sensitive skin and react to adhesives. So, while I know that in the future, there is a risk that I may develop pouch failure and have to revert to an ostomy, I am very glad to all the years I have been able to avoid it. Life with a j-pouch is not perfect. But the truth is that there is no perfect surgical solution to UC.

Jan

I thought the ostomy was horrible!! If I had to have one I guess I would, like so many fine, brave folks here, make the best of it but my J-Pouch makes me about 95% normal. I have had no problems in 2+ years. Even the infamous "Butt-Burn" is now gone (blander diet did the trick). I have BMs down to 5 or 6 a day and only after meals (so I eat my first meal at noon each day) On the other hand, I did have the ostomy for the 30 days until takedown and I hated it I can't tell you how much. I am not terrible fascile with my hands and had a hard time changing bags. It spilled several times, smelled awful and the adhesive caused my skin to break out, more than break out, rot. I would have been afraid to swim or work or even travel far from home. God bless you guys who do better.

If you have a choice get a J-Pouch. Remember, you see more problem cases on the site as people dial up to ask for help. I have never had "pouchitis" or any problem, I work out and travel and lead a normal active life and I am 65. Go for the pouch!

My history is a little different. I was diagnosed with acute fulminating hemorragic UC. Six weeks later I perforated my bowel, had an emergency colectomey and illeostomy.
My surgeon was honest about 'quality of life'. Going to the bathroom 7-10 times per day did not sound like a good deal to me neither did a permanent ileostomy. I waited 3 years and went with the j-pouch. I have never regretted it. I use the bathroom around 5-8 times per day. I have had several problems but not j-pouch problems. I think the j-pouch has such a well documented strong success rate that it is an acceptable risk. As time goes on I think the techniques and medications will only improve.
The quality of life is great. Things are different, but my life as not been significantly impacted.
Jennifer

I have to go along with what everyone has been saying. Both options can have issues. I don't specifically have a J-pouch, mine is actually an S-pouch.

You say that you worry about pouch failure eventually and the other assoicated problems such as pouchitis, strictures, fistulas, etc. I can tell you from my experience that not everyone has the issues.

And I am speaking from a long term perspective. You see I had my pouch created in approximately 1982/1983 (so long ago I don't specifically remember the year anymore). And I have never had pouchitis, strictures, any kind of issue, that is almost 26 years of no problems, and I don't sense any impending problems either. I plan to live the rest of my life with my pouch, unless something unforeseen happens without any issues.

I did have an ileostomy for 6 months, and had issues with skin breakdown. But I don't see that as an issue. You see my mother has had an ileostomy for 32 years now. And she has never had one single issue with her ileostomy. So I have seen that there is good life on either side of this coin.

The main thing to remember is that this is a very personal decision that you need to make. What are you willing to live with?

You talk about not being sure how your future partner may accept an ileostomy. I have been married to my husband for almost 32 years now. He has seen me with and without an ileostomy. but that is not even an issue.

You see he accepts me just for the person I am, not the package that I am in. He has seen me model thin, he has seen me heavy, sick, healthy. But no matter what we have loved each other day in and day out, for the person inside, not the package. That is the love that we share.

Sorry if I have rambled on.....

Beth B

I chose to keep my temporary ileostomy for a full year after my first of two steps in the J-pouch surgery scheme of things. I did so because of scheduling (work related) and also because I finally felt great and had figured out the best system (for me) of wafers and products to use. I was able to have more than 7 days wear from my appliance! Anyway, my son convinced me to go ahead with the ileostomy takedown and give the J-pouch a try. If I didn't like it, I could always ask for a permanent ileostomy. Well, it is now over 5 years post takedown and I'm thrilled with my J-pouch. I rarely think of myself as different. Frequency isn't a problem and neither is urgency. I just go on leading a normal life. This was far from the case when I had ulcerative colitis. I have had a few cases of pouchitis and each time I have quickly responded to Flagyl. No more steroids, no meds for any digestive issues. I am very fortunate. I am also 67 years old!

thanks everyone for your responses. seems like there is no easy choice. I currently have a very demanding job but I enjoy it and wouldn't want to give it up. Do you find that with a J Pouch you could eventually go back to work as normal?

Hi Shainy, I had a one step surgery 5 years ago and had a great working jpouch. I had a great recovery and went back to work 3 weeks after surgery. I started part time and worked my way to full time. I work with my husband, so I was able to rest if I needed. It depends on what you do as far as the time frame of getting back to work. If you do any heavy lifting, it will take longer.

After 20 plus years of UC, my life was great. I was able to travel, walk on the beach, shop, etc. without worrying where the next bathroom was. I started slowly with food and within 6 months I was eating salads, fruits and pretty much anything I wanted. I stopped counting my bathroom trips because they didn't matter, there was no urgency, pain or bleeding.

I did have some problems, but they are pretty rare. My pouch prolapsed a little and a piece of my intestines fell down. Last year, I had corrective surgery and had a temporary ostomy. My surgeon wanted me to wait 6 months before reversing it to give things a chance to heal. I felt so good that I kept it 2 months longer. I was able to travel, swim and eat whatever I wanted. It took a few weeks to adjust and learn how to change and care for the ostomy, but after that I had no problems.

I just wanted to share with you that I have had both a jpouch and an ostomy, and I found life without UC is wonderful.

I don't regret having the jpouch, I think it's the best solution for most of us without a colon. BUT, I think the ostomy is also a good choice. If my jpouch fails, I know I will be able to handle life with an ostomy.

I know this is a hard decision for you, and the unknown is the scariest of all. Keep coming here and asking questions, the more knowledge you have, the better you will feel.

Good Luck,

janna

My situation was similar in that my colitis was refractory to treatment and therefore interfering with my (also demanding) job. I had a 2 step procedure and was back to work in 3 1/2 weeks after step 1, but limited my schedule somewhat for 2 to 3 more weeks. I'm now 4+ months out from 'take down' of my ileostomy and was back to a full schedule 2 weeks after that 2nd surgery. I've been able to work a regular schedule both with and without my ileostomy - either one has been much, much better than uncontrolled colitis.

In my opinion, a good result with a J pouch is better than an ileostomy - the problem is that you don't know how you will do ahead of time. All I can say is that the surgery has given me back my life and allowed me to function almost normally. Good luck whatever you decide!

Jeff

quote:

I think the conventional thinking is try the j-pouch, if it doesn't work you can always go back to an ostomy.

That is my thinking exactly. I've had an ileostomy since 2006 and I've lead a very normal life. I got engaged (god love my fiance for sticking with me through all this), I got my motorcycle license, I race sportbikes and I live just like I used to. Plus, you get to go to the bathroom WHEN YOU WANT TO. Not necessarily when you NEED to, unless your pouch feels particularly full. Also, there are drops you can use in your bag to eliminate odor, so if you go to work or school or just like to get out of the house, you don't have to worry about destroying public bathrooms.

Now I'll bee honest with you, it isn't always peaches and cream, or sunshine and lollipops, or whatever. I've accidentally sprung a leak on numerous occasions, let the bag slip from my fingers and end up "pooping" on myself in the bathroom, and I've had major problems with staying hydrated (which I'm still working on). Also, as a woman, I've ended up wearing a girdle daily (I'm only 25, and I still have a hard time admitting this), because it hides my bag completely. I know there are appliances and things you can wear to hide the bag, but I've found this works best for me. I don't think many guys would go this route to hide their bag though.

It all boils down to what you want to do. Most people end up giving the jpouch a try, because if it doesn't work, you can always go to a permanent ileostomy. I know for myself I would always wonder "what if?" if I didn't give it a try.

Good luck,

Sarah Bee

Both have pros and cons.

I had my ileostomy for 18 months and found it fine. I ran, drank beer, ate curries (didnt burn on the way out!), cycled and went out as normal. I was happy to be fit and healthy again. I changed my bag every morning and occasionally in the afternoon before a night out. The bag hardly casued me any problems and only leaked if I left it on for too long.

However, changing the bag each morning was a bit of a pain.

I also wondered what a pouch would be like so i had to try the pouch.

The pouch is good when it works but I have had more pouch problems than with my bag. I have also had more leaks with my pouch than my bag. I tend to get pouchitis every few years and normally a course of antibiotis cures it. I still run (1/2 marathon last year 1 hour 37 mins), mountain bike, climb, drink beer but only eat mild curries now.

After having my pouch for 8 1/2 years I would still stick with it, but if I had to go back to a bag I wouldnt be too upset.

I have 2 friends with pouches. Both hated and I mean really hated their ileostomies (a mental thing I am sure). One has hardly any problems with their pouch the other does have a few problems.

http://www.beardmorebros.co.uk/website%20pages/uc.htm for more details and pics.

John