J-pouch vs. Ileostomy life questions

Hello everyone.

So I guess the best way to start is with a little background information. I'm a 21 year old college student and for the past two years my left-sided UC has been in a heavy flare. I was diagnosed at 16 so I knew how to handle living with the disease but this last flare has been by far the worst one I have ever had. After steroids, remicade, imuran, probiotics, asacol, colazal, rowasa, and hospitalization all failed to get me back into remission my doctor and I decided it's time for me to consider surgery. Mentally I'm fine with this. I'm tired of sitting around and waiting for my life to begin. I'm tired of not being able to sit through an hour class, I'm tired of seeing my friends go out on the weekends while I sit in, blah, blah, blah. What I'm here for is for no b.s. information on typical life for people with an ileostomy and the j-pouch. Specifically some questions I have, but also anything you feel may be important for anyone facing this decision to know.

1. Sleeping: Right now I wake up 2-4 times a night to use the bathroom. How often do you wake up to empty your pouch/bag? I'm a stomach sleeper so for those of you who were like me, how hard did you find the transition to a new sleeping positions (if you had to at all)?

2. Number of times you empty the pouch/bag: Specifically how do manage on road trips/ sitting long periods of time in a business/classroom environment? What's the average amount you go on a good day vs. a bad day?

3. Restrictions on diet: While I am diagnosed with UC it is possible I have crohn's disease since both my brother and father have it. However I will go with what I know and assume I have UC. So for those who just had UC, what dietary restrictions have you noticed with both the bag and pouch? How does dairy fair with you? Can you consume alcohol? How well does rougher food (specifically vegetables) pass? Are there any restrictions on spicy or "heavy" foods such as fried foods? How do these restrictions (if any) affect the amount you have to go?

4. Physical limitations: I don't play tackle football but I used to box and fence. I've made my peace with not being able to do either of these but how does running, dancing, lifting weights, going on roller coasters, swimming and riding a bike go for you?

5. Recovery time: I've decided to try to take this first half of the summer off to deal with the surgery (or at least the first part) and try to take a summer class starting in late June. How long was it before you felt able to return to work/ class/ resume normal activities?

6. Going out in public: How do you feel mentally going out in public? I know it's way better than dealing with UC but for those times when it is not ideal. Are you able to get up and go somewhere in the morning without much prep time? How fast are you able to get up and go somewhere (assuming yo do not have to change your appliance for those with the ileo)? How does having a full pouch in public go over when there are no bathrooms immediately available. Same for ostomys. Finally, if you've been up for a while and want to go out, do you make any special considerations about trying to go before leaving or do you feel comfortable enough to leave when you want?

7.Clothing: How, if at all, did you have to alter your clothing choices? For men, when you were suits or a tux, how did you manage that? Do tighter pants such as jeans (as compared to loose clothes such as sweats) go over as they did before?

8. J-pouchers: How did you feel about going through multiple surgeries? In aggregate, how much time did you spend recovering? How long was recovery following your takedown and when did you feel able to return to work/school/ etc.? How was the "learning curve", so to speak, when learning to manage your new pouch? How long did it take for you to get to the ideal amount of emptyings per day (4-6 or 5-10, whichever)? Silly question but do you feel comfortable enough riding a bike for more than 20 minutes?

9. For anyone who had or has an ileostomy: How often do you change the bag? What would you say the average monthly cost is for your supplies? I have insurance but it is through my dad and when I graduate in a year I may be without insurance for a while. How high is your monthly costs to the best of your knowledge without coverage? (FYI I live in America so no universal plan helping me) How long was your learning curve with regards to finding out when you had to change bags?

I just want to thank all of you in advance for any information. I've only been able to talk to 1 person with a J-pouch and 2 with an ileo so I'm looking for a larger sample with which I can make a more informed decision. Please, I want to know about both the best day you have with your pouch/bag and the worst. I'd like to know the extremes as well as the typical day.

Hi, my daughter who is 15 years old had just had her takedown surgery. I hope I can answer some of your questions. She had her first surgery of a two step surgey February 7. Right now she is home schooled cause she was to sick to go to school. After surgery that night so was so happy that her stomach didn't hurt anymore. Maybe 2 weeks and she had no more pain. I will be honest at first it was hard for her with the bag. The doctor told me to get her out of the house. I think after she got out and see she could eat and go shopping and empty it while being out was no big deal she was okay with it. Wasn't thrilled with it but it gave her life back to go out and do things that she couldn't do before. The only restrictions she had was no nuts, no corn no raw vegetables. Really can't remember. Also sleeping at first I think she was carefuly sleeping and then she sleeping all over the place. She got up at least once maybe twice to empty. She had a two piece so if she needed she just changed the bag. After a few changes it really didn't take that long to change it. Also she only had hers for 8 weeks. She wore her jeans and shirts you couldn't really tell. I could cause I knew it was their. So she is just six days for her j-pouch right now she has no pain and wants to go out. Of course I won't let her. Hope I helped some

Hello and welcome!

I will try to answer your questions! For background, I have/had Crohn's Colitis (15% chance it was UC) and now have a permanent ileo. I opted out of the j-pouch option becuase I was just sick to death of diarrhea and didn't want any more complications.

1. sleeping: I wake up about every two hours to go pee anyway, so I just empty then. I'm not normal though...most people wake up once a night to empty.

2. The emptying really isn't a big deal. I don't count, but again, I pee a lot...I wear a mini-pouch because I like those better; I'm kind of a small girl, so it just works better. Because I wear the mini, I empty more often than most, but I empty usually like every other time I pee. Most people empty about 4-6 times a day. And it's really NO big deal sitting through class or whatever. I am a teacher and can go usually from 7-noon without needing to empty. And even if you do have to, it's NOT a big deal. I can empty and be done in a shorter time than someone changing a tampon (weird comparison but one time I timed it with a friend, and it's good to illustrate just how little time it takes). Most of the time if I'm in the bathroom with a girlfriend and she's just peeing she doesn't even know I've emptied becuase it takes so little time.

3. There are a few food restrictions. There are certain foods that cause different output--some make you gassy, cause diarrhea, cause constipation, may cause a blockage, make your ourput smell, change the color, etc. Many of these are different for everyone, but overall I can eat MUCH more than I could eat when I had Crohn's. You have to be careful with high-fiber things like veggies and nuts and junk, because they can cause a blockage, but if you chew like crazy you're usually ok. You'll find what works for you. I have no problem with dairy. Alcohol makes my output watery but no biggie...at least I can drink without being in the bathroom with diarrhea for the next 12 hours!

4. Physical limitations: There arent' many. As for contact things like fencing or boxing, I don't think fencing would be a problem. They make a stoma guard you can wear under your clothes that no one can see and it protects your stoma. I dance at Disney World for my job and had no problems.

5. I was able to return to work in 5 weeks. And that was dancing. If I had a desk job it would have been sooner. If I had not been so sick before the surgery I would have been able to sooner too. The main thing that took long to recover from was having my rectum removed.

6. Going out is GREAT! Now that I don't have diarrhea all the time, I love it! I can get up and leave whenever I want. Same as any normal person. Even if I change my appliance in the morning, it's like 15 extra minutes. No big deal. With Crohn's I had to get up THREE hours before I left. Now I can leave the second I get up if I want! I don't worry about finding bathrooms. You have plenty of notice when you need to empty your pouch, so it's really not a concern.

7. Didn't have to alter my clothes much. once the swelling goes down after surgery you can wear most of what you wore before. Some of my lower-rise pants or shorts I had to get rid of, but for the most part I can still wear all of my old clothes.

9. I change my whole appliance every 4 days, usually. I can go longer but don't like to chance it. Plus the pouch gets really gross after that amount of time and I just like to have a new one. The supplies are pretty expensive...like $50 for a thing of 5 wafers, and something similar for the pouches. So each pouching system with all supplies is probably like $15 or maybe more. But if you empty like every 4 days, then it's like $!1-$200/ month...you should probably try to get insurance through cobra or something like that.

 As for my best and worst days...my best days are honestly most days. I feel totally normal, I can do everything my friends do, and I don't worry about the diarrhea striking when I least expect it. It's such a blessing. My worst days...I mean, there aren't many. This isn't like having IBD. You just live and dont' think about good and bad days. My bad days are probably the ones where I had an obstruction or where I had an infection under my wafer and was very itchy or was trying to treat the infection and had to change the wafer all the time. Once you find the pouching system that works for you, yhou'll rarely have a leak. I've had like 5 or 6 in the 13 months I've had my ostomy, but 90% of those were when I was using the wrong system. Just always keep an extra pouch with you and you're fine.

Hope that helps!! This site literally changed my life, talking me into getting an ostomy and helping me have a good attitude about it. It has made all the difference.

I haven't had my temp ileo for J-pouch very long, just 4 weeks, but I had a colostomy for 6 months before hand. I'm not going to reiterate the same things about sleeping and limitations and what not. Just had a few other things to add.

As far as hiding the bag under clothes, I'm a girl so it may be a bit different, but typically an undershirt does the trick. Obviously you as a guy aren't going to go get high underwear to cover it ;) But I wear a cami type undershirt under everything and poof, invisible bag. But my stoma is sited high, so typically your pants will cover it and seriously no one can ever tell. I've told people I have the colostomy and you can see them look over my stomach and then they ask where?? I point to the spot and they are always astonished that they can't see it. My temp ileo was pulled through the same site so I'm doing everything the same.

All good points about food so far. J-pouchers can typically eat anything. General rule being for 3 months stay away from seeds, nuts, and fibrous things like fresh veggies and some fruits like pineapple. then you introduce them slowly. Most Jpouchers find that they can eat anything where as most ileos, may have some restrictions still like corn and the like. Blockages are no joke and are much more common with an ileo because of the small tube being surrounded by rigid muscles instead of squishy insides. :) Blockages can happen with Jpouches but are rarer, often being caused by adhesions. And alcohol is a-ok, but goes right through you with an ileo and imagine also with a jpouch, so just drink where there is a clean restroom.

when you finish school in a year do NOT go without insurance!!! You will screw yourself for life if you have a break in coverage. Ileos and jpouchs are considered pre-existing conditions and will stick with you forever. Your future insurance costs will be sky high if there's a break in coverage. Get COBRA, a job with insurance or find out if your state as a program like mine (Ohio) where though HIPPA law where all the insurance companies are required to offer a standard plan to all people without regard to anything other than sex, age, zipcode and whether or not you smoke. Supplies are expensive no doubt and some insurances (quite criminally in my opinion) don't cover them. The ones I get are $100 for 10 wafers and $150 for 20 bags. If, heaven forbid you get a perm ileo and don't get insurance after your parent's coverage lapses on you, there are foundations that supply ostomy supplies for cheap for people without insurance and free to those in extreme need.

The time for recovery depends on your health going into. I was super sick for my colostomy so I took the full 8 weeks. I'm 4 weeks out of my temp ileo for my Jpouch and I still am not allowed to drive yet. My dr said 4 weeks after I get out of the hospital so one more week, but I know others drove earlier. I could, but I'm following my orders :) Frankly, I'm bored outta my skull and want to go back to work even though I hate my job. But I stand all day at my job and my first surgery weakened my hips and this last one brought out the pain again so it'll be half days for me and not for 2 more weeks. Physically I feel fine, I just get worn out pretty easy. I think you'd be fine to go back to classes though in 4-5 weeks tops. I mean look at 80schick going back to work as a dancer in 5 weeks. Just remember that you may take longer to heal, but for plain old, class I wouldn't worry about it.

I'd say the learning curve for me was untypically long. My stoma is placed near a dip in my belly and that caused a lot of problems so it took me 5 weeks to get it all sorted. I also had some skin allergies and a adverse reaction to convex wafers that was funky to deal with too. My temp ileo has been a trial as well for the same reasons and some skin irritation, but you'll be sited in a better spot regardless so hopefully that won't be an issue for you.

You may want to post this over at Jpouch.org too, obviously no one there has a perm ileo but they can give you other insights! Just don't get freaked out by all the AHHH posts with problems. You mostly only see the people with issues online, the people that are doing well are out living. Jpouch has a 90% success rate, and thems good odds! :D

I applaud you for going ahead with surgery! I was diagnosed with UC at 22 and almost didn't graduate college because of being in and out of the hospital and almost died 3 times before surgery was forced on me because of C-diff perforating my colon. I lost my early twenties to the disease and now at 26 am kicking myself for not doing this all earlier. You are going to feel soooooo much better!! No matter which you choose Good Luck to you!!

You have asked a lot of great questions! It's clear that you are really thinking this through to make the best choice you can. I can only answer some of these based on where I am right now. I was diagnosed with UC in Feb. 2008 and have currently had Step 1 of 3 for j-pouch surgery. Right now I have had my colon removed and have a temporary ileostomy. My surgery was three weeks ago as of yesterday. Now to answer what I can....

1. Sleeping: Right now I wake up 2-4 times a night to use the bathroom. How often do you wake up to empty your pouch/bag? I'm a stomach sleeper so for those of you who were like me, how hard did you find the transition to a new sleeping positions (if you had to at all)?

I either wake up once to empty or not at all depending on how long I sleep. Six hours seems to be the time frame for me right now. I have no trouble going back to sleep, so I just empty it and go back to bed. Last night I actually slept 8 hours and the bag was sort of full but not dangerously so.

2. Number of times you empty the pouch/bag: Specifically how do manage on road trips/ sitting long periods of time in a business/classroom environment? What's the average amount you go on a good day vs. a bad day?

Right now the need to empty the pouch never outpaces my need to go to the bathroom to go pee. I pretty much empty every time I go to the bathroom just because I'm already there and I might as well. I was having to track my output for my doctor for the first two weeks and based on that I empty about 5 or 6 times per 24 hrs. I tend to have a lower amount of output than average though.

3. Restrictions on diet: While I am diagnosed with UC it is possible I have crohn's disease since both my brother and father have it. However I will go with what I know and assume I have UC. So for those who just had UC, what dietary restrictions have you noticed with both the bag and pouch? How does dairy fair with you? Can you consume alcohol? How well does rougher food (specifically vegetables) pass? Are there any restrictions on spicy or "heavy" foods such as fried foods? How do these restrictions (if any) affect the amount you have to go?

You know, I had a grandmother with Crohn's and my half-sister has it, too...but we were confident in my UC diagnosis. Just putting that out there to let you know it happens. Anyway...aside from when I put myself on diets (like SCD) I really had no restrictions with UC except for corn, popcorn, and taking it easy on nuts/seeds. Since my ileo is new, I am still on the soft foods diet. I am not supposed to eat raw fruits and veggies, etc. I do not have any problems with dairy, but I never have. I am allowed to have moderate amounts of alcohol, but haven't tried it yet. So far it seems what I drink has more influence on the amount of output than anything (more fluids with meals = slightly more in the bag later).

4. Physical limitations: I don't play tackle football but I used to box and fence. I've made my peace with not being able to do either of these but how does running, dancing, lifting weights, going on roller coasters, swimming and riding a bike go for you?

I am not doing a lot of this kind of stuff yet because I'm only 3 weeks out from surgery. I am walking up to a half hour on my treadmill without any issues. I am looking forward to getting back to running, but I think they won't release me for that until I'm 3 months out. Based on what others have shared, I expect to be able to do anything that I was able to do before surgery once I'm healed enough and have the energy for it.

5. Recovery time: I've decided to try to take this first half of the summer off to deal with the surgery (or at least the first part) and try to take a summer class starting in late June. How long was it before you felt able to return to work/ class/ resume normal activities?

Right now, at 3 weeks, I would be comfortable taking a class if I wanted to. Going back to work would depend on what I did, but my former job (I'm a stay at home mom now) was an office/desk job and I think I would be ok to do that right now on a half time basis or full time in another week or so.

6. Going out in public: How do you feel mentally going out in public? I know it's way better than dealing with UC but for those times when it is not ideal. Are you able to get up and go somewhere in the morning without much prep time? How fast are you able to get up and go somewhere (assuming yo do not have to change your appliance for those with the ileo)? How does having a full pouch in public go over when there are no bathrooms immediately available. Same for ostomys. Finally, if you've been up for a while and want to go out, do you make any special considerations about trying to go before leaving or do you feel comfortable enough to leave when you want?

I feel fine about going out in public. I don't feel like people can tell I have the ostomy and I don't find myself worrying about it. To go somewhere in the morning it would take my normal getting ready time plus maybe 5 minutes where I would use the bathroom right before leaving and make sure my pouch was empty. I really don't worry about not having a bathroom available for emptying when I'm out. I can easily go 3-4 hours before it's even needed, and even then it's not something that has to happen right then and there. It's more like realizing it's getting kind of full and then knowing sometime in the next 30-45 minutes I should find a bathroom and take care of it. If I've been up for awhile and want to go somewhere, I just make a quick stop in the bathroom first to empty and then I'm ready to head out the door.

7.Clothing: How, if at all, did you have to alter your clothing choices? For men, when you were suits or a tux, how did you manage that? Do tighter pants such as jeans (as compared to loose clothes such as sweats) go over as they did before?

I can't answer this well yet. I still can't wear my jeans and regular pants but it's due to tenderness in the incision, nothing to do with the ostomy. I did try on a pair of my jeans and they will be fine once I'm healed up. As a female, I can't answer your question about the suit/tux thing.

8. J-pouchers: How did you feel about going through multiple surgeries? In aggregate, how much time did you spend recovering? How long was recovery following your takedown and when did you feel able to return to work/school/ etc.? How was the "learning curve", so to speak, when learning to manage your new pouch? How long did it take for you to get to the ideal amount of emptyings per day (4-6 or 5-10, whichever)? Silly question but do you feel comfortable enough riding a bike for more than 20 minutes?

I obviously haven't been through this part of it yet, but the one thing I wanted to mention was something I had to consider when making my decision on perm ostomy vs j-pouch. I had to ask myself if I was willing to go through multiple surgeries and recoveries knowing there is a small possibility that the pouch wouldn't work out in the future and I would end up with a permanent ostomy anyway. After lots of reading and learning how small a chance it truly is, I decided I was comfortable going for the j-pouch and giving it a try.

9. For anyone who had or has an ileostomy: How often do you change the bag? What would you say the average monthly cost is for your supplies? I have insurance but it is through my dad and when I graduate in a year I may be without insurance for a while. How high is your monthly costs to the best of your knowledge without coverage? (FYI I live in America so no universal plan helping me) How long was your learning curve with regards to finding out when you had to change bags?

I change my bag twice a week right now (every 4 days or so). I could probably go longer in between as it's not like it's about to fall off or anything when I do it, but I don't really feel comfortable waiting longer than that right now. I'm still learning how to efficiently do the changes, so I like getting the practice. Plus I like being able to check on my skin under the wafer more often. I have made one supply order to date. It really was enough stuff for two months (20 bags, 20 wafers, accessories, etc.) and before insurance it was about $700. I paid $50 for my portion. There were a lot of things in there that wouldn't be needed every month though like stoma powder, an ostomy belt, etc. so it won't cost that much each time. Fortunately my insurance allows 20 pouches/wafers per month rather than 10 so I went ahead and got them. Now I don't have to worry if something happens and a change only lasts a few hours (this happened to me the other day...user error!) As for the learning curve, I spent a week in the hospital and got two lessons from ET nurses while there. Once home, I had a home health nurse who made two visits to help with changes and a third where she watched me do it and then I was comfortable doing it myself. I think it takes me about 20 minutes (haven't really timed it though) but most of that time is me being squeamish while pulling the old pouch off because part of the wafer is over my incision and it still freaks me out. Once that is healed completely, I think it will be a lot easier.

I had my j-pouch reversal last Monday and I am already feeling good. Yesterday I went to costco and then lunch with a friend. I didn't have to go while we were out and felt "normal" for the first time in a very long time. I am just about to go outside to garden that's how good I feel! I was just like byebyeuc...I really never liked having the bag and never felt normal. I would get used to it, I am sure, but not having anything on my stomach anymore is heaven. Already I only get up once to go, but that's at 5:00 am usually so it's not like it's the middle of the night. And this is only a week and a couple days since surgery!

Good luck to you. I think a lot of people know right away what they want so I sm sure this is a hard decision for you. I knew the success/satisfaction rates at the Cleveland Clinic where I had surgery and I was sold.

I'm a lil confused is the j pouch made frm org or sml intestine ?? Cuz if I have pan colitis don't they need to take the whole large colon out? Then the j pouch is made frm my sml intestine then connected to my rectum??

A lot of good advice above...I just want to say best of luck to you!

Hullo! I am also a college student (22 year old female) who has UC. I became septic because I was so sick in January and they had to do an emergency colectomy on me. I've had an ileostomy and ileostomy bag since early January, so I can tell you something about it. I also have decided to go for the J-pouch and just had the 2nd of 3 surgeries (I had the j-pouch construction and loop ileostomy last week). If you are healthy you will have 2 surgeries, one where they do a colectomy, j-pouch construction and loop ileostomy, and another where you get the take-down and they close the stoma. Your experience with surgeries will differ from others, but I figure I would share what I have gone through. It is very easy to get used to the ileostomy, but I still want to be as "normal" as possible and do the j-pouch! :)


1. Sleeping: I have the small bag and depending on how much gassy food I eat, I empty it 1-2 times per night. I am not on immodium or anything, so it might be none if I was on it. With the large bag, I don't have to empty at night.

2. Number of times you empty the pouch/bag: I make sure to empty my bag before going anywhere for a long period of time. I was recently on an 11 hour bus ride and while I didn't NEED to empty it, I did empty once when we stopped for food. I'd say I empty it 4-6 times a day, but I never wait until it is full.

3. Restrictions on diet: At first you start with soft foods, but holy crap life with an ileostomy has been SO MUCH BETTER than life with UC. I used to not be able to eat oatmeal or orange juice or citrus fruits or a lot of things, but now I can eat pretty much anything. You just need to watch out for food that might cause obstruction, such as celery. If I want celery I make sure to cut it up really small so it does not cause a blockage of the stoma.

4. Physical limitations: A month after I got my stoma I went to Florida and was swimming every day. You should invest in "stoma armor" if you want to play heavy duty contact sports, but you can do literally anything. You can scuba dive, rollerblade, ice skate, whatever you want! No limitations, my friend. Just make sure to dry off your wafer after swimming because prolonged wetness can cause the adhesive to peel off.

5. Recovery time: It took me about a month to feel normal after my surgery, but I had an emergency surgery and was deathly ill for about 2 months prior. I just had my second surgery and I am recovering much faster from this one. Make sure you take your time and allow yourself to heal, because you don't want to hurt yourself.

6. Going out in public: When I go out, depending on how long I'll be gone I will usually just bring an extra ileostomy bag and wafer in case of accidents. I can pretty much go anywhere I want, though things like hiking or long bike rides might need special consideration since there are no bathrooms. I have not had an instance where my bag was full and I was unable to go to the bathroom yet, but it is possible. Just make sure that there is going to be a bathroom around in case of an emergency. It's the same as when you have UC.

7.Clothing: I had to wear loose fitting pants for a few weeks after my surgery, but now I can wear anything! I bought an ostomy wrap similar to this one (http://www.ostomyshop.com/proddetail.php?prod=ClassicWrapTan&cat=9), which keeps the bag close to my body and streamlines everything. Tight jeans can be annoying if you are wearing them for a while and can't empty your bag, since it kind of squishes it.

8. J-pouchers: Multiple surgeries is HARD. I won't lie to you. I have to have 3 surgeries because I was really sick when I got the first one, so my opinion may be biased, but it hurt and it sucked for a few weeks. I'm going to guess that it will take me a total of 8 weeks to recover from all 3. It will obviously be shorter for those who get 2 surgeries. I can't answer the rest of your questions because I haven't had my takedown yet!

9. For anyone who had or has an ileostomy: I change my bag between once a week and twice a week. You can tell when you need to change it, the adhesive might start to peel and the bag loses its integrity. You will have an ostomy nurse after surgery who will check on you a few times a week for a while and make sure you get the hang of it. Depending on your supplier, it might be fully covered or you may have to pay a bit. I think my first supply of bags, wafers and stomadhesive cost about $30? Maybe more. It's not so bad.

I think it's cancer in the rectum or anus that's the risk. I think others here know more and can clarify further.

Yes, I was told that my rectum was removed and the cuff striped. Thanks Sue. That makes me feel much better.

Thanks Ron. My surgeon did say she removed the entire colon and the rectum because I was concerned that the uc might come back. She said there was no chance of that because there is n colon or rectum. I have an appt over the phone with her so I'll ask her again.

HoustonGuy- you are right. Surgery will help you get your life back. I had my permanent ileostomy in November due to UC. Today I was in a meeting at work, and towards the end, someone spontaneously suggested taking a hike to a site to check out something we had been discussing (I am a park naturalist). We all got up from the table, drove to the trailhead and took a 1.5 hour walk. Not once, before or during the excursion, did I have to think about using the restroom. It was awesome!