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Hello all,

 

It's been a long time since I've posted here, but I'm wondering who else out there has had their pouch for over 10 years.  I've had mine for almost 18 now and I'm curious how other long-time pouchers are doing/feeling.

 

I must say, I've been better.  Have tons of gas even eating a low fodmap diet, strictures, I actually have to lay down on my right side to expel any gas because it doesn't expel otherwise, and it seems like I get pouchitis all the time.  Budesonide used to be what worked best, but I still find myself bleeding occasionally on it even after 4 weeks at 9mg.  Antibiotics only work for about two days and then I get diarrhea - and, most of them make me sick.  VSL is like a bomb.  Everything I used to do doesn't work any more and I'm feeling kinda scared.  I've heard out there before that pouches are only viable for about 20 years or so and then. . . ?  A re-do?  Live on antibiotics that make me sooooo sick? Sigh.  Thinking about seeing Dr. Shen - I've read good things about him.

 

Just checking to see what others who have had their pouch a long time are facing, if anything.  But I hope to hear that you all are doing great!  

 

Thanks so much for any info!

 

Hugs,

Tracey

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I don't do well on most antibiotics.  Xifaxin was the best, but it stops doing anything after 2 days.  Get tendonitis from Cipro (I also have Ankylosin Spondylitis) and have a myriad of issues with others.  I take Florator, which is saccharomyces boulardii and helps to not have c. diff. overgrowth while on antibiotics.  It's also used to treat c. diff.  I mostly try to manage with natural medicine, but the stuff that's supposed to help causes other issues.  I'm thinking the hyperbaric chamber might be interesting. . .

 

lablover, I'm so happy to hear your hubby is doing well - that's very encouraging for me.  I'm going to find a way to handle this, eventually.

Hi Tracey, I'm sorry things aren't better for you.  seeing dr Shen sounds like a good idea.  I'm coming up on 30 years with my pouch.  I've never heard of the  20 yr  time limit, lol.  I've never suffered from pouchitis, thank the lord.  I have had to deal with adhesions, tho.  I've had surgery to release them three times now, the last one was in 2008.  I am able to eat pretty much whatever I want.  Biggest change I've noticed is not needing to take as many "slowers" as I used to.  Back in the day i needed to take 10-15 Imodium a day. Now I can usually get by with one or two. 

Hi Tracey,

My pouch is 23 yrs. young and going strong. I've had one bout of pouchitis from using NSAIDS. Never used them again after that episode and never had further trouble. Use VSL#3 once daily and sometimes use Florastor because it has good yeast that aren't found in VSL. Minimizing sugar and maximizing fruits and veggies works well. Can eat anything except spinach, which pouch doesn't like. Do have some gas. Have never heard that pouches run out of steam after 20 years.

Rose

Hi Tracey

My k pouch (still a pouch just a different exit) is 35 yrs old and going strong.

There is no reason that a pouch should have an expiration date on it...it is still your own small bowel and is not made out of some man-made biodegradable material that falls apart after a certain time.

Sure your body is aging along with your pouch and so is your digestive system that was compromised to start with for some reason (whether it be UC, Crohns, fap or any other disease) or other so you may have problems linked to all of that but there is no timer on it.

My valve (k pouchers have anti-reflux valves to allow things to stay in and come out when needed) is the fragile part of my pouch because it is delicate and constantly being used but my pouch is just a piece of gut that was refashioned for a slightly different use.

There are foods that I used to eat that are on my  no-no list now like most breads, cakes and pastries, pasta and potatoes but I can still manage rice occasionally and full grain black bread or some other rough whole grains.

I have wittled down my diet to things that work and end up with mostly proteins with an overcooked  green veggie or salad and some fruit afterwards...my pouch likes that...if I go off the ranch then I know I am in for some serious trouble...diary means gas, pain, cramps and bubbly output for days...starches mean wall-paper paste...fibers mean hell in a handbasket for a week...It is like knowing which cards to play in a game...if I throw out the wrong one, I pay.

I would honestly do a 3-5 day liquid fast (this is a personal thing) to sort of reset your system (I tend to do them about 2xs/yr) where I mostly drink teas, juices and broths and then gently re-integrate 1 protein at a time like chicken breast in broth then another etc the next day...it takes me about 10 days to get my body back to eating 'normally'. By then I am feeling better and my pouch is more cooperative. Please understand that just because it works for me doesn't mean it will for others but it is a simple elimination diet that my doctors have used on me for years.

I take advantage of stomach flu or a cold to do it...once I am not eating anyway I just keep going...

By the way, I don't eat fast foods, eat mostly organic so I have little or no chemicals in my diet so that may be part of it...not sure.

Good luck and I hope that you manage to get your pouch back under control.

Sharon

Hi mine is thirty years old and will come out on Monday last ten years have been not the greatest. I had issues that sound like yours turns out have IBD in pouch still the inlet is inflamed could not pass anything but liquids gas only on my left side when lying down.  Tride different meds only pred. would work now on it three years too many side effects am 66 years do not want to deal with this anymore just hope I have made the right decision time will tell.

Poucho, you asked how I have avoided C. diff even though I'm taking Cipro every day. I think there are two reasons. One is that contrary to the myth often posted here, Cipro does not cause C. diff. Cipro alone makes it much easier to get infected with C. diff if you are exposed, but good hygiene (including by the people you share meals with) can reduce the risks hugely, and it helps a lot if no one in your home actually carries C. diff. Hospitals are tough environments, of course, with lots more infected people around, but they have "gotten the memo" at this point, and the good places are very, very careful. The second reason (in my case) is that when I added Flagyl to the mix I substantially reduced the risk of C. diff (though the antibiotic side-effects risk went up plenty). Flagyl is a pretty good first-line treatment for C. diff, though it sometimes fails to clear up an active infection. I don't know the statistics, but I'd guess that it's extremely hard to develop a new C. diff infection while on Flagyl. I'd been taking S. boulardi for a while, but I stopped bothering one I'd thought this through.

Hi Tracey, my pouch turned 26 this summer. Still going strong. Capacity has increased over time (I'm more in the 4-6 times/day now vs the 6-8 when I started). I had pouchitis a couple of times in the first year or so, but none since. The only thing I take regularly is Metamucil 2 times/day. I keep Imodium around but only use it occasionally. Odd as it sounds, I have noticed an increase in gas during certain times of year (namely fall & spring as the seasons change). I take an otc probiotic then which seems to reduce the gas. Life is good!

Best Wishes
I've had my pouch since 1991, and I have no intention of removing mine, even with my fistula.  My pouch has never looked bad, though, just a few apthous ulcers here and there, but all pouches have some degree of inflammation that is just what it is, since small bowel was never meant to hold stool.

I had 21 years no meds no issues. Then developed a perianal abscess then fistula and low-level IBD symptoms. Simmering.

Overall things are good. Never had nighttime issues but early on. Don't generally wake up to go, and average 4-6x in the day. No need for things to slow me down or thicken up: sometimes I'm *too* thick and take mag sulfate to help.

My GI has said to me that the mucosa of pouches are mutating to more "colon-like" readings on pathology reports and there is some degree of thought that that is triggering our bodies to again want to "attack" that new thing in there acting as a colon.  He said he's seeing this more and more with "older" pouches, not older people, that as the pouch ages, things are happening. 

People like myself who had relatively no issue over 2 decades are coming back with strictures, fistulas, increased pouch issues, etc.  It makes sense; when I had the procedure, they told me I'd be "cured," and I kinda was for a long time... but now he doesn't tell people that, or use that word.  He said he tells all patients contemplating J pouch that at least 1/2 are going to have some complication down the road (be that a stricture, pouchitis, etc.)

I wouldn't have changed my decision/path, though.  I deal with the fistula as best as I can, and I take meds again... not my ideal plan, but what can you do?
Last edited by rachelraven

Had my pouch made in '93 and had many ups and downs.  Pouchitis, cuffitis, Crohn's type symptoms (tho not diagnosed as "Crohn's"), and now fistula.  I would agree with Rachel's GI re. how our small intestine (jpouch) mucosa is mutating, and that can be an issue for some of us (not all, though!)


These days my pouch usually behaves itself.  As I'm aging, along with my pouch, however, I'm noticing a few more accidents and leaks at night, although nothing I can't handle right now.  Still on meds (canasa and/or anucort suppositories), and expect to be on those forever due to chronic cuffitis ....

 

 

My pouch was constructed in 2001.  I had my takedown a year later.  The only issues I've had was soon after takedown I had a small bowel obstruction due to kinking of my small intestine.  No surgery.  It resolved itself after 4 days in the hospital and deep massages by my colorectal surgeon!  (Ouch!)  Other issue has been very infrequent episodes of pouchitis.  It has always responded to a course of Flagyl.  I feel fortunate.  I can eat and drink whatever I like.  My pouch functions best if I eat smaller meals throughout the day.  Not a problem!

Originally Posted by TraceyH:

Hello all,

 

It's been a long time since I've posted here, but I'm wondering who else out there has had their pouch for over 10 years.  I've had mine for almost 18 now and I'm curious how other long-time pouchers are doing/feeling.

 

I must say, I've been better.  Have tons of gas even eating a low fodmap diet, strictures, I actually have to lay down on my right side to expel any gas because it doesn't expel otherwise, and it seems like I get pouchitis all the time.  Budesonide used to be what worked best, but I still find myself bleeding occasionally on it even after 4 weeks at 9mg.  Antibiotics only work for about two days and then I get diarrhea - and, most of them make me sick.  VSL is like a bomb.  Everything I used to do doesn't work any more and I'm feeling kinda scared.  I've heard out there before that pouches are only viable for about 20 years or so and then. . . ?  A re-do?  Live on antibiotics that make me sooooo sick? Sigh.  Thinking about seeing Dr. Shen - I've read good things about him.

 

Just checking to see what others who have had their pouch a long time are facing, if anything.  But I hope to hear that you all are doing great!  

 

Thanks so much for any info!

 

Hugs,

Tracey

Hi Tracey, I've had the j-pouch since 1992 and yes I get the pouchitis 1 to 2 times a yrs. maybe more. I eat non-fat greek yogurt. If you eat about 1/4 cup before every meal that should help the gas. There is a guy who wrote his own book about our problems. I am trying to fine him on my computer. He is great! I will get back to you. I think that going through the change can have a great effect on our pouch. I will get back to you with his name. Hang in there, sh-t happens!! LOL Kim

Last edited by kimmie

My pouch just turned 10 years old.  I have had pouchitis a few times and 1 partial blockage but things really were great the first 7 years.  Unfortunately a recto-vaginal fistula appeared and has slowly become more inconvenient.  The pouch still works great but the fistula is very annoying.  I am now taking Imodium daily to reduce the fistula symptoms. I have noticed more gas lately but thought it may be the result of taking Imodium...but who knows. Even with the fistula my quality of life is better then living with UC. I hope you can fine a resolution that works for you. Take care.

I have had my j pouch since 1986.  It was great for years.  Recently I am having trouble emptying it in one or two times.  And am having gas pain before and after bms.  Had pouchoscopy last year.  Surgeon used his finger to wider the narrowing at the attachment point.  Helped for awhile.  He said that pouches do wear out.  Based on how my pouch used to work and now, I am thinking that I need a pouch redo.  Any experience out there?

Mine turned 15 Jan 11 2015. No problems don't think I"ve ever had pouchits, If I did I didn't know it. I've never had to take any meds either. The first couple of years I went through the not trusting it when I went out because with the colitis when I had  a flair I wasn't sure when I was out what would come sliding out. All is good and I'm 85 so I was 69 when I got my pouch. I am still tap dancing every week and palates twice a week I can be as active as I want to pouch, has not been in the way. Hope this gave you some hope

gloria

I have had my pouch now for 24 years and going strong..had very limited bouts of pouchitis in the beginning. Was great the first 14 years then developed rectal, perianal abceses and now a nasty fistula which has had 2 x seton drains ..arent they a challenge ..

i have been interested to read everyones comments on Flagyl ect and c diff - in a twist of fate I became a nurse and  now work in a Gastroenterology unit - I cringe when "in patients "come to the day ward with c diff - but have not picked it up so far ?? good hygiene is  essential - documents say 3 metres but we practice 6 meters of protection and sterilising..

As others have written, it is all abit of a trial and error in sorting out what works for you personally.. my hat off to all of you for your strength and courage - wishing you all  better health love from Australia 

 

I've had my pouch for 30 years and have had very few long-term problems. With my age (56) and two children, my main problem is being 'female' and bits of me are no longer as resilient as they used to be aka they have moved downwards. I can blame gravity but a big part of my uterine prolapse and bladder problems are due to using the abdominal muscles to push and help clear my pouch. I'm now looking into getting a sacral nerve stimulator and, if you're female, read up on this now as it'll be an important topic for you.

I have had my pouch (s-type) for over 25 years.  Nothing out of ordinary, just lots of trips to the bathroom.

For the last 10-15 years or so I had regular small bowel obstructions and frequent kidney stones.

Last summer (2014) I had major gut surgery to remove scar tissue.  3 weeks in the hospital post surgery waiting for my intestines to start up again (post operative illeus).  The NG tube was torture!

 

Since then I have no blockages and no kidney stones.

Two glasses of metamucil daily.

I exercise vigorously (racquetball) at least twice a week, golf frequently and kayak eery other week.

Hi - I am new to the forum and would also like advice if anyone out there reads this.  My pouch was done in 1987.  I'm now 52.  I did really well with it for a long time - took no meds, ate what I wanted - but how I coped with working was not not eat much during the day as that meant many BR trips I was too embarrassed to take.  Then I'd eat at night where I could go to RR a lot. 

I worked as a teacher and then as a school counselor for23 years with the pouch. Finally, I'd just had it.  It was as others have said above - I was getting older and the old "don't eat all day" didn't work anymore.  I felt highly anxious and discouraged.  I quit my job and we are living very lean as my husband is also a teacher. Thank God we don't have any children.

I beat myself up about quitting and not making it to 30 years in schools a lot - and I mean a lot.  I felt like such a failure.  Sometimes I still do.  Immodium and fiber always stopped me up and gave me headaches.  They just didn't work for me. 

I would really like to work - but I just can't do it anymore with my old pouch.  Being at home with it is much easier.  I can eat when I want and have my RR right there - it's made me a bit of a hermit, but I can still go out and do things.  But I can't imagine a 10 or more hour day at work like I used to do. 

I am embarrassed to ask this, but I'm going to anyway.  I never dreamed I would ask this - has anyone ever applied for disability due to issues such as leakage at work, explosive BMS at work (that's what mine are always like), and then depression at just the years of having the pouch and dealing with it?  I hate sounding so weak.  I know many people in the country take advantage of disability and I do not want to be a bad person.  But, the truth is I can't work like I did.  I did do a part time job for about 2 years after stopping counseling. I taught knitting at a Michaels.  At first that was going ok, but then, as time went on, I still needed to suddenly get up to go to the rr...come back..get up, and it made me panic and I finally quit that job too.  It's like all my years of "mind over matter" and positive thinking just finally went and I was done. Not with life, but with working and needing to be there as with my pouch - ya never know if it's going to be a good day or bad one.  There doesn't seem to be much rhyme or reason to it.  I'm not saying "woe is me" .  But I do wonder if I should apply to get some money since the FAP, j pouch, and subsequent depression/anxiety (all related) have made me unable to work.  If I could find some job typing on the computer at home - and make money - I'd do it!  I've tried and have not found anything.  Anyone out there who has any advice?  Thanks to all. 

29 years and in a few months it will be 30. Had pouchitis with about 18 month intervals until about 10 years ago when it seemed to be every 3 months at which time my new doc (I relocated coasts) clinically diagnosed me as having crohns. I just confirmed recently that technically we've never biopsied crohns tissue but 2 strictures that developed in my jpouch seem to confirm the dx. I am now on Humira weekly paired with methotrexate and have now moved beyond the frequent obstructions (presumably because of the strictures) and also the pouchitis; although am now contending with pouchits but likely due to self inflicted ischemia from marathon training. i would think given its birth about 35 years or so ago, we are looking at the oldest jpouchers now also reaching middle age and beyond. plenty of senior citizens tend to have gastro issues, so will that show up more for us? who knows it would seem logical but does that mean the pouch is aged out, i am not convinced.

Angie, if you cannot work then apply for disability. There are people who can work who are on disability but it seems you've done your time, and now are unable to work anymore, so why not. caveat is that you will first need your doctors on your side and then be prepared to fight the bureaucracy, from what ive heard that will be your hurdle, also most seem to claim having an experienced attorney to help navigate is best.

 

Thanks - I truly appreciate your response.  Not sure if I have it in me to fight the system.  I'd rather try to work.  I miss it, but just don't think I could do the 10 hour days.  That said, something in me wants to try to work still. So, maybe I will try one more time to get back into workplace and see if I can give it a go.  I'm 52 and it feels too young to drop out of workforce. If I go for it and fail, at least I know I will have tried one last time - I don't want to be a quitter.  My husband says, "no way in hell" whenever I say I want to go back into school counseling.  He sees things in me that I don't.  He just wants me to stay home and take it easy and not fight the worker's battle anymore.  I know only I can figure out what to do, if I want to fight the disability battle or not, etc. - I know no one out there has the answers for myself but me.  Proud of you for running marathons!  I used to run a lot with the pouch - and then leaking became an issue.  But, I wonder if I work on exercises (pelvic floor) if maybe I could run a little again.  Again, only I can do the work to try to get my life back.  And, if it doesn't work, I'll have tried and could apply for disability without feeling so damn guilty about it!

Had my pouch made 15 years ago this month and reattached a year later. Chronic pouchiti from day 1. This past spring all meds stopped working. Been on all, either they stopped or I had a reaction. See signature. In and out of the hospital the first years with adhesions. Anyway, had to have a emergency ostomy. Developed diversion pouchtis from it so I'm getting reversed this week and started on Entyvio. Hopefully this will keep the pouch ok. I have a 50 50 shot. Looking forward to another 15 years, lol. My GI told me they are seeing a lot of problems in older pouches. I go to a big city teaching hospital and they come from all over the country.

You have been through it all and back.  Adhesions have been a nightmare for me too.  Can't really count surgeries on those through the years.  It's all a blur.  I'm sorry you had to finally give up the pouch - it would not surprise me if I have to eventually.  In fact, I've told my husband - I'd prefer it I end up in a nursing home - can you imagine lying in your own feces day in and day out?  Because for j pouchers - that's what it's gonna be.  We all think we won't end up in a nursing home.  Our goal is to move to a state with assisted suicide so that we can avoid that fate - but often, one spouse dies, kids come in and won't let you go and you are out of your mind.  I watched my precious Grandmother go through this.  She wanted to be dead and was in home for about 4 years.  They had her pretty doped up and comfortable.  Diapers. But she had no j pouch.  She still had constant UTIs.  I don't mean to be a downer, but I think it would be wise for our generation of pouchers to try to be proactive about our futures.  That's a discussion board I'd like to see.  How to be take care of ourselves legally so we don't end up in home lying in diareha (sp) for years. I promise - those CNAs aren't gonna clean it up.  I know we should dwell in the now - but as a group, this is something we could discuss and possible come up with some type of legal form for j pouchers and nursing homes.  I'm off topic - but I do think about it at times.  Thanks for your reply and I really am so sorry you had to go back to ostomy.  Have friends who have had to do so - they don't love it, but they do love not having to run to poop every half hour.

Angie, I'm actually getting rid of the ostomy next Thursday and going back to the j pouch. But I also had to go on Entyvio a new bio drug to keep pouchitis away. Will see if it works after the reversal.

I too think about life in a nursing home but you know what, not dude having a ostomy would be any better as it can leak, has to be emptied a lot, has to be changed, skin issues, etc. 

Best to try and keep the pouch healthy. 

Great points you made and thanks for responding.  I will be rooting for you and your new pouch!!!  I hope when you are up to it you will post on this thread so I can cheer you on.  BTW - how to I get all the stuff I've had done to list under my profile - I tried to figure it out by going to profile page - but I guess I'm old and clueless. Just let me know if you have time.  It'd be good for me to list it all- to sift through the years of stuff - it's funny - so many surgeries and mishaps that I'm so used to it I forget.  This may sound dumb - but on this forum - it's sort of like a point of pride to say - look at all the shit (literally that's happened - and I'm still here - and I can still be thankful for my life.  This forum has helped me enormously.  I didn't realize how alone I had been feeling.  Good luck with the new pouch - you know it'll be tough at first - but this time - lets go for a full out victory for you!  You have a great attitude.

Thanks Clouseu - you are inspiring!!  My best friend was diagnosed with follicular lymphoma about 6 weeks ago - she is doing really well with it and the treatment so far.  Good for you to travel so much, too!!  We can't do that now - but it's mainly for financial reasons - we hope to travel as much as we once did in the future.  Thanks for the positive attitude!!

skn69 posted:

Hi Tracey

My k pouch (still a pouch just a different exit) is 35 yrs old and going strong.

There is no reason that a pouch should have an expiration date on it...it is still your own small bowel and is not made out of some man-made biodegradable material that falls apart after a certain time.

Sure your body is aging along with your pouch and so is your digestive system that was compromised to start with for some reason (whether it be UC, Crohns, fap or any other disease) or other so you may have problems linked to all of that but there is no timer on it.

My valve (k pouchers have anti-reflux valves to allow things to stay in and come out when needed) is the fragile part of my pouch because it is delicate and constantly being used but my pouch is just a piece of gut that was refashioned for a slightly different use.

There are foods that I used to eat that are on my  no-no list now like most breads, cakes and pastries, pasta and potatoes but I can still manage rice occasionally and full grain black bread or some other rough whole grains.

I have wittled down my diet to things that work and end up with mostly proteins with an overcooked  green veggie or salad and some fruit afterwards...my pouch likes that...if I go off the ranch then I know I am in for some serious trouble...diary means gas, pain, cramps and bubbly output for days...starches mean wall-paper paste...fibers mean hell in a handbasket for a week...It is like knowing which cards to play in a game...if I throw out the wrong one, I pay.

I would honestly do a 3-5 day liquid fast (this is a personal thing) to sort of reset your system (I tend to do them about 2xs/yr) where I mostly drink teas, juices and broths and then gently re-integrate 1 protein at a time like chicken breast in broth then another etc the next day...it takes me about 10 days to get my body back to eating 'normally'. By then I am feeling better and my pouch is more cooperative. Please understand that just because it works for me doesn't mean it will for others but it is a simple elimination diet that my doctors have used on me for years.

I take advantage of stomach flu or a cold to do it...once I am not eating anyway I just keep going...

By the way, I don't eat fast foods, eat mostly organic so I have little or no chemicals in my diet so that may be part of it...not sure.

Good luck and I hope that you manage to get your pouch back under control.

Sharon

Hi Guys,

I have had my  j- pouch for over 35 years and I have had no real problems.  Half of the stuff people are talking about on this board, I've never heard of.  I did experience the pouchitis for a bit, but I toke the cipro and it went away.  I had my surgery performed in 1980 and I sometimes think that I had a different surgery than others because I didn't have any problems, or other surgeries for at least thirty years.  I do have a problem with gas now more, depending on what I eat.  I also have a hard time with my Doctors because they don't understand why I still take librax for so many years, but that is the one thing that controls my bowel.  It annoys me that I have to explain it to them.  I've been taking it for over 30 years and if  it has not bothered me yet,  why would I stop now.  The alternative is not an option.  My bowel backs up, I get sudo  cyst and its very painful.  For the gas I have discovered that cinnamon and honey are very good for that with a little ginger.  Also,  I can NOT eat late at night, and I have to choose my vegetables carefully.  Other than that I'm good! 

a

Cinnamon, honey, ginger.  I've heard this before - but not the honey part.  If you have time, can you share how/when you take these?  (as in - before a meal? after?).  I'm a 30 year poucher and gas has always been my # 1 problem.  I asked about it and doc said - just the way it is.  I tried all kinds of things thru the years - gas x, charcoal tablets, etc. - nothing seems to make a difference.  It is so loud and embarrassing - fine at home, but that is what really puts some limits on my life - I have often wondered if I were male, perhaps I wouldn't care and would just go make noise and stink up public restrooms  My husband says guys don't care.  There is a stigma about this with women - or maybe I am just too full of pride - but I just can't use public rest rooms much.  Any ideas out there are welcome.  As for women who say - I don't care - good for you.  Mine has been loud and explosive for 30 years - I really doubt it will change. But I am open to any suggestions.  Thank God this forum is here or I'd never be able to ask these questions. BTW - my Dad's is this way and he doesn't care - never did. My sister has the pouch - but she has less gas and a slower GI in general - who knows why?  She does not go in public rr unless absolutely necessary either. 

Mine is over 20 years old now. I'm another one that has been on antibiotics for constant pouchitis for a decade now. I can't get off them or the pouchitis gets so bad I'm non-functional. With the antibiotics it's manageable, but I still wear Depends at night for leakage and B-Sure pads during the day and am always on the lookout for the next bathroom when I'm out and about.

With all that, I've still led an active life. I have traveled extensively (been to all 50 states, and I travel internationally to China and Thailand every year). I have a demanding job and have been able to keep it up even with all the bathroom trips I need to make, but it is always a struggle. I wonder how I'll manage as I get closer to 60 and beyond (I'm not yet 50). I still hold out hope that I will find a diet/supplement/exercise/lifestyle regime that greatly minimizes or even fixes all the pouchitis issues I've still experienced - but have less hope for that as the years are going by. My current experimentation is all about reducing inflammation with hopes that my system can heal better.

All and all life with the pouch has been great compared to the severe UC I had prior the the pouch, but the pouch is not a "cure" for UC in my mind, but rather just significantly reduces the symptoms.

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