Anyone else have an 'old' pouch?

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.

My Kock Pouch is 37 years and 7 months old.  I've had one dilation, and I started wearing my catheter last year 2014 due to a stricture and bend in my valve entrance right before the valve itself.  My valve doesn't leak and never has but I am highly allergic to adhesives so I'm staying the way I am.

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.

My pouch is 20 plus years old and am on antibiotics every day and in the bathroom about 18 times day, some leakage but am used to it and still travel around the world regularly, always looking for bathrooms, and still play tennis every day.

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.