Are you happy with your j pouch?

It's a love hate relationship right now.
I am in the middle.
Sometimes I am happy with it. Sometimes I am not.
Getting better as time goes by.
Richard.

No but it's better than the alternative, IMO

Number of trips to the bathroom depends on what's going on & varies from 3 - over 15

Raw fruits and veggies don't agree with me well so I make a smoothie out of them each day and pulverize them with my Vitamix.


I think pouchitis or inflammation is always there but it varies in how bad it is. I've been rotating between 2 antibiotics to treat it along with using VSL#3DS probiotics. I can go weeks with out antibiotics but usually not more than a month.

The best thing about my pouch is that I prefer it to having an ostomy. The worst thing about my j-pouch is in the past I hope!

I use loperamide when needed and rarely use metamucil gel caps anymore.

I'm not exactly happy but feel blessed to have it. My 7 year old grandson asked me what my surgeries were for. I told him I was very sick and the doctor operated on me so now I'm alive

It inspires me to continue appreciating each day that I have the opportunity to try new things and overcome many obstacles. It does not prevent me from doing any physical activity (gardening, kayaking, traveling, home repairs, working. Etc.) And I eat just about anything I want. I don't like most citrus fruit (even though , I have 15 fruit trees, but give all of my fruit away) and I don't have much trouble with any vegetable. Just can't handle Campbell mushroom soup (a staple for a few of my favorite recipes), so I substitute it with cream of celery.

I take only 1 probiotic tablet a day and 600 mg neurotin (for nerve damage from my migraine related stroke).

Now that I have adapted to the new me (damaged goods), the idea of the whole pouch thing resides mostly in the background of my thoughts most days. I only think about it, when a ponder / think about dating or starting a new relationship. I am 52, went through a lot of trauma through my divorce and illness all at the same time. Finally made peace with my ex husband and then he died 2 months later.

So ..... I don't think I am emotionally or mentally ready to date anyway and I am not actively looking.

Yes, I'm happy with my j-pouch.

Typically, I have 6-12 BMs a day, depending on what I eat.

I eat raw fruit and vegetables every day, and yes, I tolerate them.

I get pouchitis or pouchitis-like symptoms 2-4 times a year. I think it is usually bacterial overgrowth from occasional partial obstructions.

The worst thing about my j-pouch is that it is not a colon and never will be. The best thing is that it is NOT MY colon, which was trying to kill me.

I take Imodium regularly, but not as much as I used to. I do not take lomotil. I do not take fiber, except as food.

Bottom line, you cannot return to your former state of bowel function that you had before your colectomy, regardless of what surgical option you choose. Learning to accept a new normal helped me be happy and stay that way, even with the imperfect j-pouch life.

Jan

I'm very happy with my j-pouch. I have no regrets and feel fortunate that this surgery and excellent, caring doctors/nurses/staff were available to me.
I use the restroom 8x daily approx. Every time I urinate I also poop. I drink loads of water each day, so I urinate every few hours.
I've had my pouch 20 years and have had pouchitis 1x, induced by NSAIDS used for migraines, and I'll never use that drug again.
My pouch keeps getting better & better. For quite awhile I couldn't eat raw veggies and now I can, including apples with skins. The pouch seems to like this fiber.
Best things: not feeling the urgent need to use restroom/feeling healthy/being able to do as I please.
Worst thing: If I have chocolate or whipped cream at night the pouch sometimes leaks, prob. because these create gas in me, so I eat those, esp. chocolate earlier in day.
I don't need to take Immodium.
Rose

im currently stuck between surgeries 2 and 3 so my j pouch hasn't been used yet.

life is good with my loop ileostomy though, i eat and drink everything i want and i particpate in high intensity sports. there is nothing i can't do.

the only downside to the bag for me is that i like to have it freely hanging to allow stool to flow down. this means i rarely tuck shirts into my trousers.

looking forward to using the j pouch though and being free of the bag. the image doesn't bother me too much but i dont feel comfortable being topless by the pool for example.

Are you happy with your j pouch?

Yes. I've had it for almost 24 years (January 10th is its birthday). I had 20 years of VERY minimal issues. The pouch itself is still working well, despite some issues.

How many times do you go to the bathroom a day?

Varies. Yesterday? Two, believe it or not. Usually 4-6ish. No Imodium or Lomotil or anything else ever taken.

Can you tolerate raw fruits & veggies?

For the most part, yes. Well, for 20 years, yes, I ate indiscriminately, and had NO problems. My newer issues tend to be I occasionally stricture at the outlet, and sometimes a raw fruit or veggie can get blocked. I can eat salads (lettuce/spinach) without issue, but I'm careful with, say, more than a few mixed in bites of raw carrot, for example. I mostly avoid seeds, nuts, mushrooms, bulk amounts of raw stuff (besides lettuce), quinoa. Stuff like that.


How often do you get pouchitis?

Rarely, but it has happened a few times. NSAIDS were a culprit, so I don't take them anymore.


What's the worst thing about your j pouch?

The strictures and the fistula I developed. I'm some sort of possible new IBD issue kinda girl convert... Doctor isn't quite calling me Crohn's, but it's possible that's what it is.

What's the best?

I was med free and carefree for 20 years after surgery.

Do you take fiber or lomotil regularly?

Nope. Never needed it.

How do you do with acidic foods? Like tomatoe sauce? Lasagne?
How many times do you get up in the night?

Are you happy with your j pouch?
Yes

How many times do you go to the bathroom a day?
5-6

Can you tolerate raw fruits & veggies?
Some but not all. I can eat any raw fruits, including apples with skin. I can eat salad but I don't snack on carrot sticks.

How often do you get pouchitis?
I have had C. diff twice but I have never had 'traditional' pouchitis.

What's the worst thing about your j pouch? What's the best?
The worst thing is having an itchy butt sometimes The best thing is that I'm not sick anymore.

Do you take fiber or lomotil regularly?
No.

How do you do with acidic foods? Like tomatoe sauce? Lasagne?
No issues.

How many times do you get up in the night?
About half the time I get up once, otherwise not at all.

Yes, I am very happy with my jpouch.
I don't know how often I use the bathroom in a day. It doesn't seem to negatively affect my life.
I live mostly on raw fruits and vegetables.
I have had pouchitis once in 14 years.
I can't think of a worst thing?
The best thing is that surgery gave me my life back and I can participate in the physical activities and travel that UC prevented me from doing. No regrets here.
I do not take fiber, I get it from fruit. I do not take lomotil unless on a long distance multi day hike.

Sue

It took me a long time get back to some normalcy. I struggled with food in the beginning but seem to tolerate different foods a little moor as time goes on. I do get pouchitis quite often but I learn to deal with it. I try different foods that I could not eat before and if it still does not agree with me I keep trying. I also have to take raw fruit in a vita mix it seems to digest better. My vegetables are always cooked. Can not handle gassy vegetables. Dairy products are always lactate free. If I didn't have the surgery I probably wouldn't be here. It took a long time to get my life back. I do still struggle but I am very happy to be here. Life changes for everyone. We have to learn how to cope with the obstacles of life. It is just another chapter in life. You always have to feel positive and you know saying "This to will pass" I try to be happy and grateful for every thing in my life. I would say yes I am happy that having the j-pouch surgery not only saved my life but gave me quality of life. There are days that I don't feel well but I am here to watch my family grow and enjoy all there endeavors. I also thank the group for listening to us when we do feel down and we always get replies that helps a lot. We all understand what we go thru and that is a plus Thank God for that Health to all Grace

quote:

Bottom line, you cannot return to your former state of bowel function that you had before your colectomy, regardless of what surgical option you choose. Learning to accept a new normal helped me be happy and stay that way, even with the imperfect j-pouch life.

This.

Without the j-pouch, I'd be dead. Docs tell me I was about 4 hours from shuffling off this mortal coil when they did my emergency surgery to remove my colon.

I'm a little past two weeks post takedown and even with adjustment issues, I'm very happy. Some nights I'm up once, some twice, but this was also true with the ostomy for me, especially at first.

I've not expanded much beyond a low residue diet yet, but I ate a massive portion of baked ziti last night with no ill effects from the tomato sauce.

I think you also need to remember how much your mental attitude can impact recovery. It is normal to be freaked out and scared about this process, but if you let those fears dominate your life, I think you're in for a rough ride. I went from knowing next to nothing about UC to diagnosis to no colon in less than a month. I had complications after the colectomy that kept me hospitalized for another month. I'd never been sicker or more afraid, but with time and a very solid support structure from family & friends, I was able to heal emotionally.

And I trully believe that the emotional/psychological healing was more important than any physical healing.

To add on...

Pretty much fine with acidic foods. Hot foods used to be fine, too, but occasionally can get a little irritated, but some A&D usually takes care of it.

Mostly don't get up at night, 90% of the time. If I eat late, or indiscriminately, maybe once.

Are you happy with your j pouch?
Yes very happy.

How many times do you go to the bathroom a day?
4 to 6x a day average. Sometimes less, sometimes more. It can depend on what I eat.

Can you tolerate raw fruits & veggies?
Yes I am ok with both but some I tolerate better than others.

How often do you get pouchitis?
Haven't experienced pouchitis yet and hoping it stays that way!

What's the worst thing about your j pouch?
The worst thing would be still having to get up at night to use the bathroom. It's usually only once but it can be more. I haven't slept thru the night in 15 years between having two kids, then UC then the j pouch! (oh and cleaning the toilet every time you go is no picnic either, lol)

What's the best?
Having my life back and being UC and drug free.

Do you take fiber or lomotil regularly?
Never have taken any Imodium or Lomotil.

Thank you all so much for your thoughtful, helpful replies! I greatly appreciate it!!!

I was never happy with my pouch. I had chronic pouchitis from day one. It took 1000mg of cipro daily to get me to a point where things were ok...by that I mean 12+ bathroom trips during the day, 2-4 at night, had to stop eating after 6pm or overnight bathroom trips would double, was tired all the time (from cipro and the pouchitis).

I tried everything to get rid of the pouchitis - diets, different drugs, holistic treatments, you name it, I tried it.

3 1/2 years in I opted for an end ileo (at the age of 30) with a discounnected pouch. 18 months later I had the pouch out.

Now I am drug free, can eat anything, have had two children, work full time (from home as a Disney travel agent), am co-chair of my kids PTA, travel, swim, anything I want! Oh yes, and I had 2 kids :-)

]Are you happy with your j pouch? - Yes, very happy.
How many times do you go to the bathroom a day? - It varies depending on my diet and activities, but anywhere between 4 - 8 is the norm.
Can you tolerate raw fruits & veggies? - the short answer is yes. I can eat tomatoes, cucumbers, baby spinach without issue. Other raw veggies I eat in moderation as I have had obstructions (not related to the pouch but to adhesions at the old stoma site). Cooked veggies are fine, though I have had trouble with cooked denser veggies such as Chinese vegetables.
How often do you get pouchitis? - I have only had pouchitis twice; the first bout was 11 months post takedown. I didn't have another bout until last summer, over 5 years out. Both bouts cleared with one course of cipro/flagyl
What's the worst thing about your j pouch? - honestly there is nothing I hate about my pouch. My pouch itself is typically well behaved. That being said, it takes longer to use the bathroom, generally. I still get butt burn/irritation. I'm constantly cleaning the toilet. All small inconveniences, however.
What's the best? - essentially feeling like I have my normal life back.
Do you take fiber or lomotil regularly? - no, neither

My J-pouch became functional in 2004 after a year of living with a temporary ileostomy (by choice). I can eat and drink everything and I do. No food or drink bothers me and if it did, I'd live with it. Only concern is a hernia I have which looks gross but I'm not willing to undergo a surgery to correct it. I gave up counting how many b.m.s I have during the day. No problem. I'm up 2-3 times per night to use the bathroom but that's because I am an evening eater. When I eat normally I'm only up once! My life is so liveable! It wasn't so with ulcerative colitis.....not at all!!!!!

Are you happy with your j pouch?

Yes. I mean, I wish it was in better shape right now, but even if I had to do it all over again, I would still do it.

How many times do you go to the bathroom a day?
5-6, usually none at night

Can you tolerate raw fruits & veggies?
Yes. Cooked, no problems. If I eat raw, I try to eat them in combination with a starch and/or protien-if I ONLY eat a bunch of raw veggies I will end up with watery stool.

How often do you get pouchitis?
Years ago, maybe once/year? Then 2-3 years ago I developed chronic, refractory pouchitis-been battling it ever since, currently using UC meds to treat it.

What's the worst thing about your j pouch? What's the best?
2 worst-1st, that when my sphincters were damaged post surgery to treat an anal fistula, it was only then that I and my docs realized how much MORE we pouchers reliy on our spincters than a coloned person to maintain continence. 2-that I have developed this chronic pouchitis.
BEST-it gave me a normal life through college and much of my 20s, med free and mostly issue free. I still feel like my quality of life I have now, pouch, damaged sphincters, pouchitis, and meds is better than quality of life with an ostomy would be. Back before meds got my pouchitis back under control, I was at a point where the tipping point was coming-significant pouchitis you can't get into remission, with my incontinence issues was not going to be a long term good quality thing. I was avoiding camping and other things I loved to do. I really think you have to ride out your own situation and figure out where your own tipping point is. Pouch removal is a serious decision that you can't take back, but for some, it is the right choice at the time they make it. I think it is all about quality of life. The challenge is that an ostomy presents it own unique set of issues and challenges to deal with, so while it "solves" some problems, it has potential to create other problems of its own, so weighing your choices is difficult.

Do you take fiber or lomotil regularly?
Yes-I take a lot of fiber and immodium and even codeine to help thicken my stool. I have taken these since I had my fistula surgery and developed incontinence issues and needed as thick of stool as possible. Beofre that, with a normal working pouch, I took nothing.

Happy with pouch? Way better than UC so extremely happy...
How often going? 10-12 times a day. If I am at work and standing all day I got a lot more. when I am home I go way less.
Night time? at least once a night every night for 7 years...
Food? I have learned not to tempt obstructions cause they SUCK!!! no mushrooms or hard to digest veggies. No greasy fried food or sugary foods cause the buttburn sucks...
pouchitis? never...
quit taking drugs to slow bowel....doing better without them...
hope this helps.

i havent visited the site in quite awhile but thought id chime in on someting like this, as i am about 3 years i think.

Are you happy with your j pouch?

meh.....so so....im not where i thought id be, based on reading or hearing about expectations or how other people have been. im getting used to it i guess. hard thing for me was that i didnt live with UC for very long......it was out of nowhere, very quick and aggressive, and bam. colon gone. so its harder for me to accept/enjoy the "difference from when i had UC"

How many times do you go to the bathroom a day?
7-10

Can you tolerate raw fruits & veggies?

i seem to tolerate all raw fruits and veggies. i generally take it easy on carrots though.....cole slaw/raw cabbage sometimes bothers me.... raw OR cooked mushrooms are weird. they completely liquify evverything inside of me it seems. and it really cleans me out (and actually, this is something i enjoy,,,,feeling completely empty)........red wine also does this for me, again, which i enjoy. not sure why the mushroooms do it. ive heard of people having similar experiences with wine though....funny side note, any lettuce that isnt of a crisp type, i usually crap out the entire leaf. lol.

How often do you get pouchitis?

I dont THINK ive ever had it. though i will get days where the butt burn is bad, and then in turn leads to a feeling of inflammation, as if there is a tennis ball sized rock lodged in my rectum.....BUT, this seems to resolve itself in less than three days (though the occasional bad run of a week or two where things just seem "off")

What's the worst thing about your j pouch?
for me the worst thing is the butt burn i get. iive heard that after time for a lot of people, it ends up being nonexistent. that is not the case for me. i get it, and TRULY, it seems to come out of nowhere from nothing. ive done the journaling/analysis of what im eating and when i get it, and it seems that it just decides when it wants to, to be irritated. i can eat one thing, then eat the exact same thing another day and have extreme burn. the only things i KNOW for sure irritate me is spicy stuff (which sucks because i LOVE spicy spicy spicy), Pizza if it doesnt have enough vegetables on it or if im not eating it with a side dish of insoluble fiber...honestly, i think its simply too much cheese(i think primarily melted) without enough carb or insoluble fiber....a plain cheese pizza will mess me up/give me burn, but a loaded pizza wont...........too much chocolate will give me burn too. the worst part about my pouch is definitely the burn i still experience. .......... oh also, noodles seem to mess me up/give me burn. and eggs (which stinks too, because i love eggs!)

also, i seem to wake up for bathroom or because of gas, at least 2 times a night, and more often than not, 3 or 4 times a night.

What's the best?

the super weird days where i feel normal, and only go to the bathroom only 4 times for pretty much no reason. i guess another "best" thing about it is that it has kind of forced me to be healthier, just by nature of having to stop eating certain things and volume of things that irritate me.

Do you take fiber or lomotil regularly?

immodium 2 pills 2x a day. i used to take nothing. then i started fiber supps, which seemed to make some things worse. went back to nothing. then gave in and started doing the immodium......its because i was going 8-13 times a day. the immodium has gotten me down to 6-9 times, with maybe once a month having an over 10 day. which doesnt seem like much help, but the less the better. immodium used to make me feel kind of foggy, but i just got used to it.

anyways, if theres any more questions, ask away. good to seem some of the regulars still sticking around!

Ro and all,
FYI my butt burn problems left after getting my CoCo bidet. I hear other brands work great too. The one I got was $329-350 and well worth it. I'd had my take down approximately 3.5 years by that time. I'm 4 years out now. The bidet helps cut down on the # of trips and TP. When I know it hasn't emptied everything I use the "turbo" function to help empty the rest. You can give your a full blown enema with the water pressure set stronger if needed. My GI approved of the clearing the pouch out like this as he said it's good to get the waste out. You don't want to leave it in the pouch longer than it needs to be to maybe contribute to my pouchitis.

ahhh!! interesting. at first i was wondering how the bidet helped in this respect. because i was goinng to say, more of the burn seems to be slightly on the inside. and i have a hand held thing, and use calmoseptine and what not..........but that makes a ton of sense to use "turbo" and have it double as an enema/irrigation type of function.......therefore getting OUT all of the stuff causing the irritation. wow...now i really am considering springing for an ACTUAL bidet....there was a point that i was considering/seeing what i could find on irrigation...and i honestly am not too keen on shoving a tube up there.....this though, this i think i could handle. thanks for the tip!

Are you happy with your j pouch?
I got my j-pouch 5/2002. The first two years was a living hell. I had the worst problem with fecal incontience and butt burn. After I went to pelvic floor physical therapy, I was able to better manage my fecal incontience. Now I only having the problem with I have pouchitis, butt burn, the gastric bug, lift too heavy of an item. When I was pregnant, I had fecal incontience the entire 9 months. Now I love my j-pouch. I still have problems with butt burn but it is manageable.

How many times do you go to the bathroom a day?
between 8-15 times a day. depends on what is going on. When I pee, I poop. I have to sit on the toilet every time. It gets to be a mess if I don't sit down to pee/poop. The poop "goes everywhere".

Can you tolerate raw fruits & veggies?
no problems. I avoid lettuce, do to a problem before my j-pouch surgery. I avoid mushrooms too. I can only drink fat free milk!

How often do you get pouchitis?
not often enough to make me not want the j-pouch

What's the worst thing about your j pouch?
From thinking about where I would be if I did not have the j-pouch, I would be dead. I can't think of anything that is bad about the j-pouch. I was single when I got the j-pouch. My parents wanted me to wait until I was married to have it done. They were worried "no one would want me". My quality of life was so bad that I had to have the surgery. I could not even date! I had the surgery and two years later I met a wonderful man who did not have any problems with my j-pouch. He was happy I was honest. I told him two weeks after we met. He was fine with it.

What's the best?
I am living! I was told when I was 29 that if I did not have colorectal surgery by the time I was 30, I would never see my 40th birthday.
I don't hurt like I used to.

Do you take fiber or lomotil regularly?
When I am having problems, I take lomotil. I don't see it as a problem.

Ro, I had a hand held sprayer, before I got my bidet, too. You will definitely love your bidet.

I am very happy with my j-Pouch.
I eat raw veggies and fruit without problems
I do not take lomotil or fiber supplements
Worse thing about having a j-pouch is butt burn occasionally
Best thing about having a j-pouch is having control, not running to a bathroom and not making it,not having pain when I go to the bathroom
How many times a day do I go to the bathroom, maybe 6 times, usually once in the night, I don't really think about it.

I guess it depends on the day if I am "happy" about it. It definitely comes with it's own set of challenges.

Veggies and fruits are the only way my body accepts sugar. Raw or cooked are both fine. Any refined sugar or honey and even maple syrup is a big no-no. Once I figured that out things got much better.

Favorite thing about it is not being scared of colon cancer like I was.
Least favorite I would say is trying to explain it to someone that doesn't know anything about it and they then tell you about their IBS. If you followed the statistics of everyone I've ever talked to I think about 90% of the population has IBS (self diagnosed) and tells you they can relate. Lol

I am currently taking 30mg codeine and a lomotil 2xdaily. Looking to start weening that down in the new year.

It isn't a perfect solution by any means but heck, I wasn't perfect before either.

I don't have a J but a K pouch...same pouch, different exit...I use a tube through a stoma.
Some of the problems are the same and many different.
I have started taking probiotics again after years without them. My normal was around 15xs/day...now with probiotics it is aroud 1/2 that.
They help no matter what pouch you have.
I find that I am a bit more immune depresant than those around me with a colon...I think that it goes with the territory.
My pouch is my friennemy...Some days it works miraculously others it is hell...but I eat a lot more foods than many of my colonned friends and even tollerate hot foods within reason.
I find that carbs hate my pouch and I do quite well without bread products, cake and pastries but my pouch has gotten used to many diary products and handles small quantities well although I can no longer drink milk, hot or cold.
I cannot say that I regret my pouch in spite of all of its complications but yes, given the alternatives offered to me, I prefer it to an outside bag. Personal preference not opinion.
Do I recomend it? Yes, heartily if needed. But I would have loved to have a healthy, happy colon in its place.
Sharon