30 year + pouchers

looking for any 30 year pouchers, any out there?  Would love to hear your stories, good or bad.  What has worked for you, what foods are triggers?  My opinion is that sine the  J Pouch is made from small intestine, if you don't abuse it too bad it shouldn't wear down.  The pouch tissue should hold up bearing a good quality of life.....hopefully some stories out there support this.

any Humira users after surgery???

Original Post

This year makes 31 years.

I am feeling great. Couldn’t be happier about my results.

For what it is worth here is my routine:

1) I take 250mg cipro (brand name) 1 x per day prophylacticly to avoid pouchitis. Have been doing this for 20+ years. I found the generic didn’t work for me. This is unfortunate because the brand name is very expensive. Note I was told long term use of cipro can cause ligament problems but I have not had any problems with this.

2) if I have difficulty completely emptying my pouch naturally I give myself a water enema by using a rubber bulb syringe. This works within a few minutes 90% of the time. Sometimes need multiple bulbs full to get enough water pressure to clear the pouch. NEVER EVER take a fleet enema with a pouch - even before an examination. Just use tap water. Fleet burns me like a SOB! and is not necessary.

3) if I get pouchitis I take a Zithromax pack for 5 days. Typically 2-3 times per year. After 5 days I am good to go. (I still take cipro too)

4) I avoid cauliflower, cabbage, cantaloupe, watermelon, pistachios and onions. Tai food can be an irritant but it taste so damn good! Some garlic, raw carrots, cooked broccoli and grapes are ok - too much not so good. I eat salad every day. I eat tons of rotisserie chicken, turkey breast, yogurt and cashews.  Cooked veggies are good except mushrooms.

5) I don’t need much sleep - maybe 6 hours / nite is fine for me. If I don’t get enough sleep it does irritate my pouch.

I don’t know anyone else with a pouch so this is my first time sharing my experience. Best wishes for good health to all.

Brad, thank you so much for replying it's very helpful.

I'd like to know why all the Cipro and for such long term?  Are u having infections?

What is exactly is symptom of Pouchitis?  I'm thinking its urgent bowels w butt burn but does it come w rectal infection?

I have a hard time w bloating, seems like everything i eat bloats me and some foods run through me w watery stools.  I've pretty much dialed it in on trigger foods.  Main thing w me is sleep and bloating.  I've developed adrenal fatigue/chronic fatigue and I tend to wake up every night in middle of night at least once to empty.  It's pretty frustrating but so far nothing serious to note, surgery has been successful im few years out and just take it week by week.

cheers!

 

26 years this June and still "going" strong. Take one packet of VSL #3 daily with kefir and 2 Florastor daily. Take 2 imodium tablets in morning & evening (if I remember) and prescription potassium daily. (Also take Ubiquinol, omega 3 fish oil and transdermal magnesium to keep migraine headaches at bay, which may also be good for the pouch.) Can eat almost anything as long as I thoroughly chew. Can enjoy all fruits but eat only cooked veggies. Sauces tend to give me gas. Do enjoy sweets, but overdoing will cause the big D and butt burn. Am so thankful to have had the most wonderful and patient doctors & medical staff. Nurses have a special place in heaven. We are pioneers. Be well & best wishes.

Rose

JB217 posted:
tallcanuk posted:

Only 26 years so far. Hope it goes the distance

That's great John!  hope for 26 more! what has worked for you??

Thanks. I've only had a few issues over the years with either pouchitis or mild food poisoning that caused me to seek medical help. Cipro worked for me in those cases, and now I keep a bottle of it with me if I travel, just in case. Haven't needed it in probably 10 years or so.

I do have quite frequent bathroom visits, and have noticed the past couple years I'm having to empty my pouch more frequently. I'm probably around 10 times per 24 hours, some days more.

I don't do anything special, and not on any medications currently. I haven't tried Imodium in years, as it never really helped me much. Haven't tried Metamucil for a very long time either.

I can eat pretty much anything I want to, but know certain things will bother me. I try avoid too many nuts at one time, some tomato sauces bother me, and am careful with other seeds and skins. Chocolate goes right through, but worth the hassle sometimes

Lately I have been thinking of trying something again, as my bathroom visits seem to be increasing. Might give Metamucil a try again. I used it for a few years when I first had my pouch.

I'm curious too about the prolonged use of Cipro reported by Philly-Brad. Antibiotics can wreak havoc on your gut and digestion. Even though it has helped me get over a period of diarrhea,  it also messes up my gut and takes me a while to get things settled after taking it. I can't imagine taking it long term.

I do have issues at night when I don't wake up. I need to get up at least once to empty, but sometimes sleep through and end up with some leakage. Now I also have sleep apnea and have to use a CPAP machine. I think some air from it  causes me to bloat and aggravates the need to empty.

Overall, I happy with the pouch and not having an ostomy bag.

 

The first several years after my pouch surgery in 1985, I had a number of pouchitis bouts. At the time I took Bactrim but after a while found that didn’t work anymore. Then I went onto flagyl but that caused numbness in my fingers so I discontinued it. I also tried VSL but it did not work for me at all.

Then I went on cipro (500mg - not 250mg as I mistakenly previously stated) once per day and it is a low enough dose to keep the bad bacteria in check while not upsetting my stomach at all. Over the past 20 years my pouchitis has been very rare and when I do get it - it responds immediately to a Zithpack. I have maybe 5 bm per day. Not sure if others would respond to cipro as I have but that’s where I am.

 

Like Brad-Philly I have taken cipro and other antibiotics for many years, in my case since 1995. At that time I asked my gastroenterologist if there was any studies on long term antibiotic use and he said “you are the Guinea Pig.” 23 years later I can report it’s been just fine. The key thing is to rotate antibiotics. The only times I ever ran into problems like yeast infections etc. was from being on Cipro too long without rotating off onto Xifaxin or Augmentin or Tinidazole. Cipro is very effective at killing all the bacteria in your skin and it sets you up for yeast infections and warts etc. if you don’t rotate. Other than that have had no issues. 

Pouch is turning 32 and it's been a great, ahem, run.

I eat and drink whatever I want, and while my stool might loosen as a result, it is not uncontrollable nor is the burn usually unbearable.  And, psychologically, I rationalize those little downturns with the knowledge that my pouch is not controlling me.

I've had a few bouts with pouchitis but it generally clears by itself after a few days, or if not, it responds to a Z-Pak like others have stated.  There's been narrowing, at times, where the bottom of the pouch connects to my anal ring but the occasional appointments with me GI keep those at bay.

Yes, every case is different and this board tends to showcase 'issues' rather than success stories, but I would not have it any other way.

Michael

JB217 posted:

looking for any 30 year pouchers, any out there?  Would love to hear your stories, good or bad.  What has worked for you, what foods are triggers?  My opinion is that sine the  J Pouch is made from small intestine, if you don't abuse it too bad it shouldn't wear down.  The pouch tissue should hold up bearing a good quality of life.....hopefully some stories out there support this.

any Humira users after surgery???

 

I am going on my 34 year! Had about 1-2 blockages a year for a long time. Then 15 then had scar tissue taken out. It’s been 15 years. Now problems with scar tissue. I can’t eat meat  salads. Vegetables. Only bread cereal and cheese and milk with protein. Overall I am still a teacher and a coach for 41 years. Got 4 boys that keep me going!!!  Pouch is ok. Got a hernia is all from hitting baseballs to my teams.  Good luck to all. 

I took Cipro and other meds for 25 years on and off. I got neuropathy and can’t feel my legs or feet. I still take pain meds and nausea meds but overall I am ok. If I get blockages I use hot water bottles and lay upside down on a couch and massage the pain area. 

Hello all, I'm new to the forum and I see that I've missed a lot of support by not knowing about it. I had my J-pouch surgery 24 years ago at Oschner hospital in New Orleans. Prednisone was the only drug which controlled my UC and I had my surgery to get off of the prednisone. Now that I'm in my 60s, I can tell that I'm going to the bathroom more often and I'm having more problems with gas and an acidic stool, which really burns my rectum. I will take Cipro once a day for several days and my symptoms will improve. As far as I know, I haven't had problems with pouchitis.  I've considered having my pouch removed and going with an ileostomy but I'm really undecided on what to do. I live 3 1/2 hours away from the doctors I need to be seeing and the local gastrointestinal doctors around east MS aren't very helpful. Anyway, its great to have folks to talk to now who understand what I'm talking about. 

Scott

Welcome, ScottV. It sounds like you might be dealing with chronic pouchitis. Even if not, there are certainly some things you can do that are much easier than pouch removal that might fix you right up, or at least help. Have you tried a strong probiotic? If you can afford it (and/or get it covered by insurance) VSL #3 DS helps some of us keep pouchitis symptoms at bay. Also, have you tried soluble fiber, like Metamucil? If these don’t do the job, you might be best staying on Cipro, at the lowest dose that works. I’ve been on it for years now, and it’s enabled me to have a normal (great, actually) life.

Once you have a relationship with a good GI a lot of things can be managed by phone or email. Good luck!

Thanks for your advise Scott. I'll talk to my doctor about the probiotics and the pouchitis I may be having. I'm definitely not looking forward to having another major surgery. So if I can make life a little easier with the J-pouch, that would be my best route. 

I'm only in year two of my pouch, but I've met someone who had her pouch for over 30 years and she has had no issues or quality of life concerns. It sounded like the pouch was barely something she thinks about and she has only one or two foods she avoids. No pouchitis or other issues. It was very encouraging to me to hear how much of a non-issue having a pouch was for her.

On the question that people sometimes raise about whether the pouch will "wear out" -- my GI has told me that it's no different than any other part of your body and that it doesn't wear out in the way that I was thinking -- like a piece of machinery.  

I have had my pouch 33 years. I have had the good as well as the bad. I was told by doctors that i am the 13 person and the 1st female to have this type of surgery. In fact the ostomy nurse told me there was no such thing as a reversal. I had asn acute onset of UC and a toxic megacolon which usally happens to men. I have had my pouch re-stapled due to it falling down. I have all the sasme food triggers as everyone else. I had joined yhe crones and colitis groups but they had no idea of the issues i was having. Then i saw this group. I know you all understand. My current issue is sudden evacuation before i can get into a restroom. Mainly when walking. But it happens at other times as well. Anyone else have this problem? Curious

I am 31 and a half years! My pouch has been very good to me! No pouchitis and one surgery 11 years ago for obstruction from  adhesions. Resection wasn’t necessary.  I was hospitalized one additional time (while on vacation in Amsterdam) and that obstruction  resolved. I had a c section 28 years ago too!  I am a bit overweight for me right now. I eat whatever I want!!! Too much of it ! 

My issue of late is leakage at night . It’s a bummer ... I never sleep through , and if I’m in a deep sleep  (rarely) there always seems to be lots of  leakage. Started wearing a pad now... I see here lots of people take lots of meds to slow things down . I’m terrifying of obstructing from meds... any suggestions would be appreciated . 

Only 26 years here, but I've had mine most of my life. Started Humira last year and it cleared up my pouchitis from hell, but cuffitis is currently a problem. Things really started to improve for my pouch once I switched to an IBD subspecialist. My previous GI, who mostly dealt with GERD and IBS patients, was in way over her head with me.

SuzieQ423 posted:

I am 31 and a half years! My pouch has been very good to me! No pouchitis and one surgery 11 years ago for obstruction from  adhesions. Resection wasn’t necessary.  I was hospitalized one additional time (while on vacation in Amsterdam) and that obstruction  resolved. I had a c section 28 years ago too!  I am a bit overweight for me right now. I eat whatever I want!!! Too much of it ! 

My issue of late is leakage at night . It’s a bummer ... I never sleep through , and if I’m in a deep sleep  (rarely) there always seems to be lots of  leakage. Started wearing a pad now... I see here lots of people take lots of meds to slow things down . I’m terrifying of obstructing from meds... any suggestions would be appreciated . 

 

Hi all I have had my j-pouch for 26 years. I had a severe case of UC for 10 years and begged the doctor for surgery because the pain was so bad. After the follow-up to my j-pouch surgery in 1992 the surgeon noticed that I had a hernia at my stomach site and suggested adding mesh but I declined. Then in 2011 I had an obstruction due to the hernia! So I was forced to have surgery again. This is also when I learned why I could never get pregnant after naturally trying then going through three IVF treatments. With the 1st surgery and moving “things”around my fallopian tubes/body developed a fluid that was a natural birth control that did not allow the fertilize egg adhere to the uterus. They asked if I wanted to correct it and I declined.

No special diet I have learned I cannot eat kale super green salad because it has a lot of raw roughage type vegetables. But other than that I eat whatever. Love popcorn can eat a large by myself and no issues. Of course ice cream, NyQuil (or cold meds) and fruit will cause me to have “milkshake” like poop if not pure liquid, but no drainage or nighttime seeping. I drink my share of whiskey, bourbon, tequila and/or vodka and no issues. 

Yes my stomach does make strange sounds at times but have started back taking VSL#3, take digestive enzymes as needed, dicyclomine to help with the GI scar tissue spasms/cramps, and an awesome liquid vitamin, intraMaxx since my body doesn’t absorb capsules/tablets after the surgery.

Every now and then I may get pouchitis now that I know what it is but it has decreased with the VSL. I also have a  sigmoidoscopy procedure to check my pouch every two years.

My biggest complaint is the lopsided stomach. I hate it but there does not seem to be a clear answer to what is happening to cause one side to be larger than the other. Maybe lymphdema or something?  I also would love to have a hysterectomy but the one doctor I spoke to basically told me he was afraid to do the surgery especially since I have a lot of adhesions from my surgeries.

HI! My original jPouch surgery was in 1990... 28 yrs ago. I had blockages, recurring abscessed fistulas and poutchitis. My surgeries were done at Mayo Clinic in Rochester and thankfully for the past nearly 30 yrs I've been able to see the surgeon who did my original surgeries. I've been back over the years and early on they determined my pouch was only emptying about 25-30%. I have a pretty "hard plastic" catheter which I use in the shower.  TMI here but I put the catheter in my rectum, into my Jpouch. I  add a big syringe of water (around 60 CC's) to the end of the tube....Immediately my pouch empties like crazy. I keep doing this until the water coming out of the catheter is clear. It is honestly like Heaven to get out of the shower and be completely clear/clean.  It was painful when I wasn't able to empty my pouch prior to doing this.  Everything drains right down the shower drain.  If any of you have issues with your pouch emptying all the way (or honestly, even if you don't) this has been a life saver for me. I had a lot of stricture issues and the added bonus is that the catheter

helps keep my Pouch opening at a "good size." After years of hospitalizations and countless surgeries, Azathioprine has worked for me so I am very lucky.  My brother ended up with UC and is on Remicade infusions. He has not had any issues since going on the infusions! So, all in all, we are both very fortunate at this point.  I was on Cipro for years for Poutchitis but my GI here in Dallas told me to get off of it as it has some rough side effects? I should mention that I got the catheter through the Ostomy nurse in Rochester.  They do have smaller, more "rubbery" catheters you can use but I have used the same catheter for a good 20 years now.  I put it in bleach overnight every so often to keep it as clean as possible.  Sorry for the novel here but hoping the catheter process I use each morning in the shower will help someone out there. It only takes minutes to do the process. Super easy. 

I also have a lot of "accidents" at night and at work. I've worn an overnight sized maxi pad 24/7 for the past several years. It is a bummer but at least I can work. I have waterproof square pads which i put on my bed each night to protect mattress.  I am curious about the lop-sided stomach too. I have had 3 iliestomoies 2 on 1 side and 1 on the other so always assumed the scar tissue was worse on the one side.  In one of my scans they noted a hernia (about 5 yrs back) but I haven't followed up with this. They didn't seem real concerned at the time.  My stomach is really firm/hard and one side is bigger than the other. I have a follow up with my GI soon and will ask about the hernia.  It seems like doctors don't want to go anywhere near someone with scar tissue like we all have.  

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