Hi! All

I am wondering what the present health is of all of the old Jpouchers, anyone with a Jpouch over 10 years.

• 1.How old is your pouch?
• 2.What disease caused the need for surgery?
• 3.How often do you get pouchitis?
• 4.What type of diet are you on, or what foods do you avoid?
• 5.What medications do you need?
• 6.How often do you get scoped?
• 7.How often do you use the bathroom?
• 8.Do you have any related medical issues?
• 9.Do you use probiotics?
• 10.Do you drink alcohol, if so what agrees and disagrees with you?

This message has been edited. Last edited by: BarbieG,

For myself:
1.14.5 years
2.UC for 9 years; confirmed UC with Prometheus test in Dec. 08
3.last 5 years, about 4 times a year, most recently, last year and a half, almost every other month
4.smooth, low residue foods, avoid any high fiber foods
5.Pouchitis-Xifaxan & Canasa supp.(this is new for me), Pain-Tramadol & Percocet, Spasms-Librax, Sleep & Mood-Elavil, Vit.D
6.once every year or two
7.on a good day, 8 x's, bad day, 20x's
8.abcess, fistula and obstructions the 1st year after surgery; blockages are more often now, I learned the hard way to change my diet; nerve damage in hands, I believe from taking Levaquin too often
9.tried them but they became ineffective after a short dose
10.recently had a few White Russians and felt it agreed with me, this was after recovering from Pouchitis for about 3 weeks; then most recently had a couple of beers and had a great amount of pain

This message has been edited. Last edited by: BarbieG,

Hi Barbie G,
1. 9 years
2. FAP, born with, 62 now/J Pouch
3. Chronic
4. low residue, no sugar, no fiber, no roughage, easier to tell you what I can eat.
5.Daily- 8 imodium, 4 bentyl, donnatal after eating, levsin as needed. Pain- hydrocodon, liquid morphine.
6. 4 years ago, need to now.
7. After I eat 10-15, only eat 1 time daily.
8.Small bowel blockages, J pouch
9. Not yet, just now informed about
10. No alcohol at all, sugar is natural laxative.
Seeing Dr. that operated, Jan.15,09. Anemic, iron def. Vit. B-12.
pj60472007@yahoo.com Good Luck.

Hi Barbie, here's my answers:
1. 18 years
2. UC
3. Had one bout immediately after takedown, didn't have my second until 16 years later. Since that one though it comes back as soon as I stop anti-biotics.
4. my diet sounds similar to yours, but I also have celiac's disease so my diet is also gluten free.
5. pouchitis-xifaxan, pain/frequency-opium tincture, sleep-xannax
6. every year or two now, though I was less responsible about it in my teen years
7. 5-8, assuming all is well
8. from prednisone: steroid myopathy, osetoporosis, adrenal imbalances. We're not sure if celiacs is related to UC, my Cleveland Clinic doc said they're still researching that.
9. tried them but saw no change.
10. Don't really drink these days, but clear liquors never caused me problems, I get a little bit of heartburn with whiskeys but not too bad, and I can't drink beer due to the gluten free diet, and carbonation always caused me some slight discomfort.

Wow, I am a little surprised that ya'll can't eat fiber, too. It sounds like most people on this site can eat most anything. I have to say I can eat some fiberous foods like sweet potatoes or split pea soup, yes they are smooth too, but my output is way too high to be comfortable. I would rather skip those tempting foods and not have to worry about going to the bathroom all night. For the first few years I did eat more veggies & fruits, etc, except popcorn & mushrooms. I was always running to the bathroom or dealing with gas pain or a blockage, though. I learned the hard way. At least there is always pizza. I don't think I could give up eating pizza!

I know all of my blockages have been caused by eating the wrong foods. I guess there is quite a bit of adhesions that keep the food from passing through easily. I'm amazed at the people that have problems and don't change their diet to get relief. We are working with a whole new creature, AKA a Jpouch, that will need time to heal and function in a way it was not intended to do in its past "life".

Does anyone know how old the oldest Jpouch is? I think I read someone had a 24 year old one?
Good Luck this New Year!

Hi Barbie;
1. 22+yrs
2. Ulcerative colitis that started at age 12.
3. 2 or 3 confirmed cases of Pouchitis.
4. I have had my pouch so long, that I know how most
foods will affect me. I tend to stay away from fresh fruit and raw veggies because of the gas. I just choose what I want to deal with. If I feel like pasta and sauce, I know I will most likely have some butt burn. I love popcorn! Had chili for dinner last night... I don't let my pouch run my life.
5. If I have a bad day, maybe once or twice a month, I will take an immodium.
6. I used to get scoped every other year. However, recently I have started having issues with recurrent strictures that had to be dilated. While dilating, I get scoped.
7. I don't usually keep track of bathroom trips. Having said that, I have been very lucky...usually 4-7 times a day. Antibiotics tend to slow me down considerably....dang sinus infection!
8. hypothyroid. So far that's it.
9. Never even tried probiotics, was never suggested to me by MD's.
10. I enjoy an occasional glass of wine..usually a red. Margaritas are good too. Not usually an issue with alcohol.

Again, I have been very, very lucky with my j-pouch. I wish everyone could have the results that I have had and it makes me sad when I hear of people having problems with their pouches.

Hi Barbie:
1: 13 years
2. UC started 5 years before by Jpouch surgery
3. Nothing until 4 years ago, and now on average 3-4 times / year
4. No caffeine or carbonation, try to be more conscience of suguar intake, particularly while having a flare up.
5. Xifacin and Azathioprine are my regular maintenance drugs - cipro, entocort, cortizone enemas when req'd
6. once per year
7. 4-5
8. Osteopenia (from prednisone), had my first blockage earlier this week, have stricture dilation later next scheduled
9. Tried, didn't help
10. Occasional - I go periods of time when I drink regularly w/no problems and then other times seems like it irritates me? I avoid during flare ups. Wine mostly or just 1-2 beers at a time. Clear alcohol seems to be fine.

Hi Barbie:

1. 16 years
2. Ulcerative Colitis
3. Chronic but successfully treated pouchitis (antibiotic dependent)
4. Full diet
5. Currently Xifaxin, Pentasa, Donnatal, Imodium as needed, Metamucil wafers at night
6. Annual
7. 5-6 (I could slow it down further but I believe excessive anti-diarrheals promote pouchitis by making evacuation more difficult)
8. None
9. Yes, Culturelle and DanActive
10. Yes, moderate/occasional drinker, only thing I avoid is red wine (causes diarrhea and butt burn). I prefer malt liquors (like Cherish) and rum based mixed drinks

This message has been edited. Last edited by: DJBHusky,

1. 13.5 years
2. UC
3. I didn't have problems for the first many years, but now it seems to be 2-3 times a year
4. avoid popcorn like the plague, gas producing foods, too many peanuts (can block me), too much raw veggies
5. Cipro for Flares, Canasa for cuffities, this ice thing for hemorrhoids, Imodium daily, Forvia and Forbones for vitamins, iron (since my blood count tend to be borderline low)
6. about every 2-3 years
7. good day: 6 times, bad day: 12+
8. hemorrhoids
9. yes, Culturelle
10. I stay away from wines, especially red since they make me go just like grape juice does.

My pouch is only 7 years old, but i felt like sharing!

1. see above. one-step j-pouch in October 2001.
2. UC, diagnosed in 1987.
3. Pouchitis: um, always?
4. Diet- i eat everything. and often!! when i have bad pouchitis, i stick to smoothies and the gentler, kinder foods. some foods give me butt burn, butt it's a price i'm often willing to pay!
5. I had some pretty outlandish post-op complications that resulted in chronic pain from scar tissue. that said: for pain - hydrocodone and dilaudid. for pouchitis - Entorcort EC and Cipro for maintenance, and that plus Cortenema and anucort suppositories for flares. the as-needed drugs are ambien, bentyl, immodium, prilosec, ativan, and phenergen.
6. someone sees fit to look up my butt once per year
7. i use the bathroom a lot, but a girl's gotta check her hair and apply a little lip color! poo-poos are maybe 5-8 per day. i don't count!
8. not so much any more. see 5 above. it was BAAAD for awhile. but now that i've been healing and healing and healing, i'm a fairly healthy sick person!!!
9. when i remember to take the probi, i do. i don't know if they do much and they are kind of pricey.
10. i don't seem to have any issues with alcohol. i'm not a big drinker, mostly because i get The Most Ridiculous hangovers. i always have!! and frankly, if i want to feel like sh!t, i can do that without alcohol!! hahhaha. i actually think i tolerate alcohol better with the pouch than the colon!

later!
Jilly

1. 22 years old next month
2. UC 6 years before surgery
3. Chronic Pouchitis
4. I avoid acidic foods and drinks to avoid BB, fiberous and bulky foods to reduce blockage risks.
5. Cipro, lomotil
6. Scoped whenever I see my surgeon, every 5-7 years.
7. 12 times on good days and 20 or more on bad
8. Joint pain, bowel obstructions
9. Didn't realize any benefit, may not have used long enough to see any benefit.
10.Not so much, in the past beer seemed to cause frequency, BB and a noticable dehydration.

Like Jilly, I just feel like sharing my experience! Feel free to pass over me if 10+ years is a must, I only have 7!

* 1.How old is your pouch?--- 7 years, she's growin up so fast!
* 2.What disease caused the need for surgery?--- U.C.
* 3.How often do you get pouchitis?--- Depending on my diet I get it about every 3 or 4 months!
* 4.What type of diet are you on, or what foods do you avoid?--- ^^^I notice that for me bready foods tend to leave me open for pouchitis to move in... It may just be coincidence though... Bit I like to eat lots of proteins and lots of fruit and yogurt!
* 5.What medications do you need?--- The only pouch related thing that I take daily is Lomotil, I take 2-4 a day... I also take flagyl or cipro as needed for pouchitis.
* 6.How often do you get scoped?--- Once a year unless something is going on to where I need more.
* 7.How often do you use the bathroom?--- About 4-6 times a day
* 8.Do you have any related medical issues?--- I had my gallbladder removed, they said they thought it might have something to do with the surgeries but theres no real proof of that... Although I know a lot of people here have had theirs removed too.
* 9.Do you use probiotics?--- I tried it but I didnt notice it helped me... But I do eat a lot of yogurt.
* 10.Do you drink alcohol, if so what agrees and disagrees with you?--- Occasionally, and so far I havent found anything that bothered me as long as it was in moderation.


Ok, thats me!

1. 9 years
2. UC for 1 year
3. I have had 2 cases. One was about 2 years into my pouch. Flagyl cleared it right up. The second came this past summer. Took Cipro. cleared it up, but the pouchitis came back within 3 days. Started a series of antibiotics -tried Flagyl, but seemed to make me sicker, than Tindamax - couldn't really tell. Once I stopped the antibiotics it seemed to go away -- it was really weird.
4. I try to avoid sugar
5. I take Lactulose
6. Rarely - maybe once every 2-3 years
7. 6-7 times a day
8. No
9. Drink Kefir
10. Yes, I drink on occasion. No problems

Overall, I have to say I am extremely pleased with my pouch. I do worry that as the pouch gets older it seems like the pouchitis epsisodes increase. Seems like everyone who has posted has frequent pouchitis. My Doc seems to think Lactulose is the best way to keep pouchitis in remission.

* 1.How old is your pouch? almost 16 years
* 2.What disease caused the need for surgery? UC for 4.5 years prior, couldn't wean off steroids
* 3.How often do you get pouchitis? My pouch seems to always have some inflammation
* 4.What type of diet are you on, or what foods do you avoid? Fresh fruits and veggies irritate me, avoid lactose when I can (except in full fat ice cream!)
* 5.What medications do you need? on mesalamine enema right now, have been on lots of stuff - Cipro, Flagyl, Xiafaxan, fish oil enema at one time or another
* 6.How often do you get scoped? varies from every year to every 4 years
* 7.How often do you use the bathroom? 8+ times a day
* 8.Do you have any related medical issues? inflammatory lesion somewhere near anus that will be biopsied deeper and maybe removed, chronic inflamation (indeterminate on Crohn's test), tested positive for multiple fibromyalgia tender points in a study on UC patients
* 9.Do you use probiotics? Not currently, have tried lots of different ones
* 10.Do you drink alcohol, if so what agrees and disagrees with you? yes - I will drink red wine to help my cholesterol and sometimes white - they do relax me and make it more likely to have nighttime incontinence but don't otherwise bother me usually, beer will bother me and I love flavored martinis but it's dangerous for me to drink them!

SueLynn

1.How old is your pouch? 10 years
2.What disease? u/c diagnosed three weeks then emergency surgery--probably had uc for a few years undiagnosed.
3.How often pouchitis? A few times in the first few years, haven't had it for the past five or so years.
4.Diet? sort of plain but that is my taste, small meals, eat most fruits peeled, eat salads, avoid mushrooms, spices bother me--no too many restrictions
5. No medications
6.How often scoped? About every year or two
7. How often do you use bathroom? about 8 or 9times a day.
8. A bit of a stricture problem, tendency toward iron deficiency every two years or so and need infusions then but no other health issues.
9. never tried probiotics
10.Drink a glass of wine 2 or 3 times a week. Does not cause any issues. Don't know about effects of hard liquor or beer because I don't like them but carbonated products bother me.