I CLEANED UP MY DIET and have had NO pouch infections for three years.  I used to have infections chronically, had to be on Cipro for years which ripped up my stomach and small intestine.  I basically decided to try to knock out so many prescriptions and go more natural.  I eat mostly organic food or at least NO hormones, no antibiotics in my meat.  I t r y to buy non-genetically modified foods.  I would say going gluten free was the final clincher for me to have no infections in my pouch.  I do take a nutritional drink and use pro biotic capsules.  Tablets go straight through and don't get digested.  Use B supplements, rice protein powder with good fruit in the a.m.   I have gone from 8 prescription drugs down to one for asthma.  I have just s started methotrexate for Rheumatoid arthritis whIch also has benefit fir frequent dumping of my pouch.

My J Pouch has been a 100% success for the past 3 years. I never want to go back. Hello New Life!!

I would rather die than go back to an iliostomy

And I would also like to 2nd the notion of a diet specialist for those who have troubles. The itchy burning butt pain went away once I stopped eating irritable foods. So did most my other symptoms.

Baggage is the worst. Especially if it's hanging off of you collecting s**t .

 2 years with the illeo was definitely humbling, but I'm already a humble person so, really, it was just frantically depressing . Worst time of my life, uncomfortable in ways I never thought possible. Worse than any pouchitis and incontinence I have had in the 2.5yrs j pouching.

I just hope I can stop pooping in my sleep long enough to find a good man or 2 in my life before the threat of the bag ever returns to me . Seriously.  (and why is #2 the magic number in this post?? Coincidence ...? )

 

 

I have had a jpouch for 16 years and had pouchitis for all 16 years.  My Gastroentronologist has wanted me to go back many times but I just can't make myself.  I had an ileostomy for 6 months and suffered almost every day with skin irritation under the pouch.  Hard to keep a pouch attached to weepy rashed skin.  I'd rather deal with the issues that come with the pouchitis unless I get so sick I have no choice.

 

I had such a hard time adjusting after take-down I seriously considered it. I was going 15-20 times a day and had horrible butt burn. Over time though, it gets better and you adjust. Diet, meds, ointment, etc. I would if I had to, but as it is, I would much rather keep it. Going to the bathroom often and some occasional discomfort and minor issues is much better compared to the bag...

I went so far as to get some samples and I wore an empty one around for a couple of days! But then my doc tried a new drug combination and I finally got rid of my constant, 12-year struggle with constant fecal incontinence! It's so worth working out bugs and kinks first. The. You gotta know what's best for YOU.

I had a one stage surgery done in 2011 to create my pouch...so no clue what it's like to have a bag and it scares the crop out of me even thinking of it. I have pouchitis, but I take antibiotics to handle it.  I'll continue that.

I'm interested what you wrote about the subdural hematoma. I've wondered if that could happen but my GP blew it off. Guess I should find a new specialist since my Gastro has passed away.

I've had my jpouch for 5 yrs, wouldn't ever think about going back. With a few exceptions. I Feel like I live a pretty normal life.

This is a fascinating discussion. Prevailing opinion here is that people want to keep their pouches, regardless of what it takes. Some woman said she has had her pouch for 22 years and had no problems. I didn't even know people like you existed. I figured everyone has some complication from takedown. Meanwhile, I posted a topic in forums about this same subject and several people (albeit a much smaller sample) responded that they not only had reversal done but were sorry they had waited so long.  And check out this post from that thread: "I hardcore terrible cuffitis and fistula problems and eventually a Crohn's diagnosis.  I too was on Remicade. Long story short, I had my 15 year old pouch removed and a perm. ileo. in April 2014.  I'm doing amazingly well!  I agonized over the decision for YEARS.  For me, it's the best decision as the pouch and cuff are gone, so are any pills, pain and doctor's appts.  God is so good!" If nothing else, this all shows the breadth and depth of what people experience dealing with ulcerative colitis. 

I have had mine 6 years and would never think about going back. I have had a few struggles but they were short lived and caused by poor dietary choices. For anyone struggling I would suggest working with a nutritionist. 

I have had my pouch for 6 years and I really can't say that I've had any problems with it other than those I have self inflicted. Hopefully as I get a little older and perhaps a little smarter I will take better care of my pouch so it will last me the duration. I have it checked by the surgeon every 2 years and so far everything seems to be working as its supposed to. (Perhaps a silencer for the gas would be a useful add on)!

My 9 year pouch has been dysfunctional since day one. No matter what I do I can't empty it without the use of a laxative. I take lactulose after each meal to help me poop. I also have trouble controlling pouchitis and don't know what to take for that anymore either. My GI has given up on me and referred me to a surgeon for an ileostomy but I really don't want to go back to the it but feel I may be forced to soon.

I am very happy after 34 years with my pouch!

I cannot imagine going back to an ileostomy.  For the three months I had mine I was in misery.  We were never able to find a wafer that did not leave my skin raw and bleeding, and because the site was so compromised the wafers would not stay attached Every change was agony.  I still have scars.
Nope, nada, never, noooo!

that option was also told to me  something i need to have a serious think about being only 18 years old and having to put up with the nasty effects from ulcerative colitis since the age of 6 , but new research is being investigated even as we speak there is a new one coming out soon for crohns disease ,  a 3 combined antibiotic therapy either already out or about to , so i think i will hang in there for a bit longer and see if a treatment option comes my way or if my J pouch will settle down on its own either way i do believe i will not have my pouch removed unless every single treatment was exhausted first .

The first year I thought about it but then things got much better

I have now had my J-Pouch for 25 years, 10 years in I acquired my first fistula and now have a total of 5. 2 bigger, 3 small. They are a pain in the butt and need a lot of care. Like most people commenting, I would not want to return to an ileostomy, even with my fistulas. I did do 8 months of remicade, 5 of those at a double dose - for some reason they thought the fistulas would close. I will not do that again or Humira as advised - these drugs have too many side effects that I have had to deal with.

The only reason why I was thinking about an ileostomy is at an overall check up and seeing if any new progress was happening with Crohn's at Cleveland Clinic, they had informed me of something new that they were seeing with long term Pouchers - Cancer in the pouch. Very aggressive, very non treatable. When I inquire about an ileostomy (which would be a way to avoid cancer), I'm told that they would not do it. Very complicated and the recovery is grueling.  Now the cancer fear is always in the back of my mind.

I've had my jpouch for 16 years and have never had any real problems. 

 

Had the reversal in 1988 one year after ileostomy. At first wished I did not go for the reversal as pain of closure of ileostomy was awful but I'm sure I am the exception to the rule here. Overall very pleased but just have to watch what I eat. In the 28 years I have had, I have only has 1-2 bad stomach aches. No idea how long these ppunches are supposed to last but I think mine was a W or S pouch... Not sure.

I continue to have pouchitis / cuffitis.  I have had my j-pouch for over a year, and it has definitely been a roller coaster.  I'm currently on weekly injections of Humira and I've been on prednisone since April.  Every time I try to tapper off the prednisone, I go into flare mode.