Skip to main content

Hi All,

I am just looking for some positive stories and experiences from those that have a successful JPouch. I know the terrible but I would love to hear from some folks who feel better, have a great quality of life and cause for celebration. I am still awaiting my takedown, and although I am not getting along with my stoma at all, the stories posted scare to heck out of me. Can anyone tell me something great that happened to them or how happy they are? I am hoping this will make my life better and perhaps allow my husband and I a fresh, hospital free, start and maybe another child in the future. Any good news will be much appreciated.
Original Post

Replies sorted oldest to newest

Jess,
I have a k pouch, but a pouch is still a pouch, just a different exit strategy... my life is so much better than the one that I was living pre-pouch.
It has been 33+yrs but I still remember the hell pre-pouch, the isolation and horrors...since then, I moved to Paris, went to school here, lived my life,date, worked and got married...in a nutshell, I had a real, live, life. 20 wonderful years before my k pouch valve needed some fixin...but that is another story.
You will hear horror stories, success stories and everything in between but the one constant is that life is different and that there is an adaptation period...you will probably have some rough moments while your body gets accustomed to its new anatomy and new functions and you will hopefully come here for some guidance and help...But then, you will most likely put surgery behind you (so sorry for the pun) and just live your life happily.
Don't expect it to be an overnight success but a gradual improvement but it will improve.
Hope this helps...I am a realistic optimist.
Sharon
I'm a success, an 11 year jpoucher. I have done many long distance, 100-200 mile, hikes abroad; have traveled to the Middle East, South America, SE Asia, and Europe with my jpouch. I have hiked in and out of the Grand Canyon, in 107 degree heat, hiked and backpacked extensively in the California Sierras. I work full time, exercise daily, and love my jpouch for the freedom, increased health, and predictability it has afforded me.

Sue Big Grin
I'm 4 months post takedown and I'm very happy with my pouch. The time in between my 2 surgeries sucked and I was convinced I'd never have my life back and living with a j pouch would have many problems. I exercise, I eat everything, work part time, have 3 active kids, do everything I want, I'm planning my sons Bar-Mitzvah-it's in 1 month from today. I worried so much about this- not being well for it. I'm good to go. Good luck
I had my surgery in 1995, after a 6 month flare that was crippling me and draining me of blood. My health isn't perfect. I get occasional pouchitis and cuffitis, have enteropathic arthritis, and a few other chronic health issues.

But, still I was able to volunteer daily in my kids' schools, was active in the PTA, work part time, hike the national parks, swim, and travel. We just got back from a vigorous two week trip in Italy, with lots of walking, and I didn't need the bathroom any more than the rest of my family.

Yes, the j-pouch is not the same as your colon when it was healthy, but for most of us, we manage to adapt and figure out how to live well. You don't have to let this define you. Certainly, for some it is a failure, but they are a very small minority.

Jan Smiler
Last edited by Jan Dollar
You have come to a support board and cannot reasonably expect to see predominantly positive stories about perfect results. The people who have perfect results are not here. The people who are here have had imperfect results to some degree, for the most part. I have had a J Pouch 20 years and it's been a pretty good 20 years compared to the 20 years of UC that came before it. But it has not been perfect. The question is if I could go back in time and do it all over again, would I? The answer is I would have done it much sooner.
I am a Struggling Newbie, so take my posts with a grain of salt! Big Grin Ask me in a couple years and my outlook on my j-pouch might be quite different.

So yes... on this board you shall find different types of posters. I hereby name them as follows:

1. Struggling Newbies (Like Me).
2. In-Betweeners who are deciding if/when to get surgery.
3. Occasional Enquirers that post a few times a year or less to ask for help on random issues or topics they may encounter. (Ex: Traveling to Exotic Island Now With My Shiny J-Pouch. Any Tips?)
4. Superheros - All of us who are registered on this site (active or inactive) who are struggling with IBD.
4. Super-Duper-Heros - Wonderfully amazing and strong people (much stronger than me) who have unique or unfortunate struggles still. Whether its Crohns, surgical issues, etc. (They don't represent the majority, though).
5. One or two Trolls that like to shake things up for fun Big Grin.
6. Random Spambots we ignore and Jan kindly deletes.
7. Awesome Veterans that stick around to help all of the above posters.

Big Grin
Jess,
I too am wondering about the positive results of j-pouchers. I am supposed to have my j-pouch surgery in January, but I am seriously considering keeping the ileostomy permanently. With the ileostomy, I know what to expect, and there are far fewer unknowns. The j-pouch stories all seem so negative. I know that the people that are doing well aren't posting here, but can anyone give me an idea of how long to reasonably expect the recovery time to be?
Will it be months before I have good control of my bowels, or will it be years? I am concerned that the wrong decision will put my family and I in the poor house if I am out of work too long. Any advice would be greatly appreciated.
I hate saying this because it seems like such a cop-out, but as with many things associated with this surgery, the results vary.

For myself, I fully anticipated dealing with incontinence post op, particularly at night, which is the more common issue, as opposed to daytime incontinence...even bought adult diapers to wear to bed. Never needed them, and wound up donating them. I have had minor leakage when I have my occasional pouchitis, never any full blown incontinence. Within a week or two of surgery I could delay a bowel movement 2 hours or more. Within a couple of months, I went on a road trip of 6 hours, and did not need to stop any sooner than my car mates.

The main common complications are two-fold:
1. Those related to the immediate post op period, such as bleeding, obstructions, infection, blood clots, etc. Once you get past the first few weeks, most people do not revisit those (but some do have delayed or prolonged surgery related complications).

2. Those related to pouch adaptation and lifestyle adjustment to the neo-rectum. A few people sail through this and are happy campers immediately (especially those who do not have IBD). Most people have difficulty with loose stools, frequency, and even some urgency/cramping for the first 4-12 weeks. Some surgeons tend to downplay this, and the patient winds up feeling blind-sighted by it.

Early on, most of us will need to tinker with diet, avoiding most roughage, spicy foods, gas formers, sweets, alcohol, caffeine, etc, until the pouch has time to adapt and the gut adjust to the lack of a colon. Gradually, the body "knows" what it needs to do, and the small bowel learns to absorb water better. You can take bowel slowers and fiber supplements to slow and thicken output. Some surgeons are more liberal about this than others. Personally, if my surgeon told me I should wait to use them, I would have told him that HE should come over and clench my cheeks and keep the stool from trying to squirt out!! Fortunately, he had me on Imodium before discharge.

Unfortunately, the output is caustic and butt burn is common. That is why using a barrier cream right off the bat as a preventative is important. Butt burn is easier to prevent than treat. So slather on that diaper rash cream early and often, and you will not regret it.

Only a very small percentage never truly adapt and continue to be bowel cripples. Most often it is due to chronic pouchitis or Crohn's of the pouch. But, even those with those diagnoses usually find an acceptable functional level. Only about 10% wind up with failure and have their pouch decommissioned.

There is nothing wrong with choosing to stick with the ileostomy. Most people who do are just as satisfied as those who choose the j-pouch.

It is not all rainbows and unicorns, but it is not the end of the world either (at least 90% of the time)!

Hope for the best, but be prepared for the worst.

Jan Smiler
Jess,

I was just involved in a quality of life study for people with the j pouch. The results have not been published yet, but when I spoke to the researcher he reported that he was surprised that the quality of life ratings were so high. I have never regretted my j pouch, everything has been a fun adventure. I do everything that someone else my age should do and there is never anything that I haven't done because of my pouch (everything can be done, just maybe a little differently). Be positive and optimistic Smiler
Stuck in the Middle.....I chose to keep my temporary ileostomy for a full year and was very, very reluctant to proceed with the takedown. While not ideal, my ileostomy gave me back my life. The unknown was terrifying. My son convinced me to go ahead with the takedown telling me that if I didn't like the results I could always go back to an ileostomy. I actually cried on the O.R. table and my surgeon told me I could still change my mind. Imagine that! Well, that was over ten years ago. I was fortunate in that I had a simple recovery from having the takedown and rarely even think about having a J- pouch! It is that good!

Add Reply

Post
Copyright © 2019 The J-Pouch Group. All rights reserved.
×
×
×
×
Link copied to your clipboard.
×