Long term J-pouchers

I have had my J Pouch 20 years and have had no leaks, but I did have surgical revisions at the 6 and 8 year marks to eliminate a "septum" that developed in the pouch. I am not sure if leaks are due to age. I think they are due to other issues.

My pouch is closing in on it's 23rd year and it's done quite well. No additional surgeries or revisions. I have a friend who has had her pouch since 1985. She has to get regular dilations but she is doing well.

I don't think there is an answer for longevity. But I fully expect my j-pouch to last as long as I do.

kathy

Well said, Kathy. I am a 16 year veteran and have had no additional surgeries/revisions/ or any of the other big issues that others have. I too feel that my pouch will last as long as I do.

My sister has had her j pouch for 21 years now. Knocking wood, she hasn't had any issues at all.

Thirteen years with a revision in 12th year.

Great question and the best answers ever. Good to know that i have no need to worry.
I'm already trucking along with no issues whatsoever at 3 weeks post takedown. Hope it continues for at least 50 years!!

Are there any long-term j-pouchers who take VSL#3. I am starting to wonder if my problems started with the VSL#3.

I have had my J-Pouch since April, 1994 so I will be approaching 19 years.

Rocket

I've had my J-pouch for 15 1/2 yrs. Until this year I had been hospitalized a couple of times for dehydration, but it's happened 3 times this year. The intern was kind to point out I am a little older, 54, and not able to easily recover from getting dehydrated. I'm trying different things but I just seem to have a delicate balance with maintaining my hydration.

szeromambo i do not think vsl#3 would have caused your problems..it is adding good bacteria and if you have reactions to it (which is definetly possible)upon stopping it they should go away..when i tried it years ago it made me worse and i just could not get to even i bag..haven`t tried it since..

rebe

Have had my jpouch for 25 years. other than a couple of surgeries for dehydration and scar tissue removal. I havent had any problems other than the normal butt burn issues.

I believe I'm the oldest j pouch here: 31 years and going strong. Had a revision after 5 years to shorten the bit just above the rectum. My surgeon was Sir Alan Parks of St. Marks Hospital in London and he was the Daddy of ileo-rectal pouches. I've had a few issues, you can read about them in my posts. Good Luck! At the 7 year mark I discovered orabase protective pasted and have avoided butt burn since.

I had mine done in 1986 at UCLA. I now am looking at removal as it's done it's dash. It's been good to me though, causing no problems until a few years ago, I've sailed across oceans and done things I never thought I could. So thank you j pouch and dr fonkalsrud!!

21 years with no subsequent surgeries.

Hi Everyone.
I have had my s pouch since late 1981.
Done in Sydney Australia by a surgeon who was a friend of Sir Allan Parkes,now almost 33 years and so far so good, not too many problems but I try and look after myself.
I think one of the secrets to a sucessfull pouch is to watch what you eat and drink plenty of water.
Regards.
John.

Mine is 23, but I developed chronic pouchitis about 3 years ago. Thankfully I am well managed on meds the past year and a half(antibiotics, entocort, immuran) for now!

My dad had his surgery in 1985 or so, when the procedure was pretty much experimental. I believe his was only the 3rd or 4th done in Canada. As far as I know, he's never had an issue with it. Knock wood that I am the same (it's been almost 9 months).

22 years...unfortunately I am having it removed on 9/22 as I developed Crohns around 2008...all meds have failed...stricture at anastomoses, Crohns in pouch and fissures...I had a good ride and I'm devastated over losing it but it's time to move on with my life...no regrets though...jpouch gave me a good life while it lasted...

I had my j pouch done in 1986 and have started to have some problems.  I am going to look into having a j pouch redo.  Does any one have advise as to where I should go.  My original surgeon retired years ago.

24 years.

Pouch is honestly good. Developed a perianal fistula, and have occasionally needed dilations of the outlet in the last 2 years, but pretty much still trucking otherwise.

Had my pouch for 32 years. Lots of dilations. Had adhesions take out. Had a fistula and abscess.
30 Blockages with ER Time. About
50 I stopped with hot water bottle laying upside down and massage.
Still coaching and teaching. Now lots of joint problems with arthritis.
Keeping my pouch long as I can!!!!

I've had mine for about 15 years now. 1st couple of years I had pouchitis but after that, it's been good! I eat whatever and whenever I want. Spicy food, nuts, seafood, alcohol, sweets, whatever. I also workout regularly and take vitamins and protein shakes. So far it's been good to me

Hi, I don't come here often...it's been a few years. My pouch is 24 1/2 years old. Pretty much been ok and I attribute it to daily psyllium husk, a clean diet and daily exercise including yoga. I think completely emptying the pouch keeps pouchitis and other issues at bay. This is done with psyllium. Or you can take Metamucil.

 

Be well everyone.

32 years and counting.  3 episodes of pouchitis but consider that not too bad.  Hoping for continued good health.  Been able to hold down a career as an airline pilot for the last 20 years.  Has not been an easy road but has made me a stronger person thanks to God's help.  Good health to all!