Does anyone know when the first j-pouch was done? Or how those first pouchers are doing now? Has anyone had theirs 15+ years?

Do j-pouches age well? What about when we are 80 or 90 years old (cause I sure plan on being at least that old one day!) - is there any information on aging with a j-pouch?

The j-pouch procedure as it is done today has been around since the mid 1980s, with some technological advances since then. Here are a couple of links to articles you may find helpful:

http://cms.clevelandclinic.org/digestivedisease/documents/POG_2003_WInter.pdf

http://www.ncbi.nlm.nih.gov/pubmed/15658141?ordinalpos=...RVAbstractPlusDrugs1

Like you, I am planning on doing well for a very long time, even if I do have other issues.

Jan

My aunt had her's done either in the late 80's or early 90's. I know I was in high school at the time and I graduated in 1991. She is doing great and has had no complications. She will be 70 this year. Her son in law has had his for 3 years now with little problems. I got stuck with an ostomy-but that's ok too!

All three of us are not blood related-wierd huh?!

Erica

This publication followed j-pouch patients for up to 20 years:

http://www.ncbi.nlm.nih.gov/pubmed/17225210?ordinalpos=...anel.Pubmed_RVDocSum

It's a bit disturbing that the symptoms reported by patients seem to get
worse over time. Maybe they get used to living with frequent trips
to the bathroom, etc., and so they eat more foods that can cause
problems and/or are less willing to keep taking meds (lomotil, VSL#3, etc.)
to minimize their symptoms over a long period of time.

I've had my pouch for just about 17 years now. It has always performed only
so-so, but is WAY better than having UC that was not well controlled,
or even the temporary ilieostomy. The past 10 years have been the
best, with no pouchitis and few other problems, despite my eating a lot
of foods on the difficult list (chocolate, tomato sauce, milk, nuts, beans).
I do not take any medications besides a wimpy probiotic and beano.

My pouch is 20. There have been several posts and threads following this topic, click on find and uncheck the box that says this forum only and type in a few words, you will find the thread. I don't know how to link you to it.
I know I was one of the first in the early years mid 80's, there were a few in the early 80's.
I always wonder how long this will last.
I get surveys from cleveland clinic on occasion.
I do not think much about the future, I eat cautiously and have never had pouchitis or other problems. I take no meds. We all have different outcomes.

My pouch is now 22yrs old. I've had great results! I have 3-6 bathroom trips a day, 3 cases of pouchitis, and two mild partial obstructions which passed without surgical intervention. I take no probiotics, and rarely use immodium. As of late, I have had some issues with a recurrent stricture, which I never had earlier on. But, I know when it is "tightening up" and go in and see the surgeon who then takes care of it. I eat what I want and I've learned how certain foods will affect me and decide if it's something I want to "deal with" at that time. If I had to do it over again? Yes!! In a heartbeat I would do it all over again. I wish that every person with a jpouch would have the same results I have enjoyed. Any questions, feel free to PM me.
Michele

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

I have thought about that as well but I figure 'normal' people can have incontinence issues later in life as well so I'll worry about it when I have to.

My J-pouch is almost 14 years old. I had UC for 9 years. I think I am doing pretty good. Adhesions are my main problem, recently. I can't eat any bulky food. I was able to eat more fiberous foods over the first 10 years. I have occasional pouchitis. Only take meds for blockages. (right now I am dealing with an ovarian cyst, take pain meds for that)

I have an 18 year old j-pouch. I've never had pouchitis and I eat whatever I want. I don't drink a lot of fluids and I chew my food exactly the same as I did before I had my surgeries.

Yep, we're all different. Just like the real world. Some people are prone to heart conditions or diabetes or any number of different things. Yet, for the most part, we don't dwell on those things. I'm not sure why we tend to dwell on things when we have a j-pouch. There's something for someone to study. Is it because we're the pioneers? (I don't think so.) Is it because it's with us every single day of our lives? (Maybe.) Is it because it's a 'bowel thing' which is virtually unmentionable in 'polite society?' (Perhaps.) But it does seem a lot of j-pouchers are a bit more focused on their pouches - frequency, hydration, types of food, chewing, bumps in the road, and on and on. Someone go study this....

kathy

A few more medical journal articles related to long-term pouch function:

This 2005 review on the long-term outcome of ileoanal pouches is comprehensive and
informative, provided you can get the full text from your library:
http://www.ncbi.nlm.nih.gov/pubmed/16328131?ordinalpos=...anel.Pubmed_RVDocSum

It concludes that cancers are rare, and points out that in the general
population, sphincter function worsens with age, beginning after 45-50 (gulp).
There are a few studies showing continence got worse over 12 years in
up to one third of j-pouch patients followed. The trick is to be among the other two thirds.

This 2007 study conducted direct measurements of patient's pouch function
(created 1982-present) for up to 16 years, in addition to surveys:
http://www.medscape.com/medline/abstract/17225209

They conclude that pouch function gets worse after 16 years, but not after the
first 10 years. Although patents reported more leakage, they didn't use more pads or
alter their diets. Pouch volume (when pumped to a given pressure) tended to go
down, so the pouch does not stretch out over time. The authors attribute
these changes to the normal aging process.

Finally, here are two 2007 articles on monitoring IBD patients (including those
with j-pouches) for signs of cancer (dysplasia). You can see the full text of
the second one from that link:
http://springerlink.com/content/dx1641l702ll8478/
http://www.dkmic.de/literatur/andere_gebiete/ulcerative...0proctocolectomy.pdf

For j-pouch patients, there is a correlation between having had dysplasia
in your colon at the time it was removed, and detecting dysplasia in
the pouch later (although, again, this is rarely seen). They conclude
that there is little evidence to support performing routine pouch biopsies
for at least the first 10 years (unless you have chronic pouchitis), and
after 10 years, only patients at high risk need annual biopsies. They
note that only 17 j-pouch patients have EVER been reported to have cancer
in the pouch or in the anal canal.

This message has been edited. Last edited by: bobolink713,

I gotta say, you people are making me feel pretty optimistic about my future. I realize everybody is different, but hopefully I'll have as good of results as some of you have.

I like hearing about these teenage and young adult pouches I hope they all become senior citizen pouches. Hugs to all!

This 2008 article indicates no increased risk of chronic pouchitis
for those with sclerosing cholangitis:

http://www.ncbi.nlm.nih.gov/pubmed/18266037?ordinalpos=...anel.Pubmed_RVDocSum

However, such patients should have frequent monitoring for dysplasia
in the pouch, as they are in a higher risk group.

I don't have a J-pouch, but instead have an S-pouch that was done in the early 80's(82 or 83 so long ago that I don't really remember the exact year any more). I was in my ealy 20's though.

I just turned 50 last month and have never had pouchitis, strictures, blockages. I have never even had my pouch scoped ever. I eat pretty much what I want, mainly because I know what foods trigger my needing to run to the bathroom quick, and when I really want it I eat it.

I don't take any meds for it. I actually have seen improvement after taking antibiotics for other issues. And currently I am have another issue that the dr put me on an antispasmodic which has slowed things down even more.

for me going to the bathrrom ranges between 4 and 8 depending on what I eat. currently it is between 2 and 5. And I have slept though the night most nights for years now.

just my 2 cents,

Beth

my comment is--any day with a pouch is better than a day with UC (my reason for pouch)

A note to bobolink713:

Good God, man! What don't you know?