My 15 yr old son is having step one today. Just wondering what the oldest jpouch is since my son has many years ahead of him.
Replies sorted oldest to newest
Some of the original pouches are still going strong about 30 years later. They don't seem to fail from old age, though (like every other body part) the longer they are around the more time they spend as a target for bad luck. You can beat up a pouch by straining to poop, so some basic TLC is required.
Sorry about your son. I got my pouch in '86 when I was 23 and it has been great. A few bumps in the road, but versus my old UC life, there is no comparison whatsoever.
Noticed that you are in Jersey -- so am I. Don't hesitate to reach out to me.
Michael
I would recommend yearly scopes with a GI doctor to monitor the Pouch. Good luck with everything.
Scott F posted:You can beat up a pouch by straining to poop, so some basic TLC is required.
Yikes. How do you not strain?! I can't empty unless I do. It just won't come out otherwise. (Ahhhh, the crazy things we disclose here...)
I'm in year 12 of my pouch. A relief to me to hear of 30 year pouches.
My surgeon told me my j pouch will last as long as I do. My sister has a j pouch as well and hers is 24 yrs old and still going strong.
I'm in NJ as well. Where is your son having his surgery? Mine was done at Jefferson university hospital in philly. Don't hesitate to reach out....I have a 15 yr old son as well. I can't imagine how tough this must be.
Not straining may require a multi-method approach. If the stool is too firm, make it softer. If your feet are too low, place them on something (e.g. a Squatty Potty). If your pelvic floor muscles need tuning up, find a physical therapist that does pelvic floor therapy. There are probably a few more things to add to this list.
A bit of abdominal pressure is fine, since the pouch lacks the muscles to squeeze stuff out. Just find a way to go easy on yourself, if you can.
I've had mine since '86 as well, I was 21 yrs old. Back in the day I had the occasional scope, but don't feel the need for them as a general rule. Mine is still going strong. And yes, I strain, not every time, but yes there is straining, have never given it a second thought
I still don't get this whole "pouch life expectancy" thing. I was never told my pouch had a expiry date. While it is true that the longer you have your pouch, the more potential there is for developing problems, you could say that this statement is generally true for any organ in the human body - i.e. the older your heart is, the more that can go wrong with it, etc.
If successful, a pouch can greatly improve quality of life for those suffering with UC. And most studies peg the satisfaction rate around 85% compared to life with UC. Best of luck to you and your son!
Surgery went well. Surgeon said his colon was a mess and that we made the right choice. He doubts any other meds would have helped. My son feels so much better already than with the colon.
We are at Mt Sinai hospital NYC. My husband had this same surgey 10 yrs ago. My husband doesn't have to strain at all.
As others have said, I've never heard that there is a life expectancy with the pouch, though for some, chronic pouchitis and other things can be a problem. My dad had the first "non-experimental" pouch reversal done in western Canada, in 1985, and to my knowledge he hasn't had any problems with the pouch. Knock on wood, I've had some discomfort (as I'm experiencing right now) but no infections requiring antibiotics so far. Good luck to you. It sounds like your family, like mine, is affected by this disease. And btw, the doctor said the EXACT same thing about my colon after he took it out! Glad I got that poisonous thing out of my body.
Glad to hear it went well. He's in good hands there. I met with Dr. Bauer over at Mt Sinai but then ended up in Philly for my procedure. Hope he has a smooth recovery.
Dr. Bauer and Dr. Gorfine are great. Dr. Harris, who used to be in that same office, did my husband's surgery. We went with Dr. Khaitov who trained under Dr. Harris.
class of 86 too! Michael i was 23 as well. are we jpouch twins? ha.
momma, i have a friend who had her one step done by Harris, in NJ right? i hear he only does one steps, unless there are complications during surgery that preclude it. mt Sinai is a fine hospital. with his dad as an experienced jpoucher, with the caveat that we can travel different paths, he should be fine. i did see your recent post about mucosal discharge.
i agree with Spooky, i think every organ in our body will be less optimal with age, but does that mean the jpouch has a limited lifespan, i guess we will find out as the oldest jpouchers (who are about 5 - 10 years older than mine) age?