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10 weeks out from my reversal and I love love love my jpouch ! There were some adjustments during recovery (butt burn, cramping etc) but those settled within the first month and I'm now into a pattern of between 4-6 BMs a day and my variety in diet is steadily expanding as the weeks go by . Most importantly , I have no urgency ...a healthy colon would have been my first wish but that just wasn't in the cards for me. there really is no comparison when I think  about the hell my UC put me through ..this was the first Christmas season in five years where I was able to leave the house and do my shopping for six hours without even thinking about a bathroom once! I credit the skill of my surgeon for the outcome , and his conservative healing time spans (3 step process that was spread over 16 months total) It was a long haul but it gave me so much time to heal and get stronger in between operations 

I'm approaching 8 years since takedown, and I love my pouch. It's important to understand that you have to know, going into this, that no outcome is going to be perfect. I've had bumps along the way, and I have accepted that there will likely be more to come at some point, but most days I don't give my pouch a second thought.  I feel like the pouch gave me my life back. I am a very active person - this year I completed two 5K races, my first with the pouch. I'm also an avid horseback rider and I take 3 power yoga classes a week.  I almost died as a result of UC. I have absolutely no regrets.

What I'm wondering when I look at this thread is why do people with the newer pouches seem to be more satisfied with their pouches than us people with the older pouches?  Have they made any changes in the way they perform the surgery versus 20 or 30 years ago?  I also wonder if there's any surgical enhancements that can be made now to improve a older pouch?

Good Dawg,

I wonder if the answer to your question is that people who are getting J Pouches now are by and large healthier when they get their pouches than those who were getting them 25 years ago, and also have better medical guidance as to whether they are appropriate J Pouch candidates in the first place.

I consider my J Pouch a success in comparison to what came before it.  I had 20 years of UC and now 23 years with the J Pouch, of which 20 of those years have been spent battling chronic pouchitis- mostly successfully.  If I compare it to what came before my J Pouch, I would say success.  However if I compare my outcome to others who have had J Pouches without continual struggles with pouchitis, maybe not a success.  However my quality of life is good, I have worked 23 years full time as an attorney without never missing work to these issues, so I lean towards saying it's imperfect, but a success.

Last edited by CTBarrister

Dawg, you ask a complex question and the answer is complex. For one, of course there have been advances and improvements in technique over the past 30 years. Also, the longer you've had your pouch, the more likely you are to develop pouchitis, chronic or otherwise. People are going to vary on what they find as acceptable. Some demand perfection and are unhappy unless they have function similar to a healthy colon. Others can be fine with chronic pouchitis, as long as it responds to treatment.

Most people fall somewhere in the middle. Consider me in the latter category. Since I *had* to have a colectomy or suffer dire consequences, I am fine with pouch, even though it causes problems for me. But if it caused me enough grief, I'd be OK with an ileostomy.

Also, pretty tough to establish a concensus on so few responses.

Jan

I do love my pouch. Have had it for 23 yrs. It has functioned well and I'm so much healthier than I was having UC. There's no more urgency. Have been able to work full time in a very demanding profession. Am so very grateful to thedoctors and surgeons who made my surgery possible. Last summer when picking a peach from our tree, I actually thought of the doctors who made it possible for me to enjoy eating fresh fruit. Such a simple thing, but I take nothing for granted since my surgery.         

Rose

loving my J pouch.

Opting for J pouch surgery was one of the hardest decision I've ever had to make.

I had Stoma for years and as my physicians put it " I adapted well."

Always been able to eat what I like, which since takedown has remained the same.

My BMs are on an average of 4 to 5 per day, sometimes 6, last time I took the trouble to count, it a was 3 to 4 BMs per day but it varies so much, it's difficult to be specific.

I can go for 2 to 3, maybe 4 hours between BMs, sometimes 6, there's never any urgency, can always wait till I'm ready, although I do endure the odd accident and heavy leakage on occasions.

I can sleep for 8-10 hours without night time toilet visits.

Currently, life with the J pouch is good, especially in regard to my body image but after reading some of the post on this forum, I fear that any time soon, some kind of complication will occur.

Last edited by Former Member

Hey Strange -

Don't worry about having problems with it just because I had some.  Mine worked great for a very long time...and  there were other factors which contributed to my pouch bothering me.  Also, my sister has had her for 30 years - and she's had probably 28 good ones - the point is we are alive, I guess  My Dad has had a pouch for 32 years and he's done great with it.  He is almost 80.  Really, my attitude and some depression over other health issues contribute to this for me...so this may never even be an issue for you.  And, I still clearly am managing as I have not asked to go back to an ileostomy.  I just liked it better when I was younger and more fit - but that's just living.  I feel bad that I said anything negative - I don't want to discourage people.  None of us has guarantees about anything really in terms of our health - we do the best we can and try to make healthy choices - the rest -all the worry - for what?  Doesn't fix a thing.  For me, I eventually went on some anxiety meds as I was diagnosed with major depression and PTSD.  I had no idea I was even that bad off - I thought it was just "normal depression."  The reasons for this were not just the j pouch.  Anyway, the anxiety meds (very low dose) are great to take the edge off of worry - but they also make you a bit apathetic (at least they do me).  But, I'd choose that over the panic attacks, etc. I used to have.  Again, this was a botched surgery (hysterectomy/oopherectomy) that caused a perforated small intestine and sepsis and then another surgery and that's a long story -the point it - it was not just the pouch.  It sounds to me like yours is running great!! And I am truly happy for you - mine ran well (not quite as well as yours) but relatively well for 23 years. You may find you do great with your pouch and never have much of a problem with it and I hope that is the case!! 

My GI says the longer a pouch exists, the more issues he sees. So it may be that newer pouches just haven't had time to ripen into their new issues. I had zero, and I mean zero issues for 20 years post takedown. Yeah, I had the normal tapering of BMs right after it, and had to use some ointment early on, but I fell into a predictable pattern and ate whatever I wanted. It was only at about 21-22 years some stuff got wonky. He said older "pouches" are coming to him with new issues, for sure. Give them time, I suppose, to see if anything changes I guess.

Although I don't believe my jpouch ever operated "as advertised" by my surgeon and docs, I have had good days, where I didn't think about the pouch - those were the days I loved it. 

But as some above have observed, the older it gets, the more problems I've been having.  Going on 24 years, and all kinds of issues developing.   Could be the autoimmune issues not wanting to let go of it, or kicking back in, could be that I pretty much eat/drink what I want (which isn't much, really), and I sometimes wonder - tongue in cheek - if there just hasn't been too much usage over the years - too many BMs/gas wearing it down, like an old tire, ha.

N/A, the old tire analogy is interesting to me.  As my pouch approaches 24 years in age I have had a combination of the same thoughts - not eating well over the years, chronic pouchitis, not being able to keep the bacterial levels appropriate due to consumption of antibiotics, bacterial overgrowth due to the lack of a backsplash valve- all of these factors conspiring together to wear the pouch down.  Most tires are good for at least 50,000 miles, and then you buy new ones. The problem is that all of us with 20 plus year old J Pouches already have 50,000 miles on it, and we can't buy new ones.  We are all destined to drive our J Pouches into the ground, for better or worse.

Last edited by CTBarrister

I really do love mine.  She's 30 yrs old and I eat whatever I want, whenever I want.  I am more spry than most 50 yr olds I know. I also have never experienced the horrors of pouchitis, knock on wood.  May be an "old tire" but she runs like a top.  My heart goes out to all who are having problems with theirs, however, just wanted to sound off about my personal, very positive experience with mine

I cannot express in words how much I love my j-pouch.  It is two years old and functions beautifully.  I can eat almost anything I want (have to watch citrus and blueberries...butt burn) and do any kind of activity I can think up.  I work full-time as an ER nurse and can quite honestly say I don't give my pouch a second thought.  I will be forever indebted to my surgeon.  He gave me my life back by removing a colon that had ceased working and was ready to rupture.  I had no idea I could feel this good.  My fervent wish is for all others with bowel issues to feel as good.

Happy New Year,

Michelle

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