Let me hear from those members who have had some really good outcomes with their j-pouch. Sound off!
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Mine has lasted 30 years. Do I love it? Hmmm - not so much- liked the functioning colon better. But, life throws what it throws at cha and I've made the best of it. I think young people now are getting much better pouches and better results than us old timers! Good luck to all!
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 regret mine, but this isn't the place to find jpouch success stories.
16 months since takedown & I love it, it's so much better than changing bags & base plates, carrying supplies, wearing xxl pants & always wondering if it's leaking, on the other hand it's a tough ride but patience is key.
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?
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.
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.
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.
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.
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!!
sorry - some grammar errors above - I type too fast. sorry grammar police
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.
LOVE mine. Wouldn't trade it for anything. Well, for a healthy colon I would but that wasn't in the cards for me.
I'm very happy with my pouch, in spite of needing antibiotics every day to keep it working well. Since my surgery I've taken up scuba diving, Japanese Ju-Jitsu (I teach it now), and regular exercise. These were all impossible for me for years while I was sick with IBD.
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,
I feel very blessed to have a 20 year old pouch. The pouch has been fantastic. It's the other issues like 2 hip replacements (steroids) , a abdominal abscess requiring major surgery to resolve, a fistula and a Crohn's diagnosis 3 years ago. BUT, my pouch has given me no real problems and allowed to be "bag free" for this many years. I truly hope that it lasts another 20 years.
I love my J Pouch. I'd rather not have FAP and a fully functioning colon without thousands of polyps, but, just not in the cards for me. I have zero issues with mine and wouldn't change a thing. 10 years and counting with mine!
I couldn't be more pleased! My pouch is working great!! Only going once or twice a day, very little butt burn, and no urgency. No leakages and I if I do have to go I can hold it for extended periods of time!!
Nora, how long have you had your J pouch?
so rustedfox from what I can discern you are seeking encouragement to move forward with a jpouch? i am glad to see the many positive affirmations as candidly often the internet can be a place to uncover problems as opposed to success stories. and i would also say that while my life is far from perfect, regardless i would elect to have the same surgery again as its alternative, living and fighting a diseased colon was not a pleasant game. i think at the end of the day as long as you are cognizant that generally surgery doesn't return you to mother nature's original state, it can dramatically improve your quality of life. good luck in your journey.
Muddy girl: takedown was 11/24/15.
DEWEYJ: I guess the idea behind the thread is to:
1.) Identify the positive aspects of going to a j-pouch as an "upgrade" from a disease state by hearing from those who have had positive outcomes, and
2.) Identify some of the more common complications, hindrances, and changes that one may run into with the j-pouch - perhaps because if I understand them better, I can prepare for them better.
I can say that I'm (perhaps) being extraordinarily pre-emptive in my search here; I still have my native colon, and I have had UC for 6 years now, but its been rather quiescent. I've sort of accepted the high likelihood that I'm going to need a total colectomy at some point in the future (maybe next year, maybe 10 years from now), and I'm trying to best "understand the process". You might say I'm being a bit paranoid, but I understand the risks and progression of UC very well (I'm a physician), and I'm trying to understand the process from the patient's perspective, rather than from the textbooks and research articles.
rustedfox wise you are. ask away you have a veritable world of experience at your fingertips due to the magic of the interwebs. hopefully you never have to cross that bridge but well prepare you will be.
To Rusted Fox - do all you can to hang on to your colon - but, if you must surrender it - and you will know when - you can have a great life with a j pouch. The pouches now are so much better, the surgery is easier (no cakewalk, but easier) and results better for so many younger j pouchers. If it gives you your life back, it's worth it. My comments should not deter you - my pouch was done in 1987..did well with it for many, many years. It is not really awful now, but it's more that I'm sort of tired of it. But, as people age, they get tired of all kinds of things and have health issues. I don't want you to be afraid if you have to do it. We'd all prefer the healthy colon - but this is a great alternative is the healthy colon wasn't the hand you were dealt. Good luck - good for you to check out ideas about it - there was precious little info. back in the day
Love it. I have some issues, but nothing like UC. My pouch gave me my life back.
Good to hear most have had good Pouches.
I tried. But couldn't get it to work or it wouldn't work properly. I was told that going into it but I had to try it.
I'm in a good place knowing I tried it I would have regretted not trying the pouch and going straight to an ileo.
Love my new pouch and life! At 50 and having colitis treated very successfully with meds for 30 years -- (pretty much forgot I had colitis!) -- it was a surprise that I had a big cancerous tumor. Five years of about six surgeries to correct "small leaks," in my first pouch, I'm five months out from my 2nd redo pouch with Dr. Remzi. And my goal is "no hospital, doctors or meds" for 2016! So far I'm doing very well. I am jogging every day and doing very well. While I "preempt" any emergencies by going to the bathroom before I go outside the house, I hardly ever think about it and have a normal life. Is it selfish of me to hope things continue going as they have?
Oh how I hope you are wrong about the "old tire" as my daughter had takedown 10 months ago at 17 years old. I'm on FB support group for parents and I've read of children (babies) as young as 18 months old having j-pouch surgery! This would not be good news for them!
My daughter is very health conscious and avoids sugar, processed food and most dairy. Luckily she is ok with raw veggies, fruit, nuts and seed which she lives on. She also takes several supplements including such things as turmeric for inflammation and probiotics. She's in college and going into the medical/GI field which I am thankful for. Also very interested in natural/integrative medicine.
I wonder if you take REALLY good care of yourself and are super health conscious if the pouch will last longer? Well that's what I'm hoping for my baby girl!
I do think that taking good care of yourself makes a difference and also - the pouches now are not the pouches we got 30 years ago - it's a whole new ballgame. I bet she will do great with it and I love that she is going into the GI field. I strongly believe in integrative medicine and that and learning other perspectives - Chinese/Indian, etc. - have all already helped so many people and will continue to do so. East meets West - lots of good things have come out of this in terms of medical care - we have a long way to go, but your daughter will be part of that process. Fantastic!
Im happy to have found this thread. My surgery for takedown is on January 25th and I am so excited to get rid of this bag.
Hell no, there's NOTHING I love about my j-pouch! (Which I got 20 years ago!) I mean, yes, it gave me my life back. Yes, I'm not going to get colon cancer. Sure, I'll grant you that I'm off of prednisone, which is an AMAZING anti-inflammatory that I call "depression in a pill," and that nearly ruined my marriage. And yes, I'm glad that I'm not taking immunosuppressants that mess with my liver and/or kidneys and threaten to make me more likely to get cancer. Sure, I'll grant you, that's good!
But I hate having to get up 2 or even rarely 3 times a night to go to the bathroom -- especially now that it's so cold! Yes, OF COURSE, that beats sitting on the can for hours, then finally giving up and being amazed at the insanely bloody mess in the toilet bowl.
I hate my scars! Yes, I'll admit that I love going to a restaurant and not having the first utterance coming out of my mouth be "Where are the bathrooms?" Yeah, that's good. But I still hate my scars!
Oh, yeah, and I DO from time to time get pouchitis. And that GENUINELY sucks. It's like ... well, it's like having ulcerative colitis again -- but with the difference that I take some antibiotics and I'm TOTALLY recovered. And I DON'T have ulcerative colitis -- 'cuz of the pouch! Which gave me my life back. So, I mean, maybe hate's too strong a word?
Maybe I mean to say, "Yeah, I wish I'd never had UC, which sucks and is cruel and unfair, and I wish I'd had just a super-healthy and normal colon." But, since I didn't, um, Thank God for my j-pouch! Might be what I meant to say.
Silo City - I got cha - totally. We wish we'd had a healthy colon - that was much better. We did not, so we are thankful for the pouch. We hope one day medicine will find a way to eliminate the j pouch as a need for anyone! I think for me it started getting to me around year 25 - but everyone's journey with the pouch is different - and I am now at year 30 and I'm feeling less bad about it again. I went through a period of just being so fed up with it. I guess we are human and just doing the best we can. Lots of good things in life for sure - and lots of not so good. My pouch was part of what cost me my first marriage - that and the infertility it caused - it was very hard on the marriage - we were also very young. 2nd marriage of 20 years has been great - he's a good guy and does not care about my scars or that I poop a zillion times a day or that I can't go out sometimes due to a back GI night - he just goes on about life and knows sometimes I have fatigue and need to stay home. He just loves me. Looking back, first husband was just sort of a jerk ...so it's better that marriage ended, but it was hellish at the time. Love is a good thing and it's so much better as a 52 year old person than it was in my youth. All older people know what I'm talking about. I think the younger folks getting the pouch are going to do a lot better with it than us old timers.
silo city. lol. yeah its not always a perfect replacement but its better than the alternative. and yes I agree, I have taken to saying its better than the alternative and I am glad that I made the decision to have surgery notwithstanding my amended crohns dx, strictures, etc, but I wish I had never had to have made the choice to begin with. and so we support the CCFA in its mission to find better treatment options and heck maybe even an actual cure someday.
Deweyj, Glad to hear you support CCFA, it's a great organization! I only heard about it a few months after my daughters surgery, I WISH her GI would have told us about it when she was diagnosed 2 years ago. He just said she had an incurable disease, gave us a script for meds and said she had to take it the rest of her life! It was shocking, I never even heard of UC before that so we felt really alone. I now volunteer doing graphics for the Michigan chapter and soon will be going around to area GI offices to ask them to give newly diagnosed patients an information packet from CCFA. Wonderful organization, we've met some really great people!!
Mary Beth, oh noes sorry your GI was unaware/unable to direct you to better resources. When I was diagnosed almost 40 years ago, I had to buy a book from the then National Foundation for Ileitis and Colitis (the forerunner to CCFA). Al Gore hadn't yet invented the internet. But that book was very instructive. I am glad to hear you're now so involved. A good friend of mine is on our local education committee doing the same volunteer work you are. here in the SF bay area docs and hospitals are well equipped but in the Central Valley of California much less so and I hear the GI's and their staff are very receptive. I do most of my volunteering via very heavy participation in the Team Challenge program and it is always inspiring to meet new patients and engage them as they progress in their journey.