Bruce - good for you! Great to hear a good story and you have a positive outlook. Fantastic.
I've had my j-pouch for 19 years now. Dr. Mickey Harris was my surgeon when he was at Mt. Sinai. He said he operated on someone who was in their 80s!!!
Husband had pouch done at 53, 5 years later and he is still a mess. The pouch has been a living hell fom the take down. He has tried diet, a slew of supplements, cycles antibiotics, immodium, nothing helps. Have acquaintances who had pouch done at ages 20 and 24, who are now in 50's and have little issues.
mjl
i went through similar problems and then some--blockages and the such--for 15 years (a slow learner, or at least actor.) last nov i finally got a k pouch and am doing very well. check out the k pouch korner for lots of excellent info on happy k pouchers. it's an option. jlh
There may also be a 2nd aspect...not just how old you are with your pouch but how old your pouch is...mine is 37...
Sharon
skn69 posted:There may also be a 2nd aspect...not just how old you are with your pouch but how old your pouch is...mine is 37...
Sharon
My pouch is 35
Haven"t been on in a couple of years and just happen to check in tonight and when I did I found this topic. I am the Gloria Suebear was speaking of. I had my jpouch in Jan 2000 at 69 and am now 86 and pouch is doing just fine in fact I forget I have one. I still have my tap dancing group and am just perfect in health, nothing has changed for me.
I'm 66 and love it
You are fantastic Gloria...you are such a force of nature...we miss you on the site but I understand that you are way too busy living life (thank goodness) and I am thrilled!
Just please, pop in from time to time to remind us how wonderful life can be.
Sharon
Great to hear from those doing so well with their pouch - yes -pop in and say "it's great" - we need to hear it!
I know so many people do great with theirs as I did for so long - and I forget when I struggle - that there have been so many more good years with it. Thanks Gloria and all who posted.
Thanks Sharon and Angie for your replys. I promise to check in more often from here on out instead of spending so much time on Facebook and keeping busy with husband. Not sure if you are on facebook. Gloria Cowles, Arroyo Grande, Ca.
I'm 57 and I've had my pouch for 20 years. Had a few problems with pouchitis the first couple of years but overall things ran smoothly. About three years ago I started having more frequent bowel movements, urgency, mouth sores like the UC was back. I asked my doctors if it could be Crohns but they insisted "no". I finally had to go on hydration IV therapy twice a week to keep out of the hospital for dehydration and low potassium. I went to the Mayo clinic where I was diagnosed with Crohns. Thankfully the Remicade treatment is calming my Crohns.
Unfortunately over last year I developed a new problem. My small intestines are not absorbing nutrients as they should. Vitamins, electrolytes, minerals you name it pass through unabsorbed. Currently I have to be on TPN, IV nutrition, 12-20 hours a day. Doctors can't explain why. Even went back to the Mayo clinic, no answers.
Even with my current problems I have no regrets in getting my pouch.
skn69 posted:There may also be a 2nd aspect...not just how old you are with your pouch but how old your pouch is...mine is 37...
Sharon
My pouch is 21 years old. My brother's pouch is 51 years old (he'll be 60 years old this fall).
Wow! I didn't know that they made pouches in the 1960's! I thought they started human trials in the 1970's...that has got to be the oldest one that I have ever heard of!!! Fantastic! Kind of gives us all hope for a long and prosperous pouch future!
Sharon
skn69 posted:Wow! I didn't know that they made pouches in the 1960's! I thought they started human trials in the 1970's...that has got to be the oldest one that I have ever heard of!!! Fantastic! Kind of gives us all hope for a long and prosperous pouch future!
Sharon
I don't know if it's a J pouch or something else. It was done in only one surgery and he had complications for the first year. Since then, he has had no significant G/I issues.
My parents were told he was one of the first for the surgery. My mother doesn't know if that was a regional "first" (performed in Cincinnati, Ohio) or a literal "first".
From time to time, he is asked to be examined for research purposes.
It is very possible...next time that he has his exams/tests done have him ask/confirm that it is a j pouch...that would be such wonderful news...really.
No matter what it is, it is fantastic that it has worked so well this long.
Sharon
It really wouldn't be a J pouch from that era. They hadn't been invented. My guess would be a direct ileoanal or ileorectal anastamosis.
Hi Everyone.
I have had my J pouch since 1986. Before that I had an ileostomy for 2 years caused by Toxic Megacolon.
The Pouch was done by Prof. Hawley and Prof. Nichols at St. Marks Hospital in East London.
I only have about 60% capacity in the pouch so I go to the toilet around 20 times a day, but I manage fine.
Before/with every meal I drink about 3-4 gulps of Efensol/Colestiramina Resin mixed with water. It is really intended for lower cholesterol levels, but as a secondary-effect it really slows down the digestive processes, and thickens up the pouch output. Although one must be careful not to overdo it as you risk a blockage!
I would say it works better than Loperamide, which I only take once at night before going to bed.
I usually eat a good breakfast and lunch, but at night try to eat light meals or just a yoghurt, so that I sleep without waking up at night or maybe just once a night.
I find that food needs 3-4 hours to clear out of my digestive system.
I agree that one of the secrets to a sucessful pouch, is to watch what you eat, drink plenty of water, take regular exercise (I ballroom dance and walk a lot), and of course sleep well.
I do suffer occasional bouts of pouchitis, and inflammation, usually triggered either becoming run down, or by things I eat such as some spicy foods (curry and so on).
Even certain brands of my favourite red wines trigger it. Every time it happens I take 4->6 x 500Mg Metronidazole anti-biotic on a daily basis and rest up. It usually clears up within 1-2 weeks.
If the inflammation is bad and there´s some blood then I also use Mesalazine suppositories for a few days, that always does the trick.
Now lots of joint problems with arthritis but that´s to be expected with ulcerative colitus/chrons etc.
I have had 7 abdominal operations over the years for hernias and scar tissue removal which have caused bowel blockages and strangulations.
I am currently wait-listed for another 4-5 hours of scar tissue removal. I live in Spain, where the Health Service is a disaster with long waiting lists.
Regards.
Paul.
Hi, my pouch was constructed by Sir Alan Parks, and the J pouch is in fact a Parks Pouch. Surgery was performed in 1981 at St. Marks Hospital in London and take-down was early the following year. Sir Alan died later that same year leaving me in the capable hands of Prof. Nicholls who has since retired and I now consult Mr. Paris Tekkis when I visit the UK.
I'm 54 today. I was 18 when the pouch was made at St. Marks hospital in London. 36 year old pouch.
My pouch function deteriorated during the hormonal fluctuations of my late 40's and early 50's leaving me with a Bartolin's abscess which became a fistula. However, I've been lucky and now that menopause is over, the fistula has disappeared! (I was assured it wouldn't and was cajoled to take a biological medicine like Humira or Remicade but refused). I take 500 mg. Ciproflaxin every other day or every day depending on the state of my pouch.
I can't complain, or won't complain. I eat vegan and firmly believe dairy detrimental to my health and meat not helpful. since becoming vegan all my blood work has improved immensely and I need no supplements. Even my B12 normalized after a few months! My hubby is an Md. and he has been amazed by this transformation.
I live as stress free a life as I can and practice yoga daily. I go to the bathroom when I need to. I sleep at night with a pad which sometimes needs to be changed and sometimes not. Depending on what and when I've eaten. I irrigate my pouch with water at least once a day which helps me empty out better.
This forum is a comfort zone for me.
Have had mine since 1987 I was 21. Just turned 50 a couple of days ago,
. 29 years going strong!! 3/6 bowel movements a day
I'm 56 with a new year-old pouch redo. It's been very good!
My dad had his 3-step surgery in 1985, when the procedure was still largely experimental in North America. In fact his was one of the first reversals done in Western Canada. He was about 38 when he started having surgeries -- about the same age I was when I was diagnosed -- though he'd had UC for many years before that and finally had the surgery because he was told he was at a high risk of developing colon cancer if he didn't have it out. Back then the surgery was a series of 3 conventional surgeries, so his belly is pretty much a mess of scars, and he has an incisional hernia that isn't really operable but doesn't give him much grief either. His bowels work pretty well, and he's had no significant issues over the past 30 years. He's 68 now and still pretty healthy.
I've had my pouch for almost 3 years and I have bouts of weirdness off and on, nothing that's developed into full-blown pouchitis, but periods discomfort and increased bowel activity that usually leads to some level of dehydration. I'm gradually learning the signs and how to deal with it, but my pouch has given me a quality of life I feared I'd never have again after 5+ years of acute chronic illness.
Incidentally, there's an ostomy clinic here that I used for a while, and they have a little mini-museum of historic ostomy devices. We are lucky to live in the modern age! I believe this is a miracle surgery.
Great to hear from you Karen! So glad to hear about your Dad - my surgery was done in USA in 1987. Yep - stomach a map of scars - and have had to have some other surgeries - but I am 53 now and have done quite well with the surgery considering how "new" it was at the time. I wish you all the best - you can live a full, excellent life with this surgery - you just have to be realistic that at times - it's a challenge - and looking back -I pushed myself too hard at various points when I should have given myself more time to heal. this was my "can do" attitude - youth! - and had I slowed down a bit - I think I would have had fewer set backs. Just some thoughts - you don't have to be superwoman all the time So glad you and your Dad benefitted from the pouch. Keep up your great attitude. Proud of you!
I'm 66. Had my pouch about 14 years, never pouchitis or anything else.
I am 62 and I am going on 9 years
and thank God.....all is well
My age is 83. Had pouch 15 years. One instance of pouchitis which was induced by heavy use of NSAID's. Work was done at Cleveland
dgloria5 posted:Haven"t been on in a couple of years and just happen to check in tonight and when I did I found this topic. I am the Gloria Suebear was speaking of. I had my jpouch in Jan 2000 at 69 and am now 86 and pouch is doing just fine in fact I forget I have one. I still have my tap dancing group and am just perfect in health, nothing has changed for me.
Hi Gloria so glad to see that you have been doing well. What is your regimen do you have a special diet? Did you ever have night time leakage with diarrhea? This seems to be my issue since Oct 2014 when my ileostomy was reversed. Daytime I seem fine then at nighttime when I am lying down the seepage starts. I have to change diapers 4-8 times per night. Do not get a good nights sleep. Very frustrating. I've been taking lomotill and does not help at all. Take Metamucil and starts kicking in by daytime maybe I should take it earlier! Anyways just curious to know if you take probiotics or vitamins that help with the jpouch. Appreciate your reply! Enjoy your tap dancing! So happy for you that it is going well .. Lol want to know your secret. Wish you a great Sunday!
I'm 47 soon to be 48. I know of a few people with pouches well into their 70's.
I am 58 and had my J pouch surgery because of UC in 1997. I started having problems about 4 years ago with chronic dehydration and my diarrhea was worse. It took a while but I was finally diagnosed with Crohns 2 years ago.
It has been a while since I have been on this site. I had my J-pouch surgery because of UC in 1993 when I was 23 I am now 46. The first year was a little ruff. But other than a couple of blockages over the years. I have not had any real issues in 23 years. Sometimes I forget I have one.
63 years old j pouch now for me is 5 years old.Had first major obstruction in 5 years this past spring. I had forgotten that feeling. I Thank forums for all the info which I have read over the years.
Cassie
I'm 62 and my j-pouch is a little over 3 mos. Hoping to get several years out of it!
I have had mine since 1985 so I am just over 30 years. I just turned 50 a few months back and have had a great run so far with very few issues. A recent issue with pouchitis has my attention but am hopeful I can move past this as well and look forward to another 30.
My age is 83 years. Pouch age is 16 years. No pouch problems other than one occurrence of pouchitis which, I believe, was induced by heavy use of NSAIDs at one time. I do not observe any diet restrictions -- other than a perceived healthy dictate.
I'm 61 and had my j-pouch for 5 years before having it removed around a year ago. I now have a permanent ileostomy. It is good to hear of the long term successes. I wonder if your surgeries were hand sewn vs the double stapled surgeries. Most surgeries performed in recent years and 6 years ago on me are double stapled ones. The little bit of rectum, requlired for the double stapled surgery, is what caused my j-pouch problems.
I will be 53 this year and have had my pouch since 1998. It's a W pouch which is larger than the J pouch. It is large and floppy and collapses on itself making it difficult to empty.
It is painful every single day as soon as it has anything in it. Emptying the pouch is so difficult for me
I find myself staying home to be near the toilet. It changed my life and not in a good way.
Hi my name is Debbie
I am 62 and have had my pouch for 9 year .
i pretty much eat what ever, not always a good out come(peanuts) but can't complain.
not infections since surgery , a few bowel obstructions, but all is well.
Question for after Take down. Getting treatment or checked for Pohchitis, or Pouch Exams, is that done by the Surgeon or back to the GI doctor for that?
GI but in the beginning my surgeon wanted to check it out.