How long have you had your pouch?

I have had my J pouch since June 1984 after 10 years with UC and being told I could be at risk for colon cancer.   I was the 13th in Scottsdale, AZ to have the experimental surgery done by Dr. Leff.  The first year was very difficult, learning my "new life".  I was told that I would develop arthritis as i got older. Along with a family history of arthritis, at 7 I do have a lot of arthritis pain.

I have a fair amount of leakage, and sometimes I do  not realize I have leaked. After my J pouch surgery, my surgeon told me to take Metamucil twice a day with Gatorade. I also add Vitamin C crystals (as recommended by Dr. Jonathan Wright years ago). Drs. and people have recommended that I use products similar to Metamucil but I have learned that Metamucil serves me fine, so I just stay with that and refuse to try people's recommendations.  I know my own body. Of course there are restrictions but after all this time I have learned how to handle my J pouch.

Once I settled down with the J pouch, I did fine until about 1994. From 1994 I had 5 years of problems and no doctor could find out what was wrong with me. As an example,  I would go into a restaurant feeling so hungry but the menu was put in front of me, and I could not face food. I had so many problems but no one could help me. The doctors sent m e for all kinds of tests, other doctors, etc. I felt I was getting extremely toxic and was sure I would die  Finally my colon surgeon, Dr. Lee, in Portland, OR. said there was just one more test they could do.  I said "Do it".  They put barium in my bladder and in my butt, then filmed me as I eliminated.  They found out that some of my staples had come loose and I eliminating from two places and was very toxic.  Dr. Lee immediately redid my J pouch and I did fairly well after that.  Last February I had a lot of  medical problems and my gastro dr. did a flex sig but said my J pouch was fine. I am in Stage 3+ kidney disease.  Have post polio. Early last year I started to get very weak.  My kidney specialist found an irregular heartbeat and I had lots of tests. Found I had para something atrial fib. I was put on Coumadin as my GP was scared I would have a stroke. I would wake up between 4:00A.M. and 6:00A.M. each morning with my heart racing.

Referred to regular cardiologist and she put me on beta blockers.  I passed out in grocery store, ended up in ER, and they found suspicious cancerous lesion on 12th rib. Visited oncologist, then bone scan, all OK.. Cardiologist asked me about my sleep apnea and if I was using my CPAP. My husband had been very sick around 2012 and died in March of 2013. At that time the humidifier of my CPAP machine was not working but I could not take the time away from my husband to get it fixed.

So I was not using my CPAP machine.  Cardiologist immediately sent me to Sleep Apea doctor who ordered a brand new Dream CPAP machine.  Since using that new CPAP machine, I do not have the heart racing each morning.  GP also wanted me to see electrical cardiologist ,who scheduled a heart study and possible ablation for Jan 6, 2016. With the heart study  they went up through my groin areas into the heart.  Electrical cardiologist said he did not think ablation was necessary.

Since then (Jan 6) I have had aching and pain in my buttocks (feel like need butt held up!)  and in my abdomen. I am not  sure what to take for the pain. Will discuss it with GP next week.  

I am very happy that I have my J pouch and hope it will continue to work for a long time to come. One thing that I do ,  is I bounce very gently on a mini trampoline 5 minutes at a time.  It is called Rebounding. I usually need to have a BM after I have exercised.

I wish you all good luck with your J pouch.

See forgot to put the 6 in my age - I am 76.

an oldie but interesting post. I'll tack on my cliff notes on my experience. few months shy of 30 years with my jpouch. first 19 years had periodic pouchitis about every 18 months and learned how to cope with it fairly well by early recognition of onset, but then about 10 years ago the frequency of pouchitis increased dramatically, so with a coastal relocation, my new doc dx'ed me with crohn's. I punted starting the biologic Remicade that she recommended as it was relatively new med back then. regrettably in hindsight as that one year delay allowed crohns to wreak havoc in my pouch and I now have a mid pouch stricture which has the effect of reducing capacity so I arguably go 2x as often as I might otherwise. I candidly don't recall but I had largely gotten used to my new normal pre crohns dx, pre stricture. now I battle more or less daily, nightly but even so I would redo the exercise. I will read that reconstruction article posted but I do wonder if anyone has any further detailed study information.

I've had my k pouch since 1979...that makes it nearly 37 years old!

It is in its 5th or 6th reincarnation...(I am hoping that it is not a cat and only has 7 lives)

Sharon

I've had mine for 10 years, coming up on 11.............very happy with it, no issues whatsoever!

13 years and counting!

After reading all the replies. I think it's time the medical field would have a jpouch guide.  Based on all the responses  , surgery, problems, and successes jpouch recipients have had , what do you guys think?

I have had my pouch since 2008. It has been hell. Fighting yet another bout of pouchitis. Have an appointment with original doctor who did surgery. Gastroenterologist is throwing hands in the air. I have thought all along that my life time of colitis is now crohns, but no one wants to here that. Maybe some answers soon. Mid Feb. I wonder all the time if this was the right choice.

sorry to hear that Burning Brian, my dx has morphed to Crohn's. I spent about a year in denial, believing my doc had to be wrong. But once I accepted her dx, and I started the biologic Remicade vs the rotating antibiotics my QOL improved, is it perfect? far from it, but its livable. how much experience does your doc have with jpouchers? I wonder if another set of eyes might be of help?

You don't need a Crohn's diagnosis to be miserable. In my case, if I pretended that I just had "frequent" pouchitis, and stopped antibiotics over and over, then I'd frequently be quite ill. By accepting that I have antibiotic-dependent pouchitis, and treating it continuously, my life is comfortable and quite excellent (at least for now). Not everyone's circumstances are equally treatable, but I'd strongly recommend careful self-examination about giving treatments the maximum chance of working, and (if possible) accepting the diagnoses with equanimity. Some of us are, of course, suffering with stubborn conditions. Others of us, though, may be suffering with stubborn selves.

Yes - to whoever said there should be more guidance regarding the pouch....mine is 30 years old..I won't bore you with ups and downs.  Mine was done in 1987.  For me, it worked really well and then not as well at around 25 years -but I have said before I think that was not just the pouch - it was other surgeries for other problems and getting older, etc. - also was very stressed out at work. I just quit work one day and never went back full time - this was dumb looking back - I could have tried to let my employer know and work something out and have more money for retirement, etc. - I never did try for disability -I think I deserve it, but the thought of fighting for it is too awful (heard one story where a judge suggested the woman could work if she went back to an ileostomy - good grief!)  I am lucky that my husband supports me - but it has not been easy financially as I earned more than he does. I am just so thankful he puts up with all the ups and downs of my health.  I think they are doing a better job now with creating the pouch and the newer folks are going to do better for longer.  For most of us (if not all) - what was the alternative?  We'd all prefer to have a normal colon - not the hand we were dealt - so we cope as best we can.  Power to the pioneers of the pouch. 

We did the best we could (and still are) with the hand we were dealt.  It could have been better - and could have been a lot worse. I do think one of the most positive things that came out of it was in my work - I was a teacher - then a counselor - I could really understand and advocate for kids with different illnesses  - I was fierce about it - and I saw others who were in perfect or nearly perfect health wanting kids to "suck it up" a lot - and I really worked to advocate for those of us who may appear really healthy - but who have all kinds of health struggles.  Yes- you have to suck it up - and sometimes - you just can't.  (not saying I was a saint here - just saying that as with any suffering - hopefully it increases your compassion for others).  This site has been amazing for me.  Someone above mentioned people on the site post more "problems" - that may be true.  There are probably many, many people who have a pouch, do well, and never get one this forum.  I was not on it for 29 years....I find it comforting to know there is a place to go when things are rough.  I don't find it a "complaint" department - I find it a place to where people can say what they are going through and know others actually get it.  I am beyond thankful for the wonderful people who created and manage this site. THANK YOU!

10 years here and counting - interested to see how it ages though! Angie makes a good point though. So many people come to this amazing site because they have problems, and can get an answer here, but there must be many many more of us who have no problems and are very happy with their pouches.

Absolutely!  I don't want this to scare people from a pouch - it is not the end of the world to have a pouch.  I had years and years of good times with my pouch - ups and owns came later - and that does not mean they will come to everyone.  When you go to a j pouch - you probably have no alternative - except perhaps to buy yourself some time without it depending on your circumstances.  If you have to get it, you can have a wonderful, productive, fulfilling life.  Don't let older people like me ever discourage you if you are young - don't read all the complaining threads (some of which I am on!) - we just need to vent about current issues - but I have said this before - had pouch for 30 years come June of this year...if I am honest - many, many, many more good days that bad for me - probably 90 percent to 10....that's good in anyone's life.  Rock on, all who are getting the pouch - attitude is everything.  And if you fall down, you get back up - it's just you get up a little more slowly at 53 than you did at 33 ...well, that's nothing new  Carry on, pouch people!

 I had my surgery in March and my take down in September 1988 so it's almost 28 years for me.  I went back to school a  year after my surgeries, finished grad school, then worked for 8 years but eventually stopped when we adopted our kids.  I also had a home baking business for a while but developed osteonecrosis  (from Prednisone)then neuropathy in my right foot.

Things have gotten harder over time and I did go on disability.  I still work part time and try to keep myself in shape.  I don't like to travel any more.  It's too hard to deal with all the bathroom stuff, but  I'm lucky I've been able to travel all over the world before and shortly after I got my pouch.   I  went to Australia three years after my surgeries.  

I think that when I was in my twenties I had the expectation that soon things would be normal and I put up with a lot including butt burn, frequent bms, even pooping in the woods when I had to.  

I just turned 56 this weekend so I've had about half my life without a pouch and half with a pouch.  This week is my 28th anniversary of when I was admitted to the hospital.  I just realized that.  I feel a whole lot better today then I did on February 15 1988.  

Theresa

Theresa - I hear ya and congratulations of 28 years - it really is an accomplishment!  I agree about the travel - I never say never - but I am so glad I did a lot of that when I was younger.  Everyone is different.  I am sorry for your other health issues - they always said getting older was not for sissies - they were right!  I will be a 30 year poucher in June.  Many more good times than bad - so I am thankful.

Solomin posted:

Hi Everyone,

I had my takedown surgery in 1984 where a jpouch was created (supposedly).

How long have you had yours?

I would like to know if problems increase (or a greater incidence in issues) as time goes by.

I have not really encountered anyone on this site who has had one more that 25 years.

I would be interested in hearing your story as I have a pouch that is not good and I am currently on a waiting list for reconstruction surgery.

I do not know of any studies being done on anyone after this length of time (25 or so years). I would be especially curious if there was a greater number of individuals who required additional surgery after a specific period of time.

All this time has passed since my origonal surgery (I was one of the first to have jpouch surgery at the French Children's hospital in Montreal) and I find it extremely surprising that no one has ever followed up or done any study to see how quality of life is 25+ years later.

Thanks,

Solomin

I have had my jpouch for 32 years. Had pouchitis , fistula, adhesion take down and over 25 dilations. Now there is so much scar tissue I need to irrigate to go. Made my own two ounce tool from a syrange. I can't eat meat and lots of foods that I could before. The inside of my small intestine where they cut it and made the stoma is filling in with scar tissue. Adhesions are every where. I can feel staples push through sometimes also. I coach and teach PE. On my 79 th baseball team. I pitch and hit and rip tissues inside so they repair themselves. I don't have a day without pain. But I stay in motion and will keep doing things until I can't!!  Not a couch potato !!even with a jpouch!

Tanner - 30 year poucher here - good for you.  Playing with pain is a great attitude to have with an old pouch.  Very inspirational. Thanks.

31 years with a j pouch- for UC and colon/rectal cancer. Its not perfect but I feel I have adapted well. In the beginning burning butt and leakage and now gas and sometimes trouble emptying and throughout, intermittent pouchitis. I feel this is definitely do-able, and that U can have a good quality life.  It is my "normal", and I would rather have this option than the alternative situations.  One thing that has helped me greatly is a bidet and I highly recommend it for pouchers.  

I had uc for 10 years before having J pouch surgery in June 1984. I was the 13th in Scottsdale, AZ to have the surgery, done by Dr. Leff.  It took a long time for the pouch to settle down. Had a bag fora few months. Then suffered from dehydration. I love my J pouch and would not want to be without it.  From 1994 through 1999 I had a lot of problems (by the time we lived in Keizer, OR). I would go out to eat, feeling hungry.  Would order then when food came I could not eat it.  I knew I was very toxic and knew if they did not find out what was wrong I would die. Went to Dr. Lee in Portland, OR. I went to all sorts of doctors, and tried so many things. Finally Dr. Lee said there was one more test they could do. They put barium in my bladder and in my butt, then they filmed my elimination. It was discovered that my staples had come loose and I was eliminating from two places, so I was toxic.  I had my J pouch redone and I have been pretty well since then. Not perfect.  I leak, have to wear a pad everyday.  Have to be careful with my diet.  I exercise on a mini trampoline.  I have post polio, arthritis, stage 3+ kidney disease and have a lot of autoimmune problems.  I am now 76 and I am still so happy I have my J pouch even if I have problems at times.  However, I rarely get pouchitis. I wish you all well.  Do I have the oldest J pouch on the site?