Oldest People with a J-Pouch?

Not sure if a k pouch et is qualified to answer the question but...

I had mine done at 18...I am now 55.

The pouch itself ages fine, it is all natural intestinal tissue.

The issues that I have had over the rescent years were more related to post menopausal aging and muscle breakdown (hernias), adhésions and assorted complications. 

I think that as time goes by I deal with more inflammatory issues but those are more related to my disease than the pouch itself.

My surgeon assured me that I had nothing to worry about as far as aging is concerned (there are pouches who had theirs done in their late 60's)...so for now I will trust that he was telling the truth!

Sharon 

I will be 61 this year and have had my j-pouch since 1995, 21 years this year. Many of us develop chronic issues after 15-20 years. I think the oldest member here is around 80.

Jan

My husband is 56 year old. He has had his j-pouch for 23 years.

I am 50 yrs old and have had mine for 31 years. I don't suffer from any chronic issues so far, thank goodness

I am 55. Have had my jpouch for 16 years. Struggled with pouchitis on and off over the years. Now struggle with cramping, pain and urgency. Can any of you long time pouchers share your daily diet and maintenance medications, both prescription and OTC. 

Thanks so much!!

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I have not found diet adjustments helpful for me. The last year or two my occasional pouchitis became chronic. Currently I rotate Cipro, Flagyl, and Xifaxin with good results. I also take Azulfidine. I was on various biologics for arthritis in the past, but because of the pouchitis I recently started Imuran and Remicade. Hopefully, I can wean off the antibiotics after a few months.

Jan

Diet adjustments with my old pouch never seemed to do much good either - it just seemed there was no rhyme or reason as to why things would go south at one time or another.  Just my two cents.

53 years.... had my pouch for 3 years.  I try not to let it "define" me and I have very very limited complications... maybe mild pouchitis once a year.  The rest of the symptoms I can live with and hardly notice.

thank you for the replies!

Its been 35yrs for me, always did good until age 45. I now have chronic pouchitis, chronic diarrhea. Food doesn't agree with me ,  Vicodin & tincture of opium is all that works for me now. 

Thank you for all your responses. I'm so glad I've found this forum. 

I've been trying so many things. I work in a pharmacy and the pharmacist is so helpful with suggestions. I was drinking Metamucil daily. He suggested I stop and try Equalactin instead for diarrhea, constipation and cramping. Didn't seem to make a difference. At the suggestion of Jan I ordered Heathers a Tummy Tamers. They're more helpful than anything else so far. I have taken both hydrocodone and Percocet which were my husbands prescription. I was so desperate for relief ! Wow. It certainly did the trick. But don't think I want to be taking either on a regular basis. Some days I'm so miserable, I just don't want to eat. 

I'm 75 and have had my jpouch since 2001.

Like you, Mrs. P, some days are miserable for me. I've been having horrible gas pains that shoot from my stomach to my rectum and trying to expel it without pooping in my pants is impossible.  I'm using the Tummy Tamers as well, and they do help. I've been on amitriptaline (sp) for about six weeks now, and I think that between the two, I'm feeling a bit better except for the unexplained blood that I had tonight.   Wonder what it feels like to feel good every day. Never a dull moment that's for sure.

so great to see some people a lot older than me who are functioning still with a pouch.

We are out here - as you see - it's gets a bit tougher for some of us old timers as we age with pouch - but - we'd be dealing with something else at this point.  My 30 year pouch really did do great for a long time -and now, even though I wish I felt great all the time - I have come to terms with the fact that I just don't.  People deal with chronic health issues all the time - often, many more are dealing with something.  I am 53 and at times do feel about 15 years or so older - just years with the pouch and health issues - that said, I think it makes me a bit more prepared for how much fun this aging thing is going to be.  No one promised us any of this would be easy - but I do agree - it would be so nice to feel really really good for just one day - just one day to feel young and pain free all day long!  Wow - I can't even remember it! To all of you young folks - enjoy every second that you can - even w/ your pouch.  I sure did.

I'm 47 but my uncle has a j pouch also and he's 72. He had his surgery at 55. He's doing very well.....always has. 

My sister has a j pouch too. She's 59 now and had her surgery at 32.  No issues. 

I'm 59 and have not been on the forum for awhile. Just had a recurrence of proctitis. But mostly I've done well. 

 I'm 68. Converted from J pouch to a K  six months ago, after 16 years of a nonfunctioning J.  So far things are going well for me, finally.

I'm  60 and  have  had  a  j pouch  for  16 years , no problems  till  three  years  ago  I  got  ischemic  bowl , had  to  go  back  to  the  bag  and  one  year  later  I  had  the  take  down , which  was  a  nightmare , I  developed  a  enterocutaneous  fistula  and  for  two  more  years  of  hospital's  and  nursing  homes  UCLA  fixed  the  Damm  thing , that  was  8 months  ago  and  no problems , outher  than that  it's  been  a  lot  better  than  the  UC.

I am 59 and had my jpouch for 32 years. Lots of adhesions. Over 30 different surgeries. Over 40 ER trips for obstructions. Taken everything. A high school coach for 37 years. Four boys. Still coaching them. Deal with the pain and keep on living!!!

We sure do deal with a lot. I'm impressed with the tenacity of this group. 

I'm 51 and have had a J pouch since age 30.  I have had minor problems over the years but more years with no problems.  In the last few years though, I've had problems with adhesions and small bowel obstructions.

My brother has something similar (maybe a J pouch, maybe something else ... just don't know what it was called back then).  He was diagnosed with U/C at age 8, had the surgery at age 9 (one surgery process) and he's about to turn 60.  He's had no significant problems and has successfully had his FOR 50 YEARS!!!

It is my mother's understanding that he was one of the first in the area (Cincinnati, OH), or perhaps the US?, to have the surgery.  He is asked every few years to return to Cincinnati as a volunteer to be examined/evaluated since his procedure was performed so many years ago. 

Is it a K pouch?  Does he need to intimate it?  Amazing 

I have no idea; not even sure if he knows.  It was done in one operation and he had many complications.  Between being extremely ill when he was first diagnosed and the complications from the surgery, he spent about 6 months (over the course of one year) in the hospital.  

Once he stabilized, over that year, he has been relatively symptom free.

I've had far many more complications than he has!

Angie Wilson posted:

We are out here - as you see - it's gets a bit tougher for some of us old timers as we age with pouch - but - we'd be dealing with something else at this point.  My 30 year pouch really did do great for a long time -and now, even though I wish I felt great all the time - I have come to terms with the fact that I just don't.  People deal with chronic health issues all the time - often, many more are dealing with something.  I am 53 and at times do feel about 15 years or so older - just years with the pouch and health issues - that said, I think it makes me a bit more prepared for how much fun this aging thing is going to be.  No one promised us any of this would be easy - but I do agree - it would be so nice to feel really really good for just one day - just one day to feel young and pain free all day long!  Wow - I can't even remember it! To all of you young folks - enjoy every second that you can - even w/ your pouch.  I sure did.

Amen to that!

I'm also 53, it's 35yr pouch for me and tired of going to the bathroom. Wish there was a magic pill to stop the chronic diarrhea.

I remember the doc telling me when I get older it's going to get more difficult, I didn't realize how much. But life is what you make it, work through it and try to laugh.

Whoops that was AutoCorrect going crazy – – intimate was supposed to be intubate, as in inserting a catheter in the stoma. If he hasn't mentioned  such a process, then it sounds like he has the first J pouch around. Very very impressive

He doesn't have to do anything like that.  Just multiple BM's a day, like me.  

 I also wish to mention that I am sorry  about the extensive G.I. problems in your family and especially at such young ages. I am the only one in my extended family that has UC.   At least they understand your problems.  

I trust you have spoken with the dietitian about the diarrhea. In the past and always help me to keep a food diary.  What really helped was going  out of town and off my regular foods. Sometimes I feel much better, and realize that I have been eating the wrong foods but could somewhat tolerate them and get by. It's hard to get yourself off of food that you think is not detrimental   But sometimes it can be a problem.

YTcrockpot, whoa almost neighbors. 53 had mine 30 years ago.

deweyj posted:

YTcrockpot, whoa almost neighbors. 53 had mine 30 years ago.

We should chat further deweyj lets email 

ytcrockpot@yahoo.com-Yvonne 

1. Was diagnosed with Uc in 1994. Had colectomy in 1995 with j pouch and hook up 2 months later at OHSU in Portland Or. I have had my j pouch for 21 years. I have had numerous problems throughout the years. I am finding out that I have more issues the older my pouch gets!

I  believe our oldest member is Gloria.  She had her jpouch surgery at age 69; she is now 83 years old, I believe.  I've met her in person; she's amazing.

Sue

Whew!  For a minute there I thought that I might be the oldest. I'm 70 and have had mine for 8 years. I have nighttime leakage problems but I don't think j-pouch problems are particularly age related. (Go Gloria!)

Hello. I am 36 and have had the J-Pouch since I was 16! ( wow 20 years)  

  The initial diagnosis of UC was life threatening and the surgeries  (stoma/ colostomy bag then reversal )  were necessary for survival.  Dr Stephen E. Dolgin (Mt Sinai hospital -NYC) and Dr Stephen Gorfine were EXCELLENT and saved my life! 

Since overcoming that, I have been very blessed.  I Played division 1 basketball, married my college sweetheart, am a high school Physical education teacher and coach  and a mother of two awesome little girls (via requested C-section...I did not want to take any chances Bc I have had such a successful j pouch )  

Thankfully, I have NOT had any issues with my pouch and pray that I don't.  

 I am so glad to have found this forum and to see the success of the j pouch among so many of you. I was having a difficult time finding data about long term j pouches and am wondering how to optimize my health further.

Although I am healthy, I can't help but wonder if there are things I should be doing to better my health and wellness (in regards to me not having a large intestine). What data is out there regarding what I should and should not be consuming, (I.e. Because my body does not have a large Intestine ... I should avoid XYZ). 

Perhaps, going gluten free may further help my j-pouch success rate and my overal nutrition?!?! 

Lastly, I understand that my children have a predisposition to having UC ... And symptoms of this nasty disease usually appear between ages 15-30 ...Is there anything i can do (vitamins, diet,etc) or not do (avoid certain foods , ) to lessen their likelihood of having UC ?

thank you all for sharing and providing input  

Best Wishes, 

Michelle. 

Welcome, Michelle. I'm glad you're having such good success. About the only things (based on science) that *might* be worth doing are avoiding NSAIDs when you can and (perhaps) reducing sugar and other carbs. On the other hand, pouches don't really seem to have trouble because of their age. The longer they're around the longer things can happen, just like every other body part. Even avoiding the carbs may be more trouble than it's worth, since you don't seem to be prone to pouchitis.

The risk of UC your girls face just isn't very high, though it's somewhat elevated and varies a bit by ethnicity. Most UC isn't familial. Call it 5-6% or so, if you don't already have other affected relatives. I don't think anyone knows of any effective preventive measures.

Scott F posted:

Welcome, Michelle. I'm glad you're having such good success. About the only things (based on science) that *might* be worth doing are avoiding NSAIDs when you can and (perhaps) reducing sugar and other carbs. On the other hand, pouches don't really seem to have trouble because of their age. The longer they're around the longer things can happen, just like every other body part. Even avoiding the carbs may be more trouble than it's worth, since you don't seem to be prone to pouchitis.

The risk of UC your girls face just isn't very high, though it's somewhat elevated and varies a bit by ethnicity. Most UC isn't familial. Call it 5-6% or so, if you don't already have other affected relatives. I don't think anyone knows of any effective preventive measures.

Thank you for your reply, feedback and suggestions. I really appreciate it. 

Best wishes to you on this J-pouch journey. 

I'm 75.  Had my proctocolectomy in 2001 and my ileostomy takedown a  year later.  Decided to wait a year because I was having a wonderful experience sans colon and with the ileostomy.  Almost didn't go through with the takedown!  Things are fine.....not perfect, but I adapt well and keep my expectations reasonable. I know what is "normal" for me!   Whatever I am experiencing is sure a lot better than full on ulcerative colitis!

Good for you - great attitude and yes, expectations are key. UC must be so awful..glad you are not dealing with with it full on anymore.  Glad the pouch helps.  Thanks for your great attitude.  I needed to hear it - having a bad night - but this too shall pass

I'm 45 and have had my pouch since 19... So my pouch is old (26 years) though I'm not over 50 yet. 

My age is 82 and acquired pouch in 2000.  Experienced one instance of pouchitis and that was related to excessive use of NSAIDs some time ago.  No restrictions on diet or drink.  I get a scope exam every two years.  Work done at Cleveland Clinic -Dr. Church.

Pouch has given me freedom and peace of mind.