Hi everyone, have had a pouch for 24 years, the last few years have had alot of pain and too many toilet trips due to a botched procedure,the specialist has now given me the choice of returning to the illeostomy bag, but I've had 3 ops last year for bowel adhesions and am very worried this will cause more, and also I've heard that the pouch can create its own major blood supply and can be impossible or very high risk to remove, can anybody with a long term J pouch and reversal to illeostomy give me any info on what to expect?? Thanks, Heather
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Hi Heather,
I have had my jpouch since 1984 (at the age of 17).
Over the last five years, I have had a number of issues, such as partial obstruction, trouble emptying and butt burn.
After passing tons of tests, it was determined that my pouch was over stretched and no longer in the shape of a J. The shape was completely out of whack.
I was told that I could either move to a bag (ileostomy) or have jpouch reconstruction surgery.
I came across a fabulous surgeon who suggested I try an ileostomy prior to considering reconstruction surgery and see how I handle it (as well as see if the majority of my symptoms are resolved).
I was operated on in April 2013 and have had an ileostomy (bag) since.
While I must admit that I do not like having a bag, my quality of life has since improved significantly. The operation was quite minor (1-2 hours) and I have not experienced any ill effect. It was done lapriscopically.
I am scheduled for reconstruction surgery within the next month. This is major surgery which carries a lot of risk (70-80% success rate).
In any case, I do not want the bag and at this point in my life (I am 47) worth the risks.
If you have any questions or if there is anything I can do you assist, please feel free to reach out.
Good luck!
Solomin
I have had my jpouch since 1984 (at the age of 17).
Over the last five years, I have had a number of issues, such as partial obstruction, trouble emptying and butt burn.
After passing tons of tests, it was determined that my pouch was over stretched and no longer in the shape of a J. The shape was completely out of whack.
I was told that I could either move to a bag (ileostomy) or have jpouch reconstruction surgery.
I came across a fabulous surgeon who suggested I try an ileostomy prior to considering reconstruction surgery and see how I handle it (as well as see if the majority of my symptoms are resolved).
I was operated on in April 2013 and have had an ileostomy (bag) since.
While I must admit that I do not like having a bag, my quality of life has since improved significantly. The operation was quite minor (1-2 hours) and I have not experienced any ill effect. It was done lapriscopically.
I am scheduled for reconstruction surgery within the next month. This is major surgery which carries a lot of risk (70-80% success rate).
In any case, I do not want the bag and at this point in my life (I am 47) worth the risks.
If you have any questions or if there is anything I can do you assist, please feel free to reach out.
Good luck!
Solomin
Heather, high grade dysplasia in a critical area made it necessary to have my 30 year jpouch removed. I strongly wanted to avoid having the bag, which was a quality of life issue for me, and I was fortunate to locate a surgeon who removed the J pouch and gave me a BCIR (similar to a Koch pouch). The most difficult part of the surgery was the pouch removal due to significant dense adhesions from prior operations. My surgeon never mentioned anything about a long term pouch creating its own major blood supply and this is the first I have heard of that condition. All went well and I made a full recovery. I am now one year post-op and feel that I made the right decision.
I recommend that you get a second opinion before having any surgery. I am not aware of what is available in Australia surgeon wise or procedure wise. Here in the USA, the Cleveland Clinic is very highly regarded for dealing with difficult pouch problems. I have heard that they do remote consultations in which they review the complete set of medical records and make recommendations. No travel is needed, but another post I read recently said the cost was about $US 880. This might be worth considering. Best of luck to you.
I recommend that you get a second opinion before having any surgery. I am not aware of what is available in Australia surgeon wise or procedure wise. Here in the USA, the Cleveland Clinic is very highly regarded for dealing with difficult pouch problems. I have heard that they do remote consultations in which they review the complete set of medical records and make recommendations. No travel is needed, but another post I read recently said the cost was about $US 880. This might be worth considering. Best of luck to you.
Hi Heather
I am 34 years old, had the jpouch for 18 years and had it removed almost 5 months ago. Anal pain, incomplete emptying (the jpouch can "fall" making is impossible to empty), chronic pouchitis plagued me for years before making the decision to go permanent ileostomy.
I have ZERO issues with my ostomy, no issues with quality of life. I do what I want to do, eat what I want to eat and wear the clothes I want to wear. I don't even feel the bag anymore, and unless its full and time to empty, I forget it's there.
My surgeon was not able to remove my jpouch laparoscopically because of numerous adhesions, but I had a pretty good recovery. Having my butt closed up was not an issue either, that wound healed very well and extremely quickly.
Looking back on the past few years I don't know why I tried so hard to keep the jpouch. I should have gone perm ileo a lot sooner. No regrets with my decision, I am extremely happy.
Please PM me if you have any q's.
I am 34 years old, had the jpouch for 18 years and had it removed almost 5 months ago. Anal pain, incomplete emptying (the jpouch can "fall" making is impossible to empty), chronic pouchitis plagued me for years before making the decision to go permanent ileostomy.
I have ZERO issues with my ostomy, no issues with quality of life. I do what I want to do, eat what I want to eat and wear the clothes I want to wear. I don't even feel the bag anymore, and unless its full and time to empty, I forget it's there.
My surgeon was not able to remove my jpouch laparoscopically because of numerous adhesions, but I had a pretty good recovery. Having my butt closed up was not an issue either, that wound healed very well and extremely quickly.
Looking back on the past few years I don't know why I tried so hard to keep the jpouch. I should have gone perm ileo a lot sooner. No regrets with my decision, I am extremely happy.
Please PM me if you have any q's.
Hi everyone, thanks for your replies, I've decided that should I need one more adhesion op then I'll have the J-pouch removed, sick of the constant toilet trips and butt burn, plus the specialist said my bowel,which now has a partial prolapse is massive,due to all the work it has performed over the years, and it would have alot less work on the bag. I have been depressed lately as all my meds were stopped for a year due to bad liver blood tests, but now have been restarted a few days ago, so I don't want to rush into a decision,and I don't want more surgery, unless like I said no choice, thanks again, Heather