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Have you considered giving up your J-pouch and returning to using a colestomy bag?

Yes, and I went ahead and got the reversal.
Yes, I've thought about it but not sure if I will do it.
No, I'm still focused on making my J-pouch work.
Posted by Hockadoo ·

Comments (65)

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I'm sorry, but I totally disagree with your comment.  You make it sound as though having the Ostomy is such a bad thing and only if you are "demented" (not knowing what is going on) would you settle for one.  Every one of my Ostomy nurses actually had an Ostomy and many in the Hospital did as well.  The acid on my buttocks with all of the incontinence was much worse to deal with then having to figure out which appliance is the best for me.  Originally Posted by alykopy:

I am 11 years with my pouch for FAP and doing great!  I work in a hospital setting with many elderly who are incontinent.  I would consider returning to an ostomy in the future if I am ever demented and need to be physically cared for.  I do not believe it will be possible to keep someone who has 5 + bowel movements a day clean in a nursing home.  On top of being dirty, the stomach acid coming straight through would cause a serious decub wound which would never heal.  The pitfalls of my job include being able to imagine the worst case scenario for growing older!! 

 

Had my J-Pouch just over 12 years. In which the last 3 years of having it were the worse years of my life.  I am so happy that I decided to go to a permanent Ileostomy. No regrets.  Had a rough time after surgery, will not lie.  But I have always had healing issues, so I didn't really expect this to be any different.  Currently I change my bag 2x a week. It's a wonderful feeling knowing that I can be out and about and not worry about having to run to the bathroom every 15 minutes!  I am the third person in my immediate family to have an Ostomy. Please contact me with any questions.
Good luck.
 
Originally Posted by Hockadoo:
Originally Posted by Hockadoo:

JenA - I posted survey because I'm currently considering such a reversal and want to get a feel for how often such a decision is made. Failure rate on J-pouches seems to be about 5 percent to 10 percent, so would expect results to closely reflect that. The middle answer is the interesting one. 

 

 

Last edited by Tootsie

My j-pouch sclerosed after 5 years and failed completely at 10 years.  I wish I'd never gotten it and had stayed with the ileostomy I had between surgeries all those years ago.  However, I am back to a permanent ileostomy and my life has changed completely for the better.  I can travel, eat, work, and live without constantly worrying about accidents, where the nearest bathroom is, etc.  I'm happy to answer any and all questions for those considering the reversal. 

Have had it for about two years now. I've been having mild pouchitis lately that I'm trying to temper, but honestly, I feel like I had more PTSD from the 11 months of an ileostomy than from the 5 weeks in the hospital from a very serious acute onset of colitis. I despised the ileostomy, and the idea of having to go back leaves me at an absolute loss. I'd go through dozens of surgeries before I'd go for a permanent ileo.

Wouldn't it be an ileostomy for us, not a colostomy?

 

My j-pouch went "floppy" after 15 years and I now have reduced function and a distended abdomen. My surgeon has offered me the option of having the pouch removed and reverting to an end ileostomy. Still trying to decide on that, although if the j-pouch gets worse the decision will be made for me.

 

The big downside of the ileostomy bag for me was the skin irritation (where the wafer adheres). I still wince if I think of it. Ouch!

Last edited by Kushami

I don't know about you but I went through 4 surgeries to get this j pouch. Had a blockage after last one and they couldn't tell my family if I was going to make it. That was in 2001. Have had 3 surgeons tell me to get the outside pouch (one of which was the surgeon who made the pouch). The first two years he kept diagnosing me with pouchitis and said since I was having chronic pouchitis I should have outside pouch. I went through hell to get this and no way was I giving up. It made no sense to me! Explain to me why this is happening. Never received any diet information from anyone. None of the first 3 surgeons wanted to answer questions.  The 4th surgeon is my hero and was recommended by a long time nurse friend of mine!! He educated me on this pouch! He made drawings showing exactly how it was made. He also told me that its was not uncommon to have up to 20 bowel movements a day during the first couple of years because the pouch is stretching so I didn't have pouchits.

In 2012 the 3rd gi dr found a stricture.3rd gi dr and 3rd surgeon said  it couldn't be fixed only answer was outside pouch.  My 1st visit with my hero (4th surgeon) had researched and printed a procedure that could fix sticture. He said yes and that they had a gi dr who specialized in those kind of procedures. Was always so afraid of losing my jpouch. Finally I knew I was with the right doctors!  Now I go to a dietician couple times a year but most of all this group was the only help I had for 3 years!! I am so greatful that I didn't make any decisions till I found a surgeon who answered all my questions. My big brother told me after first opinion of outside pouch as I was crying, educate yourself before you make any decisions. That's when I found the jpouch group. He passed away of cancer Jan 28th of this year. God how I miss him.  But thank god for him and jpouch group. I hope this helps someone. It was hard to keep this short. Its been a long road.

Originally Posted by Dutchie:
Originally Posted by NoColonKen:

My pouch is 32+ years old, and I have only recently considered reversing it because I had a subdural hematoma (bleeding under the skull) caused by a combination of using blood thinners and having to push very hard sometimes to fully empty the pouch.  Stopping the bleeding required a craniotomy, which was not one of the things on my bucket list.  They basically cut off the top of your skull enough to stop the bleeding and then wash things out.  Much, much, worse than the ostomy.  I am off blood thinners now, but may eventually be faced with choosing the high risk of a stroke, or going back to having and end ileostomy.  I had one for 6 months before they created the j-pouch, leaving me with a loop ileostomy.  The loop is far worse than the end ostomy because of the skin irritation many of you mention.  A "well built" end ostomy sticks out just enough to make sure that what comes out drips into the bag and not on your skin.  I was so thrilled to be done with my sick colon that I would have been happy to live with the bag, even at age 22.  Of course, I knew that the j-pouch was the next step, so I guess its really hard to know for sure.  For now I will keep it, but I will keep talking to surgeon's about possibly un-doing it as the trade-off vs a stroke, and also just getting older need to be considered.  Recovery from surgery when you are 22, even a very sick and underweight 22, is much easier than it would be today at 55.  Waiting till I am 70 might not be the best idea.

I'm interested what you wrote about the subdural hematoma. I've wondered if that could happen but my GP blew it off. Guess I should find a new specialist since my Gastro has passed away.

 

The head surgeon and my Cardiologist blew it off as well, they said I must have hit my head or that the blood thinner just caused the hemorage.  I went to a top Neurologist here in town and had him look at the MRI without telling him my theory.  He said the blood was too symetric to have been caused by hitting my head unless I was hit exactly in the middle center of the head, which never happened.  I told him my theory, and he said "sure" people pop blood vessels all the time from (what I guess is called) Valsalva.  The difference was that my blood thinners were too strong, and once the small vessels blew, it kept bleeding until the headaches got so bad that I went to the emergency room.  The more I thought about it, the more I realized I might have had the same issue before I took the blood thinners, the difference being that the headaches eventually go away because your vessels eventually heal and the blood gets absorbed back into the stuff that sits between your skull and your brain.

My pouch is about 22 years old. It really has no issues at all. My Dr. said I was a best case scenario. It's just the freedom that the bag provided that I miss. I'm still apprehensive to go out for meals and outings but it's my own insecurities of using public washrooms that get in the way. I also worry about what will happen in my old age if incontinence becomes an issue. With the exception of itchy skin from the adhesive the ileostomy bag was no trouble. 

My pouch is 32+ years old, and I have only recently considered reversing it because I had a subdural hematoma (bleeding under the skull) caused by a combination of using blood thinners and having to push very hard sometimes to fully empty the pouch.  Stopping the bleeding required a craniotomy, which was not one of the things on my bucket list.  They basically cut off the top of your skull enough to stop the bleeding and then wash things out.  Much, much, worse than the ostomy.  I am off blood thinners now, but may eventually be faced with choosing the high risk of a stroke, or going back to having and end ileostomy.  I had one for 6 months before they created the j-pouch, leaving me with a loop ileostomy.  The loop is far worse than the end ostomy because of the skin irritation many of you mention.  A "well built" end ostomy sticks out just enough to make sure that what comes out drips into the bag and not on your skin.  I was so thrilled to be done with my sick colon that I would have been happy to live with the bag, even at age 22.  Of course, I knew that the j-pouch was the next step, so I guess its really hard to know for sure.  For now I will keep it, but I will keep talking to surgeon's about possibly un-doing it as the trade-off vs a stroke, and also just getting older need to be considered.  Recovery from surgery when you are 22, even a very sick and underweight 22, is much easier than it would be today at 55.  Waiting till I am 70 might not be the best idea.

Technically I guess I have thought about it, but I had such a bad time with my temporary ostomy that I hope to never go back. This despite bouts of pouchitis, unpredictable performance of the pouch, and never getting a full night's sleep. I guess this is the best of the challenging options. My uncle is a surgeon and says that many of his ostomy patients never want to be converted. I met a teenager who was so happy with his ostomy that he didn't ever want it taken down. I can't imagine being happy with an ostomy again, but the convenience it offers is appealing.

I had a very steep learning curve with lots of life changes due to having a  j-pouch, but even still I am much stronger and healthier than before the j-pouch and I hope and pray that I never need to go back to the colestomy bag. 

 

I'm curious why this survey is being conducted?

 

Thank you

JenA

I am surprised at the pain and suffering people will seemingly be prepared to put up with to avoid an ileostomy. I have had a pouch for 22 yrs now and for most of that I have been able to pretty do what everyone else does. Although camping is a bit tricky! However the last 3 years have been very tiresome with chronic antibiotic dependant  pouchitis, abscess requiring surgery, fistula, stricture causing blockage requiring several dilations and then feeling crap from the cipro etc. What might be the final straw is ruptured tendon that was weakened by cipro and surgery for that - currently 2 weeks in - and managing going to bathroom on crutches especially in the night. I am at a point that I think having a bag would allow me to just get on with my life and not worry about drugs, side effects etc. anyway I need to get over Achilles surgery first ! From what I remember as a young man the ileostomy was not a big deal Although I dId know it was going to be reversed Of course.the irony is I feel fine at the moment and pouch behaving but I'm completely crippled.  Anyone out there in a similar position ? Adam 

I'm 61 have a dysfunctional jpouch for the last 9 years since TD. I had this same conversation with my son and wife, if I couldn't take care of myself  one day I could never expect anyone else to be able to do what I do every day. At some point I'll most likely be back to a permanent ileo and it may be sooner than later.
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