Have you considered giving up your J-pouch and returning to using a colestomy bag? 371 Responses

This is a fascinating discussion. Prevailing opinion here is that people want to keep their pouches, regardless of what it takes. Some woman said she has had her pouch for 22 years and had no problems. I didn't even know people like you existed. I figured everyone has some complication from takedown. Meanwhile, I posted a topic in forums about this same subject and several people (albeit a much smaller sample) responded that they not only had reversal done but were sorry they had waited so long.  And check out this post from that thread: "I hardcore terrible cuffitis and fistula problems and eventually a Crohn's diagnosis.  I too was on Remicade. Long story short, I had my 15 year old pouch removed and a perm. ileo. in April 2014.  I'm doing amazingly well!  I agonized over the decision for YEARS.  For me, it's the best decision as the pouch and cuff are gone, so are any pills, pain and doctor's appts.  God is so good!" If nothing else, this all shows the breadth and depth of what people experience dealing with ulcerative colitis. 

I have had mine 6 years and would never think about going back. I have had a few struggles but they were short lived and caused by poor dietary choices. For anyone struggling I would suggest working with a nutritionist. 

Had my pouch since 1996, would never go back to the bag again, worse 3 months of my life.never really had any problems with the pouch.  

I have had my pouch for 6 years and I really can't say that I've had any problems with it other than those I have self inflicted. Hopefully as I get a little older and perhaps a little smarter I will take better care of my pouch so it will last me the duration. I have it checked by the surgeon every 2 years and so far everything seems to be working as its supposed to. (Perhaps a silencer for the gas would be a useful add on)!

My 9 year pouch has been dysfunctional since day one. No matter what I do I can't empty it without the use of a laxative. I take lactulose after each meal to help me poop. I also have trouble controlling pouchitis and don't know what to take for that anymore either. My GI has given up on me and referred me to a surgeon for an ileostomy but I really don't want to go back to the it but feel I may be forced to soon.

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 am very happy after 34 years with my pouch!

I cannot imagine going back to an ileostomy.  For the three months I had mine I was in misery.  We were never able to find a wafer that did not leave my skin raw and bleeding, and because the site was so compromised the wafers would not stay attached Every change was agony.  I still have scars.
Nope, nada, never, noooo!

that option was also told to me  something i need to have a serious think about being only 18 years old and having to put up with the nasty effects from ulcerative colitis since the age of 6 , but new research is being investigated even as we speak there is a new one coming out soon for crohns disease ,  a 3 combined antibiotic therapy either already out or about to , so i think i will hang in there for a bit longer and see if a treatment option comes my way or if my J pouch will settle down on its own either way i do believe i will not have my pouch removed unless every single treatment was exhausted first .

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.

The first year I thought about it but then things got much better

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.

I would never ever reverse my j pouch.  Having the bag was beyond depressing and I struggled to want to live during that time. I've had my pouch for 18 years and am totally normal in my eyes. 

I have now had my J-Pouch for 25 years, 10 years in I acquired my first fistula and now have a total of 5. 2 bigger, 3 small. They are a pain in the butt and need a lot of care. Like most people commenting, I would not want to return to an ileostomy, even with my fistulas. I did do 8 months of remicade, 5 of those at a double dose - for some reason they thought the fistulas would close. I will not do that again or Humira as advised - these drugs have too many side effects that I have had to deal with.

The only reason why I was thinking about an ileostomy is at an overall check up and seeing if any new progress was happening with Crohn's at Cleveland Clinic, they had informed me of something new that they were seeing with long term Pouchers - Cancer in the pouch. Very aggressive, very non treatable. When I inquire about an ileostomy (which would be a way to avoid cancer), I'm told that they would not do it. Very complicated and the recovery is grueling.  Now the cancer fear is always in the back of my mind.

I've had my jpouch for 16 years and have never had any real problems. 

 

Had it for nine years...don't even remember i have it unless someone mentions it.  Have set powerlifting state records with it...eat any and everything I want.  Has been a God-send for me after 13 years of suffering with colitis.

Had the reversal in 1988 one year after ileostomy. At first wished I did not go for the reversal as pain of closure of ileostomy was awful but I'm sure I am the exception to the rule here. Overall very pleased but just have to watch what I eat. In the 28 years I have had, I have only has 1-2 bad stomach aches. No idea how long these ppunches are supposed to last but I think mine was a W or S pouch... Not sure.

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!

I continue to have pouchitis / cuffitis.  I have had my j-pouch for over a year, and it has definitely been a roller coaster.  I'm currently on weekly injections of Humira and I've been on prednisone since April.  Every time I try to tapper off the prednisone, I go into flare mode.

It would have to get really, really, really bad for me to go back to the bag.  The 3 months between surgeries when I had the bag was one of the most depressing times ever for me.

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

never change back

My 20-plus year old J-pouch works fine and I am 1,000 times better than before the surgery.