Potential Problems After Surgery

by on Sunday, June 29, 2008 5:34
This entry is filed under: Ulcerative Colitis

Many people are concerned about the longevity of their jpouch. How long will it last?  What types of complications might potentially occur?  Here is a link to an excellent site that gives you really good in-depth and objective info on the Potential Problems Following J-Pouch Surgery

Image to the left shows the large intestine and rectum removed, the formation of the temporary ileostomy, and the jpouch.  The whole series of photos can be found by clicking on the following jpouch.org link.

Image via:  Jpouch.org

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35 Responses to “Potential Problems After Surgery”

  1. avatar

    John says:

    July 22nd, 2008 at 4:56 am

    Hi there, I had a j pouch constructed 9 years ago and after all the initial setbacks eg:-10 15 toilet stops a day, it settled down to around 8 to 10 visits a day and 1 or 2 during the night.
    Six months ago I developed a feeling of extreme tiredness and hot and cold sweats followed by vague abdominal pain, eventualy I collapsed in a heap only to find myself in emergency surgery for peritonitis. After the surgery was completed I was informed that the J pouch had perforated at the seam and the pouch had to taken down leaving me with a permanent Ileostomy. As much as this is disappointing I was wondering if anyone else has had such an experience. regards from John in Australia


  2. avatar

    mark says:

    July 23rd, 2008 at 3:07 am


    That is the first time I’ve read about a situation where the pouch tears at the seam – I bet thought you are not the only one that this has happened to. Have you ever shared your story on jpouch.org? I bet there we could find some more info out similiar situations as yours.

    How are you doing living with the ileo? I know Rob on who posted a few days ago is going in for a perm ileo soon for major cancer complications.



  3. avatar

    John says:

    July 24th, 2008 at 3:22 am


    I absolutley hate this Ileostomy, as much as I have to put up with it its awful.My surgeon said my quality of life should improve no end after a while and assured me I would be better off as I am. But I,m not so sure I mean it was real convenient to sit on the loo rather than mess around with this bag. But I have to wait and see as she (surgeon ) said I have to give it 6 months before I condemn the Ileostomy.
    Thanks for your interest regards from John


  4. avatar

    daryl says:

    November 8th, 2009 at 5:15 pm

    is there anyone out there with a jpouch that is experiencing frequent burning, i have regular bouts of what seems like my bum is on fire, creams and more creaams only work for awhile, what could be causing this? i have had my jpouch for ten years and i can handle the regular trips to the bathroom but this burning is holding me back from enjoying life as i should, there is no warning, it just comes on, please if you have any suggestions or experiences i would be eternally grateful. cheers daryl



    Mark Reply:

    Daryl, See below comment from Tim and myself.



    Christina Reply:

    You might have ulcers in your pouch. I’ve tried anti-heartburn medication and it has seem to fix things for me. Avoid NSAIDs for pain too.


  5. avatar

    Mark says:

    November 9th, 2009 at 6:49 am

    What you are calling “frequent burning” is what we all call so blatantly “BUTT BURN.” There are a couple things I could suggest for you to consider (1) Learn more about fiber supplements because i was told in the hospital to use Benefiber ONLY when I had the ostomy and to use Metamucil when ONLY when I had the takedown. Apparently Metamucil will make you too thick when you have the ostomy and works better after you have the takedown. (2) As for the butt burn when you get your fiber regulated, you might also want to try slowing your system down by using something like immodium, that will cut down on some BM’s. and (3) You might want to try NOT WIPING but pressing to absorb the waste and then use a wet wipe to clean the waste residue. (4) There are a ton of cream options out there and you might want to try exploring other options, I go inbetween being a fan of Tucks cream or my ultimate favorite cortizone cream. (5) And after 10 years why your pouch is acting up to give you BB is a bit odd so you may want to contact your GI and let them know. (6) Has anthing in your diet changed lately? Are you on any new medicines? I know when I eat poorly my BB acts up. Also over at http://www.jpouch.org, they have a great forum for BB related concerns and you will get lots of feedback there to maybe help ease your concerns. If you go to their “Find” section and type in burning, or butt burn you’ll find lots of pre-answered comments.


  6. avatar

    Tim says:

    November 15th, 2009 at 5:57 pm

    Daryl, had my pouch done in 1991 had my share of ups and downs along with a blockage needing a resection summer of 08. As I have gotten older my joints have given me some problems and with taking anti-inflamitory drugs my fanny will come alive with burning and in general great irratation. So I have taken them off the list of things to take. You might want to take a look and see if that might be a problem. The one ointment that has worked for me with all that we go through with our lower units is Calmoseptine ointment. Get in and see you Dr. Good luck.


  7. avatar

    Rhonda says:

    August 7th, 2010 at 10:12 am

    I had my j-pouch done in 2002 and I end up with a case of pouchitis like every six months. I also have the burning, it feels like my but is on fire and I aslo have a pain that I can not even begin to describe in my rectum every time I use the bathroom. Do anyone else have this severe pain?



    pamela brown Reply:

    ive had my j pouch 5 yrs and like you have had a lot of problems using toilet
    from 6pm in the evening non stop i am like a recluse and am considering going
    back to a bag and like yourself after an evening inside my rectum is in pain cant stand it anymore sorry your having same problems but bag was so much easier to cope with .


  8. avatar

    marissa says:

    September 29th, 2010 at 4:37 pm

    i have the bag.but my doc is saying i might can get the j pouch cause i am so tired of having the bag.so should i go ahead an get the j pouch or should i just keep my bag.someone help me out here cause i’m not sure what to do.



    pamela brown Reply:

    i can only tell you 5 yrs ago i was offered the reversal and after a long hard think i took the reversal…..today i regret it i have had more problems tha
    n i ever anticipated never expected it to be like this unfortunatly after lots of bouts of pouchitis and but burn rectum pain and frequent bowel movements that control my life night time incontenience the list goes on …..please please think about it carefully im going back to a bag it was easier to live with at least i was not confined to the house so much and im forced to sit on any public lav available and they can be horrible at times at least with a bag you dont even have to remove your underwear to empty ……i have cried at nights with lack of sleep as my frequency sarts at 6pm and continues all evening i have been in hospital had the pouch examined and its healthy ive treid all forms of treatment but nothing helps …if the bag is working for you keep it .



    mike Reply:

    no marissa, dont do it…here’s why: butt burn is so painful that I cant even begin to explain what it feels like. Imagine battery acid coming out your butt hole or imagine sitting on a camp fire bare butt! the only good thing about a jpouch is you dont have to mess with a bag but after a year with it i wish i would have kept the bag because i would not have to be using creams, vicodin, protiein/fiber to control the frequency of bowel movements and burning pain! with a jpouch you will be anchored to the toilet between 5-25 times a day depending on how much you eat.


  9. avatar

    lafem says:

    April 29th, 2011 at 12:38 pm

    J pouch surgery is NOT a cure. Fuck those doctor bastards. Get the word out to people necessary ? YES. A cure ? NO!



    Mary BEth Catterton Reply:



  10. avatar

    Beatrice says:

    March 4th, 2014 at 9:14 pm

    I found a direct link with BUTT BURN to be butter or margarine. Anything with too much butter caused a horrible on fire feeling and would have to soak in the tub, and sometimes use Nupercanal (sp). It went away when I just stayed away from excessive butter.

    In the beginning, carbonated beverages bothered me as well, but will have an occasional one now and then.

    Anything super spicy is probably  a BB after dinner, so try to stay away from that.
    I am so very happy with my J Pouch – what a life difference! Feel normal now.
    It did take a few years of softer bland foods, now is just about anything (but butter!)


  11. avatar

    robinsonkgvp.bloghi.com says:

    April 22nd, 2014 at 4:39 am

    I think that everything said was very reasonable.
    But, what about this? what if you wrote a catchier
    title? I am not suggesting your content isn’t good, however what if
    you added a post title to possibly grab a person’s attention?
    I mean Jpouch Life: Stories of Colitis, Crohn’s, IBD, Ostomy, Ileostomy & J-Pouch Surgery from around the world is kinda plain.
    You could look at Yahoo’s front page and watch how they create post titles to grab people to click.
    You might try adding a video or a picture or two to get
    people excited about what you’ve got to say. In my opinion,
    it would make your posts a little livelier.


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  13. avatar

    Dawn says:

    June 18th, 2014 at 4:58 pm

    Hello, is there anyone who has had MAJOR rectum pain from scar tissue after j pouch surgery? 4 different docs had told me to have the permenate illeostomy to avoid all the pain and pain meds. I also have fistulas with 3 Seton’s. Was not told that I could develops those nasty things before had surgery. I am quite the mess. Do not know what to do, I have no quality of life? Any advice would be appreciated!!!



    Brent Reply:

    Dawn, yes!! I have the exact same thing as you. Seetons, fistulas and knee bending pain in the rectal area. I did remicade -didn’t work now on humira -only the first 4 shots. I have had 5 surgeries in the last 6 months. The pain continues though. Pain meds work for about 2-3 weeks and then start to wear off and I’m back to the beginning… Right back to the ER, MRI CT, just to wake up with another seeton :(. I have a j pouch (from 1995) and don’t want to go back to a bag either just want the pain gone! Still fighting and still trying to figure this out with 2-3 different docs. Keep me posted if you found anything new!



    Chris Reply:

    Hi Dawn! Here we are in late 2015. Wondering how u are doing. I have similar problems. The surgeons & doctors never tell you anything! Get an illeostomy & then you most likely will be taking tons of Immodium & Lomotil along with having dehydration problems for the rest of your life! Bet the docs didn’t tell u this about the illeostomy they recommended!


  14. avatar

    Nancy says:

    December 26th, 2014 at 6:59 pm

    Had my take down on Sept. 10th.  I have major BB.  I also constantly feel like I am never empty.  Have been treated for pouchitis and on Dec. 3rd had an endoscopy of the pouch.  My pouch constantly contracts so they put me on an antispasmatic med.  I am still having so many problems, pain, pressure, frequency….all I can say is my life is completely controlled by my butt.  i hate to leave the house.  Does anyone else have this problem?  If so, how long did it last ? And is there really a light at the end of this tunnel or am I just headed toward darkness ?


  15. avatar

    Ann says:

    December 26th, 2014 at 10:49 pm

    I had my take down in August, 2013.  I have pain that is so intense that sometimes I am sure I cannot take anymore.  I cry  and cry.  My bum burns and I an constantly on the toilet.  I have not had a endoscopy yet but was treated for pouchitis in December 2013 with no results.  I don’t know if there is a light at the end of the tunnel either.  Has your doctor checked for anal stricture due to scar tissue or fissures?  This may be part of your problem.  I have read about dilation for the these problems and am considering this procedure to see if it helps.  I know exactly how you feel…..I thought the bag was bad but the pain we are experiencing is worse.  Hang in there and know you are not alone.


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  17. avatar

    Errol says:

    May 21st, 2015 at 1:48 am

    Had J-pouch done in 1996.Initially had lots of pain and stools could not pass.Total colectomy and pouch done in one go.Scar tissue caused blockage but after dilation it improved.I have completed a number of marathons


  18. avatar

    Debbie says:

    June 5th, 2015 at 2:56 pm

    I have had my j pouch for 15 years.  The first year of recovery was horrible.  Constant infections and then everything healed and i had a great 13 years.  Two years ago i got a fistula and since then, have nothing but problems with incontinence.  Has anyone had anything simular happen to them.  I am afraid that the fistula surgery really messed things up for me and i know i need to call my DR., but so dreading it.  Any advise would be great.



    Jed Reply:

    Debbie, your story is exactly like mine. I had total collectomy back in college, early 90’s at Mt. Sinai in NYC. Everything great for 15 years or so, then got first fistula, then all hell broke lose. After a bunch of temporary illestomys with no success I was referred to the Cleveland Clinic and surgeon Dr. Feza Remzi. Remzi deals mainly with Jpouch screw ups. 

    He decided I needed a pouch redo. So about a year and a half ago he built a new pouch and temporary illestomy again. Had the reversal done back in August. Now I have severe pain in an area where I never had it before, an inch or two above the rectum, in the middle of the butt crack area. Sometimes the pain gets so severe, I want them to put me in a medically induced coma, it gets really bad. Also had to have emergency surgery two weeks ago for a fistula. I used to get them where my thigh and butt meet, but now, came out right under my belly button. So now Remzi is trying to figure it out, will be taking another trip to Cleveland next week to resect yet more small intestine once I figure out how I can get there without sitting (lol). 

    Has anyone dealt with the severe pain in the butt crack area, who has a Jpouch? I’m wondering if the Jpouch sits in that general area. Any help will be greatly appreciated. 


  19. avatar

    Bryan Assata says:

    September 8th, 2015 at 1:46 am

    I had my first jpouch surgery in November of 2014. December 1, I was back in the hospital with a huge abscess. 5 days in the hospital, they went back in through C sec, drained the abscess, then left the drain in for weeks. I would then abscess about 4 more times over 9 months. There was a small hole in the pouch that only a pouchoscopy found a month ago. I have no more abscesses, and I’ve had the reversal. My anus feels like it has salt being poured over an open wound. Nights are horrible. I’m writing all of this at 3:30am, because the pain won’t let me sleep. I was running marathons, and working out 6 days a week before I started all of this, so I do not have ANY other complications that are plaguing me like diabetes, or weight issues of any kind. As a matter of fact I am doing the Insanity workout now. Just started that 2 weeks ago and liking it. However, I do not want to eat. The pain of deficating is so horrible, I would rather go hungry. Now, I was NPO for 2 months and on TPN bags, so I know what hunger pains are….and I would RATHER have those. Personally, I feel like I should have stuck to the Remicaid, and dealt with the horrible side effects, than deal with this. THIS-IS-HELL. If anyone is thinking about this surgery, PLEASE, PLEASE, PLEASE, give yourself a few months of serious research.



    Chris Reply:

    Hi Bryan. Sorry u are having such a hard time with J Pouch surgery. Just wanted to tell you I did not have any of the problems u did & they may have been due to the surgeon u had. As I’m sure u know, some are much better than others. I too was on TPN – over 6 months. I think your difficulties will smooth out & you will be able to live (somewhat happily) with your J-Pouch. I am curious – what kind of problems did you have w/Remicade?


  20. avatar

    Jesse says:

    October 5th, 2015 at 1:13 pm

    I am so sorry to hear that so many people are having the problems they are experiencing with the j-pouch. I had my takedown in February, and yes I had my share of burning sensations from going to the bathroom. It took about 4-6 weeks for it to finally subdue and go away, but it took some trial and error courses to fund out what I could eat and what not. I know everyone is different and will react to foods differently, but you have to utilize common sense in that matter. Not alot of spicy foods, not alot of caffeine, chew thoroughly and drink as much water as possible. I have had good success so far with my pouch, no major problems or issues thank God. I exercise regularly, take vitamins, try to take care of myself as best as I can. I had concerns in the first month after my takedown and wondered if I made the right decision, I fought through it and am glad I did. It can get better, and I hope it does for everyone in this forum.


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