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hello everyone.  i had my j-pouch surgery 20 years ago.  shortly after, i developed a fistula, draining close to the anus on the right cheek.  it drains, heals over, builds up, then drains.  and the cycle repeats at least once a week, depending on how active i am: ie; if i go for a run, it develops quicker.   my doctor attempted a few times to fix it (he retired).  my new doctor tried to find the source but could not.  he did an MRI and said he could try again, but no promises.

 

anyone else out there with a fistula story ??

 

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Me too!  Mine developed about 18 years into the jpouch.  My fistula exits in the perineum, just below the vag. opening.  To avoid the cycle, I have a seton in mine to keep it open/draining.  It's also supposed to help healing (but --- OF COURSE --- not in my case).   They can be tricky to find, hope your dr. is able to find it.

Originally Posted by Brewbirds:

hi brewbirds..  my doctor says he's seen evidence of pouchtitus.  but i've never taken anything for it cos i never know when its happening.  i just eat a whole lot of spicy hot foods, garlic, ginger and onions.  

and no, no abscess,.. the area just builds up like a large pimple and pops.  but most of the time, its draining.  its just very inconvenient cos it can get uncomfortable while its waiting to be pop'd.

 

hope all is well with you. !

My son has a duzy of A tale!  In June 2014 had a colonectomy with a j-pouch creation.  In September 2014 they put him back together.  In NI ember he was in so much pain they did a bunch of studies and found nice size abscess.  Rare unidentifiable fungal infection they said.  In January, they found the fistulia.  It was connected to the abscess and the pouch, but where, no one had any idea.  In March it was decided to take him off the pouch and put him back on the ostomy.  as of June 2015 they knew there was a leak in the pouch but the doctors could not find it.  They did countless MRI's, and CAT scans.  Unfortunately in May my son was diagnosed with PSC and we needed to have an entire new team of doctors.  We left our local medical school in NJ and had to go in NYC.  The new team, redid all the studies our other doctors had done, and in August, found the leak!  It was had to find, located at the bottom, I think at the cuff and in the back, so it is not easily seen on any imaging.  I don't know what they did or how they did it, but they found it.  They put in a mushroom drain, and it has since started to close.  Next week, my son is going in for a pouchoscopy to see if it has closed completely.  I don't know what the next steps will be.  But I think we are finally on the right track.  Good luck!  I don't know how you have lived this long with the darn thing!

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