J pouch removal/failed

Joined
Jan 14, 2017
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Hi guys, this is my first post as newbie to this forum and I'm looking to hear experiences of people who have had failed J pouches removed.

Initially I was diagnosed with UC at 21 and within 3 mo the had surgery to remove colon and a temporary ileostomy. I opted for the J pouch surgery one year later however after it was connected I soon got diagnosed with pochitis and had to have my ileostomy again whilst things settled.

I've led a relatively healthy life with the ileostomy and bag over the last 8-9 years apart from a complication of pyoderma gangrenosum at my ileostomy site which took 18 months to heal.

Recently however I've had 5 or 6 abscesses and fistulas and around 6 operations mostly setons fitted which don't seem to be working atm. I've had 3 ops in the last weeks and things are getting progressively worse.

My surgeon believes the j pouch is the root cause of all this and has said it needs to come out, hopefully I'll be getting it done within the next month or two.

Looking for anyone that's had a similar experience or any other advise is very welcome.

Cheers
 
JBeadle, hello. I know your post is 2 years old but I came upon it today searching on peristomal pyro g. I too got diagnosed with UC at 21 and got a jpouch. Mine lasted over 20 years but then got really bad perianal issues so 2 months ago had an end ileostomy. My pouch is still there and jury is out on whether I need to have the 'Barbie Butt' surgery or just monitor the rest of my life. I do have mucus that comes out so have to wear pads for that. I don't have advice to offer but am hoping you might still be checking here and could let me know how you are doing. Did you have the pouch removed? Also, how did you heal the pyoderma? Are you on any meds? I have avoided so far but now my GI is saying pyoderma needs Humira. Thanks for your thoughts.
 

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