Had 1st step (colectomy, pouch formation) in Nov. 2010 and ended up in the hospital with multiple complications for right at a month. Had a PICC line until almost the end of December.
Had a pouchoscopy in February 2011 hoping to get a date for takedown surgery but instead they found a leak in the pouch. Two exams under anesthesia were performed in which they attempted to fix the leak. Finaly the leak was apparently fixed and takedown surgery was scheduled.
Takedown was performed in May 2011 and it seemed to go real well pain wasn't too bad and I adapted quickly to the pouch.
After a couple of months passed my ostomy site started to swell up and hurt (they had left it open to heal from the insie out and it had finaly closed off) pain got pretty intense and finaly it opened again and released a large amount of fluid. Saw the doctors about it and the wound was not inflamed or infected so they just said to keep track of it and let them know if it didn't heal up or if it started showing signs of infection.
After a few months and some CT scans I ended up back in the hospital January 2012 it had turned out that the problem was a fistula from the pouch to the ostomy site.
A bunch of tests were performed and I was sent home with a PICC line and lived on TPN for 5 weeks. This did not help and the fistula actually got worse, now I was wearing an ostomy pouch where before I could always control it with gauze and tape.
Had surgery April 16th 2012 in which they disconnected and repaired the pouch, cleaned up where the fistula was and gave me a temporary end ileostomy. Ended up with another leak in the pouch this time where the pouch is attached to the rectal cuff.
Went in for a CT scan a week ago and it looks like the part of the intestine leading up from the pouch (not connected at this time) has a leak which allowed the contrast fluid from the CT scan and pouchoscopies to leak and form an absess which in turn got infected so now I'm back in the hospital with three drains and IV antibiotics and no clue if/when I'm ever going to have my takedown surgery.
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