Posted 6/12/2012 12:02 AM (GMT -6)
My daughter was on the schedule today to have her 2nd surgery, to close up the loop ileostomy, connecting up the j-pouch. It didn't happen.
In December she had her 1st surgery, a colectomy and J-pouch formation in 1 operation, and had many complications. She had an abscess and went home with a J-P drain in her butt cheek, then had a larger drain put in , then readmitted for drain repositioning, then caught the drain on a kitchen drawer and yanked it out so had to have it reinserted. It turns out the abscess was probably caused by small connection (opening) at the pouch anastamosis that never healed. She finally got the drain pulled out after 3 months when a CT scan showed things looked like they were healed. 6 days later, she was back in the hospital because there was a "collection" of infection in the same spot. A month later, an MRI showed the "collection" was slightly smaller. So she has been on antibiotics for 6 months and of course had to cancel the takedown surgery since there is probably still a tiny opening at that same place. She seems to be handling all this really well, but as her Mom, it is really tough. One disappointment after another. She delayed going away to college for 2 years due to UC and the surgery, but has managed great at the Junior College. She is now planning to attend a University 1 hr from home. We thought she would have the whole summer to adjust to her new J-pouch. Instead, she will keep her loop ileo another year, hoping this problem heals. So today was a sad day for us and I don't really talk to anyone about this, so thanks for listening. Fortunately, she does great with her ileo and is in minimal pain except when she exercises too hard. So, first I want to say what a wonderful and helpful place this is and being able to know she's not alone in her problems somehow helps. Second, should I take her to Cleveland Clinic for a 2nd opinion. I hate the idea of exposing her to more CT scans so they can have a look. She's had about a dozen CT's and fluoroscopies and that amount of radiation worries me, too. Thanks again.
Diagnosed 18yo, 2/2010 (after Z-Pac for URI, Amoxicillin for strep), Hospitalized 3 times in 2010. C-Diff 3/2010 Failed Meds: Remicade 10mg/kg q 8 weeks, Azathioprine (Imuran) 175mg, Cortisone enemas, Prednisone 3/2010-12/2010, 5/2011-9/22/2011 flared 10/2011.
Surgery 12/16/2011 colon removal, J-Pouch formation, loop ileo. Abscess, leak at anastomosis, drain 4 months,antibiotics since surg