Supposed to have takedown surgery today but...

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.

So sorry, how disappointing. Great that she's handling it well, though; not an easy thing to handle, for any of you.

I think getting an expert second opinion at a place like Cleveland Clinic makes a lot of sense, and doesn't necessarily mean more CT's -- you can forward her records and maybe it'll be enough to look at her old ones.

Was she on a lot of prednisone? Looks like she might have been.... that can really interfere w/healing, but you also want to make sure that there isn't something else going on. Different situation, but I had a wound that didn't heal for 7 months after my surgery (had an abscess right after surgery)... turned out that something was in the wrong place, and I needed another surgery to correct it. Hope that's not the case for her...

Is it possible she has a fistula of some sort? Just wondering what would cause things to keep getting reinfected.

Hang in.

Mystique 2: Thanks for your prayers.
Blueglass:
Each test report calls her issue something slightly different. Most recent is "Anastomotic dehiscence and presacral abscess formation, recurrent trace anastomotic incompetence." Apparently there is a hairline area at the pouch anastomotic staple line that is hard to see that either does not heal or heals and reopens. She actually had to flip from side to side really fast during the dynamic proctography for the little opening to actually open up and show the contrast material flowing out from the pouch to the presacral space that the surgeon refers to it as a pocket (of infection). I think "fistula" is similar but means an abnormal passage from one epithelial surface to another, e.g. pouch to skin.
Scrap Girl:
Thanks for the link. I actually did the online second opinion prior to her surgery, hoping to treat her UC & last minute avoid the surgery. By the time all the reports, CD's of test results got there, she had so made up her mind that she wanted her colon out, that she did not want to delay the surgery so she did not even try any of their suggestions (which they realistically said had only a low percentage chance of working). But that is a good idea to do the online 2nd opinion now, while we are just waiting for things to heal. She decided herself that she should wait a year for surgery. She did not think she could adapt to the j-pouch & get back to classes 3-4 weeks after surgery, esp. with her history of things going wrong : ( She thinks it will be too depressing to take a semester off of school.

I also agree that you should be able to get a second opinion without going through all the scans again.