I'm not on here very often, but today I need to find some information. My son, while being 24, would never do this, so someone has to. Was diagnosed with UC when he was 6 years old. Had lots of exerbations as a child, at least one a year. Things calmed down around age 15. And then, he decided he didn't need to take any meds any more. Well, we know where that got him. fast forward to December, 2013. Found a new gastro guy, he needed a colonoscopy, since it had been about 4 years. Something was nagging me in the back of my head. Good thing. Did a bunch of studies, had a colonscopy in February, 2014. Well, they found significant inflammation and took out a few polyps that came back as precancerous. So, off to the surgeon. He says the large intestine has to come out. Pretty standard stuff so far. Got a second opinion at Fox Chase in Phila, same answer. Ok, surgery set for June 2014. My son had to lose weight before the surgery, seriously overweight and a surgical risk. Did it. Had the surgery and a j-pouch done at the same time. Dealing with the illiostomy was very difficult for him. He also has Aspergers with a bit of OCD, and sensory integration. So, when I saw difficult, you have no idea. We get through the summer and get ready for the takedown surgery. Takedown in SEPT, 3 months after original surgery. Surgery goes well. Pain is kind of controlled, and no apparent complications. So we thought. Go home, do to post op visits and he is complaining about a lot of internal pain. Chalk it up to post surgical. Because of my son's autism, it's sometimes to get a straight response from him. He would tell me he was in tons of pain, and tell the doctor he was fine. Took a while, but finally in November we went back to gastro. He repeated the capsual study and did an abdominal CT scan. Day before Christmas (things move slow in NJ I think) I get a call from Gastro that I need to get my son over to the hospital immediately. The capsule study was great, no blockages, twists, nothing, so that was good news. The CT scan, not so good. They find an orange size abscess on his pelvic bone. Not sure if it's in the bone or on the bone. Ok, it's Christmas, I'm not going to the hospital, our holiday. 48 hours is not going to make a difference. Ok, but let's put him on heavy antibiotics by mouth and when we get to hospital, go with IV. Ok. Get to hospital day after Christmas. We get him settled, they hook him up and now the troops start coming in. The surgeon is in Europe on vacay, so the surgical residents and dept head comes in. Then Gastro comes with their residents, med students, fellows, etc. and now Infectious Disease, the top person with her residents, fellows, and students. Did I mention, you NEVER want to be in a hospital between Christmas and New Year. Or on the weekend. I forget the exact timing but somewhere along the way, interventional radiology joined the party too. They decided they needed to culture what bacteria we were dealing with and drain the abscess. Nothing grows except for a "rare, unidentifiable " fungus. So far, they can't find the fistulia. Drain goes in, lots of junk comes out. Two weeks go by, surgeon is back from vaca and he orders a drain study and her comes the fistulaa connecting the abscess to the J-pouch. Things can't et any worse, or so I thought. Gets admitted right then and there. Drain is still in his back, near the base of his spine, hurts like hell. Now the want to give him a mild bowel rest, so in goes a pick line and TPN. This is mid January. So now I need some opinions/advice. We did a pouchoscopy two weeks ago and it looks like all is well. No tears, leaks, nothing. Last week, we do a fistula gram and well, it did not go so well. Dye was injected into the drain and went right into the fistula and directly into thej-pouch. Worst of all news. Looks like the illiostomy is coming back.
has this ever happened to anyone else? My surgeon had a call will Dr. Remzi in Cleveland Clinic. (I go right to the top). The first step is to put the illiostomy back for six months. Next steps after than is a bit unclear. We talked about a plug, glue, and a few other unproven options. Rebuilding the punch is not a viable option as there is not enough small intestine to work with, so this one has to heal. However the only way to find the leak is from the inside. I'm glad that I'm at a hospital with a medical school, because the surgeon has the students doing all kinds of research. That said, there are no approved studies for what needs to happen. I asked about European studies, haven't found any. Anyone have any ideas? Suggestions, thoughts. I'm open to anything at this point. I just want my son healthy.
