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I have a great nephew, 14, who had his 1st  j-pouch surgery for FAP almost 8 weeks ago and has been thru hell. I can’t give details about all of his issues, I’m just hoping to hear about other peoples’ experiences with children to hopefully hear some ‘’light at the end of the tunnel’’ stories. He is in the hospital for the third time. He has had twists in his small intestine and blockages landing him in ICU and leading to a second surgery, problems keeping his ostomy bag attached, issues with anxiety and impulse control causing him to try to pull out tubes, he was already small for his age and is very under weight now, he has a tube in his nose for feeding purposes, he has little to no appetite. These are just the big things I’m aware of. Docs are currently trying to figure out what to do. His mom becoming very frustrated with the doctors. I had j-pouch surgery 16 years ago, but can add nothing to the conversation because I haven’t had any mechanical problems with my j-pouch. Any suggestions or insight appreciated. Hoping to give mom some hope that everything will be ok. On top of this his 15 year old brother will be getting the same surgery very soon.

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Oh that sound horrible. I had my j-pouch at 14 too. I have UC though and lost my colon due to a perforation. I didn't have any immediate complications and did pretty well with the actual pouch. I had a 3-step because of the perforation and the recovery wasn't fun but it wasn't nearly that bad - it took over a year from start to finish though. I also had leaking issues with my second ileostomy. I did have trouble later on with adhesions and a fistula but I have IBD and the perforation. People with FAP usually do better long term. 

Honestly it sounds like he needs social worker support. Is he in a children's hospital or can they setup something for him that is teen or child specific? It sounds like he is severely depressed and it's making his intestinal problems worse. Do they have any type of therapy animals at his hospital? Can he walk? It really helps keep things moving. Is his bag issue because he is leaking or because of his anxiety and him pulling on it? If it's leaks, an ostomy nurse should be able to give him lots of samples of types to test. I always had to use the two part systems otherwise I got leaks. 

I would tell them that he is still at the beginning. It can take 4-6 months to really recover from a major surgery. 6-8 weeks is the time to go back to doing some school or work not to being "normal". In the meantime, he can't get better if he isn't eating or walking, assuming he can walk. 

I hated that year of my life - imagine the SUPER low cut pants and short shirts of the early 2000s.... I missed 6 months of middle school, a year of high school, and ended up saying fuck it and getting my GED and going to college at 15-16 when I was recovered enough. 

Most of the time my pouch isn't an issue. It currently is, which is why I am on the forum, but I did 3 degrees, got married, have a kid, and travel. 

Shitty things happen sometimes when you have major surgery but the farther out you get, the less often this stuff happens. I went about 10 years without an issue. Things seem to happen on a 6-8 year schedule. This is probably more related to the UC or scar development though. They also happen in bunches because the interventions can cause issues. 

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