Anna, Sorry about the news. Yes my DD had UC, now has a j-pouch. It was a rough road, but all in all she is a lot better without that darn colon causing all the problems. She went from diagnosis of mild UC to pancolitis to J-pouch take down in 9 months. None of the meds helped, they actually made her worse, as she was intolerant to 5asas. At that point we switched to the university hospital for a second opinion. The most important part about going down the surgery road is being confident with your surgeon. If I could do it all over again. I would have had the surgery done in Cinncinatti Colorectal Center, though I don't think any of the complications my kid had was her surgeons error. I don't know where you live but a qualified surgeon is kind of hard to find. I know a few people online (j-pouch.org) that had bad results due to a doctors mistake. I would ask a few question before hand.
If you choose to do the the surgery, what would the time frame be from ileostomy until takedown? Some people choose to keep the ileostomy for a while due to fear of Crohns diagnosis being so common with kids more than UC.
Will a mucousectomy be performed? I would research the method of the surgeon... Would they do a double staple anastamosis or hand sewn? My DD had a mucousectomy with a double staple anastamosis. Each surgeon is different and they have their methods that work for them. I would make sure you are comfortable with their method.
What are the risks with a muscosectomy?
Will the surgery be a two step or three step method?
How many J-pouches have you made? How many mucosectomys have you done?
Please feel free to PM me whenever you want.
FYI: If you chose to do the J-pouch I have a support group on FB and we have 33 parents now. Just let me know if you would like the link.
Below is My daughters story. She had a lot of complications that usually do not happen. But reading it might prepare you for the worst. So you know even after all that we have been through I do not regret the surgery, because she is now a kid again. She might not be normal but she is very happy.
Take care,