Hi, January 2017 at age 8 my daughter had a colectomy due to her UC. Which would be part one of her 3 part j pouch surgery. She diagnosed with UC when she was 5. We went through all the meds, steriods, remicade, humira etc. all worked for periods of time. A few months before surgery her symptoms worsened and we started looking into entyvio. Unfortunately her symptoms came on fast and we ended up in the hospital for 4 weeks. After 4 weeks of trying to get her symptoms under control our doctors started the surgery discussion. At first we could t believe what we were hearing but we soon realized it was the right choice. We didn’t want her in pain anymore and we didn’t want to experiment either. The original plan was to do a partial colectomy because only the lower section of her colon was inflamed but during surgery they couldn’t make the remaking colon reach her rector so they ended up taking it all out. After surgery she had a ileostomy, the “bag” was very scary at first but she got used to it. The stealth belt helped a lot with feeling normal. Her next surgery was 4 months later were they reattached her small intestine, created a j pouch and new rectum. She still had her bag. Her ileostomy was now a loop ostomy. 4 months later she had her final “take down” surgery. The removed her bag. It’ll be a year in August since her last surgery and she is doing great. She goes to the bathroom 2 or 3 times a day. Which is much less than we thought. She’s had pouchitis once in the winter but that cleared up in a few days with some Cipro. We are very happy with the her j pouch. She living a very normal life now. We are happy we didn’t not try more meds. They just never worked for very long. Having a colectomy of course sounds scary and extreme but you can live without it and have a very normal life.
we were treated at Mt Sinia nyc Children’s hospital by dr Marla Dubinsky and her surgeon was dr Sergey khaitov. They saved my daughters life and gave her life back to her.
I hope all works out for you and you son.