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Hi, my son who is now 6 had a total colectomy last March. He is doing very well now, only on Loperimide now instead of the 6 different medications, including prednisone, that he was on pre-surgery. He had the surgery done laparascopically and the surgeon just hooked his small intestine back up to his anus, no bag. He controls his BM's very well, except at night. The surgeons told us that he really needs his sleep so that we should not keep him up by changing him all night, but if we don't change him he leaks all over. He wears diapers to bed and we have pads that he sleeps on and everything, I just want to know that there is a light at the end of the tunnel. Has anyone had a child with this surgery that can give me a little insight. He is now in first grade and I worry about slumber parties and fun things like that. How long did it take you or your child to be able to control at night, and if anyone has any suggestions we would really appreciate them. We try and get him to eat early, but he still goes all night it seems like. Thank you!!!

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How is your son doing now? I am adopting a baby who had to have a total colectomy before he was even 2 months old due to drug use before he was born. I worry all the time about how his life is going to be and looking for other moms who are going through this.

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Hey lilbitsmama!
My son is 5 years old and had a colectomy 2 months ago. I have tried so hard to find people who have a child without a colon. It has been very difficult to find anyone with his exact situation. He does still have his rectum which is, i think, why I have had a hard time finding anyone similar. I find more information on the J-pouch than children with their rectum. My son had about half of his colon removed at 3 weeks old, then had a colostomy for 6 weeks, and then reversed. 4 months ago, he had an obstruction (where his colon actually kaleidoscope, twisted, and kinked) cause the remove of the rest of his colon. I would love to hear more about your son's situation. :)
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