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I don't have any experience with your son's medical issues, but maybe my daughter's experience and the experience of other children like her might help you a little. She has spina bifida and since she is, fortunately, very healthy the major issues we have to deal with on a daily basis are bladder and bowel control. The goals are to keep her from having little or no urinary track damage over her lifetime and to help her to achieve social continence. The urinary continence is fairly easy because she is catheterized.

As for pooping issues, first I should say my daughter is 2 so there's no issues with her still being in diapers. She tends towards constipation rather than constant pooping, but because she seems to try to go during the day she often has a slightly dirty diaper whenever we cath her. We currently give her a little Dulcolax suppository every day to make sure she goes every day to keep her system moving. As she gets older we will need to adjust that on an ongoing basis. Most spina bifida kids have a fairly rigorous bowel movement routine to maintain social continence. The idea is to make sure the system is completely cleaned out once or twice a day so that no accidents occur when they are out of the house. Many do an enema each morning to completely clean out there system. Others are able to do well with a laxative each morning and evening. It seems to be largely successful for them, but the routine varies from child to child.

It sounds like your son has had enough major problems with his intestines that he may not be able to have complete control of his bowels. If the doctors aren't able to provide any ideas for correcting the problem and good bowel management program may be a good step for you to take. Good luck with it though. I know that have poop issues is difficult to deal with. It's not exactly something easy to bring up in polite conversation with other moms.
 
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