I've read your posts often since my small child was diagnosed with UC a year and 3 months ago. We have been exploring all options and she "failed" first line ASA drugs (they failed her) so we have an extremely difficult decision to make. She's been on two courses of pred and is probably going to have to go on a third one. In the mean time, we are VERY concerned about
immunomodulators in a child so small (her immune system is not even properly developed yet according to her GI). We are very seriously considering surgery. In a small child the chances that it might be CD are higher than in an older child and regardless we would want to spare her many traumatic surgeries so would want to go for a temporary ileostomy and have her chose whether she wanted it reversed or not when she is older. We pray that this would allow her to get on with being an active child (which she was before this cursed disease came into our life). But, of course surgery is such a major step and we would be going against the advice of a few GIs to try further medical treatments.
My husband and I are trying to have the GIs refer us to a few surgeons for consults but in the mean time we are trying to find out what the worse case complications with an ostomy are and what life would most likely be like for her with one (as this is pretty elective at this stage, it puts a LOT of pressure on us).
I would really appreciate it if you could share the worst complications you have experienced or even know of. I know of the possibility of things moving through too fast is one and the resulting dehydration and possible malnutrition. Has anyone had this problem, and if so, how was/is it treated?
Also, blockages, adhesions, skin problems - anything else?
I've posted before about
waking up at night to empty and it seemed many did this, but do you have to stop eating at an early hour to prevent a blow out? (We are Indian and Italian and eat pretty late).
Also, how many of you have dietary restrictions?
Thanks so much for your help.
Post Edited (killcolitis) : 10/11/2010 10:38:51 AM (GMT-6)