My son is 8 and is in need of any person willing to have a conversation about life with an ileostomy; he has had his since he was 5. A colostomy was not successful as he has no nerves in the large intestine, but it's not Hirschsprung's disease. He just needs to know that others are out there with the same condition as him!
dragon
Sep 12, 2012 5:14 am
butterfly48
Sep 14, 2012 1:13 am
I am so sorry this happened, I have had an ileo for one and a half years. I don't like it. It's no fun, but when I think of others out there who have a disability, I think to myself, "Mine isn't so bad." But at his age, that is hard. I would try taking him to a doctor or a children's group where he can maybe make friends with another child who has this situation. Most people are happy they have this procedure because they were in so much pain, and this gives you a second chance to live life. So good luck, and you're young, and one day they may have a procedure that will reverse it, regardless of it being an ileo. They have one now called a Koch pouch, but I have too much scar tissue, so they say, but I am still looking at doctors every day to put me back. Take care, butterfly48
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Zebbie
Sep 14, 2012 4:31 am
In Canada, we have a great camp for children called OSTOMY YOUTH CAMP. From what I have read and the photos I have seen, it looks like a great place for kids to meet other kids who have ostomies. The camp teaches self-esteem and coping, Enterostomal (ET) nurses, counseling on physical and psychosocial needs, and so much more. On the fun side, there is everything a kid's camp has: fun, fun, fun. Maybe there is an Ostomy foundation in New Zealand that you can call or look up on the internet to see if there is an Ostomy Youth Camp. Good luck and best wishes to your son and family, Zebbie.
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dschnarr
Sep 16, 2012 8:21 am
Hello Zebbie. I would be interested in helping out with this youth camp. Do you have contact information and the time of the camp? Donald
Zebbie
Sep 16, 2012 3:00 pm
Sorry Donald, I don't. The information about the ostomy youth camp was in the Ostomy Canada magazine. You can go to UOA Canada on the internet; you might find the information you are looking for. If you find the info on how to volunteer, please let me know. I would love to do that myself.
Deborah
Staying Hydrated with an Ostomy with LeeAnne Hayden | Hollister
