I was diagnosed with LSHD at about a week old. I'm thankful for my surgical team.... I had my last surgery at 9 yrs old. I'm 30 yrs old and have birth 3 children.... Two healthy boys and a daughter (my youngest, that's currently being tested for HD)
My son has this disease and is part of a research study. I worry about him very much. If he didn't have the bag , you wouldn't think there was anything wrong with him. He looks fine and does everything like a normal baby. He is 10 months. On may 16th he goes in to see if he can have his surgery. June or July he will have it done
Did he have long segment? Is that why the bag and is it a ileostomy or colostomy? Hopimg its reversed by now and wats the results? As my daughter has the same
I was born with GI dysfunction, but nothing at all like this. But even with minor issues, it threatened to interfere with my school. They didn't want me there if I puked that day... I puked pretty much every day. My mom finally convinced the school that if I puked once, then was instantly up and running around, that I could stay at school. If something so minor threatened to disrupt my early school years, I can't even imagine what it's like for kids with issues that severe. I'm glad that happy little boy was able to get the surgeries he needed to provide him with a great quality of life. I hope all kids like him are equally fortunate.
I have the disease, i’m very fortunate with it though, i play, eat, go to school, swing, slide, everything, i live well, my parents don’t really care but i never ever had this... i had green puke though, i knew it, i know how it feels, its so BAD! I hate it, it always ruins events like my birthday.. :/
