I just found this forum and I'm excited to connect with others who have or have children with Crohn's. I'll start with my daughter's very long health history. She is 16 yrs. old. She was born with Down syndrome. Healthy for about the first 5 years. Then she suffered a stroke and was diagnosed with a very rare neurovascular disease called Moyamoya. She suffered several more strokes and had 2 neurovascular surgeries at Boston Children's Hospital. She has not recovered completely from the strokes and has some lasting disabilities. She was pretty healthy though except for the physical limitations. About 3 years ago she was diagnosed with Celiac disease, then Crohn's disease which she takes Asacol for. Then she was diagnosed with an intestinal motility problem. After trying all kinds of medications she had a cecostomy surgery in 12/12. We do a flush with golytely every day now. She was then diagnosed with hydronephrosis because of her neurogenic bladder from the strokes. To help keep her kidneys clear she had an appendicovesicostomy surgery in 7/13. Durring some scans they also found ovarian cysts. She was just recently diagnosed with Hashimotos. Finally over the past couple months she has had a lot of uncomfortable stomach bloating, forcefull burps, and butt pain. Her GI Dr. put her on an antibiotic(for intestinal bacterial growth) and it seemed a bit better but then started to come back. He put her on a longer course of the antibiotic so I hope this helps. I find it very difficult to know what is bothering her or flaring up with so many things going on. As I said I'm really glad to find this group.
Mary Grace
Mary Grace
