Thank you for the replies!
Michael was born with it, he needed a little baby enema to leave the nursery when he was born. He suffered until he was 8 months old. He needed emergency surgery to save his life. It was many years ago, I was young (a teen mom) and the whole ordeal had me a complete mess. But from what I can remember he never could really have normal BM, we gave him everything. They really just did not know what was wrong with him. They even once thought that he might have a tumor because they found a lump in his belly, the ultrasound showed that it was just rock hard poo stuck in his intestines. His pedi had suspected HD and he had a barium enema x-ray, but for some reason the test came back negative. He was 5 months old then. I felt like I was such a bad mom, I mean I was a teen mom and no one had any answers for me, so I figured that it just must be me and I was not doing what was needed to care for my son. That poor child I still remember how much pain he was in.
One day he was just so different, he tired to BM and vomit at the same time and nothing was moving, his body would strain, but nothing happened. We took him to the hospital and then we were taken out of town via EMS to a bigger hospital. He had emergency exploratory surgery at 8 months old to save him. I believe his intestines finally ruptured. He had a colostomy, however since this was not a planned surgery and he did not even yet have the DX of HD the doctor did not up far enough in the intestines. Michael still had lots of problems, bloating, gas, pain. He had to have two more surgeries to move his stoma /colostomy. When he was 4 yrs old he had his 4th and final surgery and his colostomy was reversed.
I fear that since the doctor (very experienced w/ HD ) was unable to find the unaffected part of intestine means that he made the colostomy at the “average†area of viable intestine and unfortunately Michael had more undeveloped intestine that the average HD child.
Michael was not too bad to potty train, he was 4 yrs old when he have the colostomy removed, so when he had his 1st BM in the PICU he woke me up saying… I HAVE TO GO … I HAVE TO GO!!! I ran and got the toilet chair and he went on the potty!!! Since he was older he was cognitively able to understand toilet training even though he had never experienced that “feeling back thereâ€Â, wiping properly was a whole different issue!
He has not had a problem since and it’s been years since he has had any kind of testing or follow ups. Now he does have smellier gas than normal people and when he eats junk food it goes right though him, but over all I would not say that it’s a problem. I tell him that when he gets serious about girls he is going to have to cut out all the pizza, girls don’t want to kiss a farting boy!
