Well I really don't know where to begin. Let's see...I am nine years old and my name is Devin. I love a lot about my life and I love to watch football on TV. What I do not love is this. I have this problem called Hirschsprung Disease. I have had several surgeries, or operations. In fact, believe it or not, I lost count. Guess you could call me a 'pro', though I wish that I weren't. I've even have had several inches of my intestines taken out...inches that sure weren't helping me very much.
So here's what happened. I had 4 colostomies and 4 pull-through operations. These are different ways of arranging the intestines to allow them to rest and get better. I have been teased a lot because I have several BIG scars on my tummy. Lots of kids have said "boy that is really ugly on your tummy"........at first I cried a lot but them my parents just told me to look them in the eye and tell them that I am a very special little boy. That helped.
of all my problems, I haven't grown like other kids my age. And my bottom
gets very sore because I don't have much control with my bowel movements.
If you think that is gross, imagine what it feels like to me. It's tough,
but I can still have fun and still do pretty much everything that you can
The one thing I don't like about myself is that my tummy hurts a lot! I keep trying different medicines to make it feel better. And I go to the Doctor a lot, even though it's a very long ride from where I live in Iowa. I go to a very small school, and even though I have to miss a lot of days because I'm sick a lot, I still really like it. One time I missed over a month of school at one time.......it was scary because all the kids looked at me like I was different.....but I was the same person. I have to go to the nurse everyday to take meds and the kids alway ask why I have to leave and what I do at the nurses station.......It is scary and hard because I never know what I'm going to be teased about next. One time at school, I had a bad tummy ache and when it was time for recess, I had a friend who just walked around and sat with me because I just didn't feel good enough to play. That was nice!
Lately I've been having a hard time getting my system to work right. The doctor had an interesting idea, though, and so far it seems to be working. Have you ever heard of your appendix? It's inside your body, near your intestines, and people still aren't real sure what it's good for. I can sure tell you what mine is good for! I recently had an operation to bring a piece of my appendix to the outside of my belly. The opening, or stoma as it's called, is about the size of a dime, and I'm able to keep my intestines working properly (or nearly properly) by squirting a lot of water through the stoma each day. I know that this must sound very strange, but it works for me, and makes me have a much easier time in school.
have one brother who's four-years-old. He also has Hirschsprungs
and he feels a lot like me. Except that he has to wear diapers because
he can't feel when he has to have a bowel movement. He's been having a
rough time lately, though you'd never know it from this silly picture!
mom and dad are thankful for having two little boys and are grateful for
the happy and healthy days we do get to spend together.
Well this is my story and I love this site because it makes me and my brother, and my mom and my dad not feel so alone with our medical problems. I hope that you're glad you came to visit and learn about my life.
P.S. Now this is the greatest. I made a good friend who has the same type of medical problems that I do...all because he wrote to me when he read my page on Band-Aides! Here's a picture of the two of us together.