I am 34 years old and was born with HD. I had very little to NO control
over my bowels until I hit my late teens/early twenties. And even now if my
BM is the consistency of toothpaste, or even looser, I have the potential to
have problems, unless I am in the bathroom every hour or so.
My mom teaches 3rd grade. While I was in elementary school, I went to the
same school as her. All the other teachers knew of my “condition”, so I was
allowed to use the teacher’s lounge bathroom. We also put several pairs of
underwear and pants for me in there. The thing is, whenever I was in class,
the teacher would walk up to me about once every hour and whisper in my ear,
“are you having any problems today?” Which was embarassing. So usually I
just sat there, even if I knew an accident was coming, or had already had an
accident. By the 3rd or 4th grade, the kids all knew something was up with
me. I got teased on an hourly basis. “poopy pants”, “stinky”, etc.
I never told my mom about the abuse from the other kids. She always just
assumed that the system we had going work perfectly. I finally told her how
bad everything was when I was around 25 years old. She was really upset
with herself and wished that she had done more. But I told her that it was
not her fault. She feels guilty because my life was wrecked by the time I
was 25. I was an alcoholic and heroin addict, and suicidal. And it all
stemmed from my childhood.
I would never blame my mom. She did what she thought was best, and I never
told her what was or wasn’t working. I had so much shame built up inside
me, that I would never bring up HD with my mom. In hindsight, I see many
things that I could of done, and my mom could have done
I could go on for much much longer, but I don’t want to bog down the message
forum. If anyone has kids in elementary school or even middle school who
are having bowel control issues, and want to email me to try to understand
how it could be dealt with better (emotionally, etc), please DO NOT HESITATE
to email me.
Also, if there are any ADULTS (older than 25 or so) out there, who have HD
and had “accidents” during their schooling years (from what I understand the
soiling problem is not common with everyone with HD), please please please
email me. I have never talked to/emailed anyone that has HD (and the same
symptoms as myself) and is an adult now. I have dealt with the
alcohol/chemical dependency issues, as well as the depression issues. While
I was getting sober, I went to a lot of AA/NA meetings. I don’t want to
argue with anyone over the merits of AA/NA. The one main thing about AA
meetings which were very helpful to me, was being able to talk to other
people that have been there and gotten clean and sober. I have never been
able to find this with my Hirschprung’s. For the past 10 years I have
searched the internet looking for adult support groups. It is strange how
difficult this is.
I have been on this mailing list for a while, but have been quiet. Reading
the many posts from parents that have babies with HD, has really shined a
light on what my parents muct have gone through when I was born. This isn’t
like other diseases, where there are huge support groups and lots of
information everywhere. And with the problems I mentioned above, it’s not
something you want to run around telling the world. Soiling problems are
embarassing. In fact I never told a friend or girlfriend about it until I
was around 28.
Sorry for the long rambling email, that probably makes little sense. I came
close to deleting this email and waiting until I could write one that made
more sense and didn’t jump around so much. But I knew deep down that I
would either never write the email again, or it would take me a very long
time. If anyone wants to reply privately to me, please email my work email
). (I don’t check this email except once every 3-4 days)
Thank you for being here on the internet.
I almost forgot. What is that Bowel Management thing that I have seen
mentioned on here? Surely they didn’t have this in the 1970’s-1980’s when
it would have helped me. But if this is something that helps children with
HD control their bowels, then that is amazing!