Adult with HD

Hirschsprung's Disease
#1

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!

#2

I am a 36 yr old female, who was diagnosed with Long Segment HD, within the first couple weeks of my life. I have personally continious problems that are related to my HD. One of the most important things that I can tell you about this disease for me is that I wear a depend at nighttime before I go to sleep and I have a maxipad in my underwear during the day just in case of an accident. I have to base my life around my HD, which I hate but I am used to it. I am so lucky that my best friend of over 12 years has a younger brother with the same disease, it is just not as rare as what I have. If it wasn't for him sometimes I don't know what I would do. Because he was around it when he was younger he is very understanding of it and has never judged me before.

Please email me @ elapworth2003@yahoo.com, sometime so we can chat.

Congratulations to you from the bottom of my heart!

#3

Hi Jon,

I wanted to respond to your message because I did go through a similar, though not as severe experience.

I am 32 years old and was born with HD. I was misdiagnosed for the first 12 years of my life. I was told I was constipated, and treated with years of regular enemas and laxatives. I was always tired and experiencing abdominal pain, gas and discomfort. My condition was different and easier to hide than yours - I primarily experienced constipation symptoms and pretty much only lost control of my bowels at night while I was sleeping (though I did experience that symptom).

I was finally diagnosed when I became severely ill at the age of twelve. What followed was diagnosis and 5 surgeries over 1 1/2 years. I can tell you that, after all that, the pull-through surgery cured me. I have had regular bowel movements ever since then.

But things did not end there, and I can understand your pain. As a child, I was deeply ashamed of my condition, and hid it from everyone outside of my family. I developed a self-identity as broken, unacceptable, and different from everyone around me. I always thought the problem was my fault and if I only could try hard enough it could be fixed. The regular enemas that my parents had to give me were also an extremely traumatic, painful, and violating experience that I am still dealing with. I have experienced anxiety symptoms all of my life, and after another illness (physically unrelated) at 21, I developed post-traumatic stress disorder.

While I am lucky to have not had to deal with issues of addiction, it makes sense that they happened. I became an unhappy, withdrawn, fearful adolescent. Because I was dealing with my condition, I missed a lot of the usual developmental milestones that people take for granted. I have problems with relationships, and have trouble trusting people enough to let them be close to me. I still often think that I am broken. I’ve been in therapy for pretty much all of the past ten years. I feel the same about my parents, they did the best they could and they were also victims of the incompetent doctors who handled my care.

Jon - I don’t know if we’ll be able to continue this conversation, I can’t guarantee whether either of us will be able to respond again (I may try emailing you - trust issues :-). But please know there’s someone out there who understands your experience. I will do the same.

To any parents who are reading this - if your child was diagnosed after infancy, please make sure they have the psychological support that they need. An intestinal disorder is an extremely difficult thing to have as a child, and medical illness has developmental implications. Please let them know that they are a wondeful, beautiful, healthy person, no matter what’s happening with their intestine. Find ways to help them not consider their bowels as a shameful secret, or as the center of their life. And make sure they are able to see a competent therapist if they need it. I kept this experience wrapped up inside me for too many years.

It would be good for there to be an adult survivors thread here or somewhere else. I will be researching this as well.

Keep up the good fight,

grn_up

#4

I just read your conversation and wanted to say what a super wonderful person you are to have shared that with everyone. Although it must have been difficult and totally out of your control, please realize you are super special!!

Thanks again its so not easy seeing people suffer with this stuff.

Best wishes.

#5

Thanks - finding places like this where you can share your experience makes you feel better.

GU

#6

Grn_up,

Sorry for the long long delay in posting a reply. I haven’t been checking
my gmail account much lately, and work has had me really busy.

I would definitely like to continue an email conversation off-line. (trust
issue as well). Please email me at jon.wetzel@fmr.com. I check that one
all the time.

I am going to try to create some sort of forum for adults living with HD.
It would mean a lot to all of us to have other people that understand on
some level what we have gone through, and continue to go through on a daily
basis.

I will hopefully post details soon…

Jon

#7

Jon and Grn-up-

You are amazingly courageous people! You must know that in your “posting” your experiences you have already, in itself, helped so many people. Thank you :slight_smile:

I have an infant w/TCHD and it’s just a blessing to hear your comments on this forum to give parents the insight to the realities of HD. B/C of your posts, you’ve truely enlightened me. I will be very mindful of the psychological support Joshua may need in growing up w/this disease. You two will be in my prayers.

Jon, I encourage you to go through w/the adult HD forum. May God bless any endevour (sp?) you undertake for the sake of helping others out. You go boy! Love, Ms. Geremy

#8

I was born with HD and diagonsed by three months. They removed five feet of my intestines, but I was lucky enough not to get a collostimy. Currently I’m 23 years old, and female. Let me tell you it’s been the most difficult thing to deal with in my entire life. I have control issues, weight issues, and depression. It doesn’t help when a girl tries to have a serious relationship either, because anytime I get intimate with someone I have to make sure they will be understanding. Luckily I have found a wonderful man who is very understanding and loving.

I grew up having sever pain from being constipated all the time. The only way to soothe my stomach pain was to drink a mineral oil and orange juice cocktail, which I didn’t mind, it just didn’t make the constipation go away. I went home from school constantly because my stomach hurt so much. I played with all the other kids, but even a slight smack to the stomach would send me cripiling over in pain. I took laxitaves on a regular bases, and felt violated with the amount of doctors sticking the fingers up my butt.

When I was fifteen and a sophmore in high school they figured out that I was so constipated because the scar tissue from my original surgery was too small (like a 3mo old). So they went back in to remove the scar tissue. Unfortuantely I got an infection that lead to many surgery’s after that. I was out of school for around five months. My family while trying to be supportive just didn’t understand how hard it was to move. The infection had gone into my butt cheeks, so they had to make insicions for the fluid to drain. It was nearly impossible for me to move, everything hurt.

That didn’t quite work the way they planned so I had a collostimy for six weeks, and because it was temporary I couldn’t be given an enema. Lucky me! It was terrible, uncontrollable loud gas and not even realizing I was going to the bathroom at any given moment. I had a tutor because I wasn’t in school, and I didn’t even want them to come because I was so afraid of them hearing. Finally I got put back together the way I was supposed to be, and it was wonderful.

Until of coarse that I realized I no longer was constipated all the time, now it was uncontrollable. It seemed like no matter how much fiber I took it didn’t help. I was going through the large containers of metamusil between one in two weeks. I tried all different kinds of things, but by this time I was working, and it was starting to interfier. I wear the over night women’s pads just in case I leak. Once a month I have to take laxitives because it builds up on my side walls and makes it worse. Because of all the scar tissue on my rear, I can’t even feel anything down there. I don’t even know when I fart.

Pinching one off as they say is impossible. I have to wiggle it free, LOL. My poop is the size of earth worms, and because I wear a pad all the time I get other problems. And after all that I live a very normal life, and have been able to keep it under rap for the most part. If anyone ever needs any inspirational advise or has questions about how to handle situations with their kids, please feel free to email me! I’ve been through the ringer with HD, and I feel that dispite it all I’m a pretty rounded individual. My email is ecamills@aol.com

Thank you to all who have been posting, I really enjoy reading your bouts with HD, it helps to know there are others. And more importantly there are others who we can share with!

#9

As I read all about ecamills story I can see all of my daughters problems she has the severe constipation, bloating, severe stomach pain, she has to use enemas just to go, and she was even kicked out of school because she missed so many days.the problem we have is that we cant find a doctor to treat her in texas because she cant do the anal rectal physiology test due to her OCD issue with going to the bathroom with anyone in the room, it is so bad she has anxiety attacks when the doctors tell her she has to do it or they wont treat her because she needs to act like an adult and do what they tell her for them to get a definite diagnosis. But she says she will just have to die because that test is out of the question , and that all the counselling in the world eill not change her mind so if you know of a doctor in texas that will treat her without the ARP test please e-mail me at jackieburdette@gmail.com We are veery desperate. Please help us.

#10

I don’t live in Texas, but you should get a new doctor. There are tests that they can do for Hirschsprungs that she can be put under for, so her OCD won’t affect anything. In fact when they are older they put them under to do a rectal biopsy that will diagnose HD. I know there are people on this board in Texas. Hopefully one of them can refer you to someone with more compassion.

Good luck!

#11

I don’t know what compelled me to stay up tonight and seek this forum out other than I went to a concert in the park tonight to meet some friends I hadn’t seen in 6 mos., with my children and wife and we were going to have a picnic. I made a picnic dinner, alway knowing int he back of my head that, like campling, I hate picnics because the bathroom facilities at large gathering are often not as desireable as the toilet at home. Hoping that the evening would be short enough that maybe I wouldn’t need the toilet immediately after eating, along with the 500 or so other people attending the event and it occurred to me that this is not a normal person’s concern. I’m a 42 yr. old male, born with HD, a colostomy was performed at 9 days and a pull through at 9 and 12 mos. While it took me 25 years to learn how my system works, I still always have the risk of an episode that can spiral out of control in a weekend if left unchecked. So many of the things that each of these posts speak of, I lived through, mostly with little or no help from doctors. Over a lifetime I’ve developed a very functional bowel and a healthy lifestyle. I’ve also never met another person, my age or otherwise, who lived through this disease. Is there another thread out there where this conversation continues? Once the intros are given, we all could have a lot of help to share from out mutual experiences. Best, John

#12

Hi. I am 42 years old with still that extended belly. Born in 1977 with HD and no nerve cells- have had 10 surgeries in my life. It’s hard to have any control with this disease. I am now on one powder I take every other day (Maralax)- I am healthy but still struggle. What are some foods that you eat to stay healthy? I have low blood sugar and allergic to nuts- so it’s a struggle for me. Any active would help.

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