Please take a moment to introduce yourself to the community. Everyone here has something to share about Hirschsprung’s Disease. For the discussion boards, we ask that you keep your full name and location private.
I was born with Hirschsprung’s Disease and a Toxic Mega Colon. My colon
wasn’t attached to my rectum. As a result, ALL the fecal matter was
being released into my bloodstream. Had my wonderful, life-saving doctor
NOT caught it on Day Two, I would have died from sepsis poisoning.
I had 20 surgeries, two colostomies and last rites 4 times. I was a
miracle baby. I was also the first one in my family with this condition.
(Or so they thought, at the time.)
My life has been very, very hard because of living with this disease. It
has made (and still does, sometimes) me feel ostracized, shamed, dirty,
and thoroughly embarrassed about my condition.
I still experience issues on a daily basis, although from a Dr.'s
standpoint, everything should be “just fine by now”.
Well, it’s NOT
.And, I’m wiped out from trying to figure out my OWN answer, my OWN
diagnosis.
It’s very frustrating.
But, I love me, I lived for a reason,I’m here for a reason and I’m going to get this sorted out one day.
Oh - If anyone experiences teasing or bullying from kids, here’s my
suggestion: “If I didn’t have these scars (colostomy, etc.), then I
wouldn’t be here today.” I proudly show off my scars during the summer.
Once, a nurse accosted me when attempting to draw blood by saying,
"Eckk. Look at these arms! How long have you been shooting up?"
WHAT??? I was appalled. I replied, "I don’t do drugs. Those are from
cut downs that I had done when I was a baby; there are three more - one
on the other arm and two on each ankle. How DARE YOU ask ME that
question?! You’re a “nurse”? Pffft. I replied, “I think you need to go
back some more schooling because there’s a lot more you need to be
taught. Especially how to talk to your patients.” Suffice to say, she
didn’t ask another thing from me that day.
STAND UP FOR YOURSELF & NEVER ALLOW ANYONE TO MAKE YOU FEEL LIKE
YOU’RE A MARGINAL PERSON OR A FREAK! Rather, enlighten them that it’s
just the disease, NOT the person! =)
Information is key. KNOW YOUR RIGHTS!
Be well,
RL <3
My grandson has Short Segment HD
My child has HD.I want to connect w/ parents who can share experiences.
I am Jean in TN, grandmom to Andrew, 2 years old, SSHD.
I am a married mum of 6, 2 with HD 7yr boy, 6 yr girl
i have joined hoping to find other parents with the same complications due to HD and ways of managing and coping on a day to day basis
My son is almost 13 months old and has short segment HD. He had his pull thru surgery when he was 9 days old and has done very well since. No meds and no hospitilizations to date, we have been very fortunate. We also have a 3 yr. old daughter with no health issues and another baby on the
way.
My son, David is 3 years old and has HD. He was diagnosed at 2 days old and had pull-thru surgery at 2 weeks old. I want to connect with others who are coping with the disease and its various related issues.
My name is Crystal and I am the mom to Ian (15months). He has TCHD. He has had an ileostomy for the past 14 months. We had a duhamel pull thru on 4/3/07. He is recoevering slowly but is pooping non-stop. I am here to offer support to others. Also, to learn everything I can to give my little man the best in life despite HD.
Mom of 2 boys 22 month old who has Waardenberg syndrome w/ intestinal problems (hopefully getting diagnosed soon) and a 9 month old who is healthy.
I am a stay @ home mom who use to work in the construction field as a carpenter. We now have started our own construction company in north idaho.
Hope to learn how to deal w/ my son who is on miralax everyday to help potty. He also occasionaly needs suppositories, and 2nd doses of meds, and other lax to clean him out. He has been like this since I started to wean him to formula @ 4 1/2 months old.
Mother of Pepper - born 11/03 with sshd (pull-through at 3mo)
Hello my 16mth old son has total colonic HD, so looking for any advice, infomation from others and to share if i can help ianyone in any way we are in the UK
Hi I am a 45 year old mum in Australia to three boys and grandmother to two boys. My number two son who has just turned 13 has Hirschsprungs Disease and has an Illeostomy . I come from a family history of Hirschsprung Disease in total that I know of there is approx 14 with this disease in minimal to severe Hirschsprungs. My son Nathanual will have the rest of his large bowel removed this year because the doctors say that it is dying and also to help with mucus discharge . If you want to know more just ask .
I’m am the step-mother of a 7 1/2 y.o. little girl with Hirschsprung’s Disease. She is very embarrassed by her condition and has the opinion that she is the only child in the world with it. I’m just looking for other families with the same problem.
I am writing from Istanbul.
My son is 11years old and has SSHD. He had colostomy at 2.day after birth, Biopsy report did not give any abnormal result and second time operated at 2. month for closing.
At 5 years old, he had a congestion and biopsy repeted and reported as SSHD (around 8 cm last part) but no further operation such as pull thr. etc carried out, left as is.
God thanks, with some care on foods (more vegetables and olive oil ) he is going well.
On this respect I want to share information and experience with other parents or adults having this problem.
Interested in learning more about HD. My son has HD
33 year old with TCHD and ileostomy. Married with one son.
Hello, my name is Danielle and I am here because I have a son with HD and I did when I did when I was a baby. I was always told that HD isn’t very common and the past 10 months I think that I have seen more and more about it. It gives me great closure to know that there are ppl out there that want to get to know more about it and the ppl affected with it in there lives. For a long time I felt guilt for my son having HD because I had it when I was a child, but having these groups and sights, it really helps.
I am a mother of two children, 2 1/2 and 8 mos (DS and HD).
dad of a 12 1/2 year old daughter of hirshsprung’s