Any people aged 18+ with HD?

I am 21 and was born with Hirschsprungs, I am finding it really difficult the older I get to deal with the effects of the condition. I had numerous operations when I was younger, and have been left with constant diarrhea and stomach pains.

I am finding it increasingly difficult to hide the condition and I find it extremely embarrassing.

I was just wondering if anyone of a similar age (or even older) had any advice or was just available to chat about it?

My son is 12 going on 13 and is also still having problems - I’ll be watching this thread.

My daughter is 11. She had Total Colonic Hirschsprung’s, all of her large and about 17" of her small were removed at 1 year of age by a wonder surgeon, Dr. Langer in Toronto’s Hospital for Sick Kids.

He is one of the best with HD. Also, University of cincinnati has an expertise in the area and are doing a lot of research. I have not spoken to them in years, but they are well versed and have suggestions.

As for my daughter, she is very active and doing well. She is quite the little super star tom-boy athlete. She will never have a firm bowel movement, but has adapted well.

She does have accidents some nights, but we have taught her how to deal with them whether at home or at a friend’s house. She does crash quickly when she has a cold or stomach bug. This is because she dehydrates so easily.

Let me know if I can assist. I feel very blessed with how well my daughter is doing.

Brian your daughter sounds like she has similar conditions as I had!

I live in the UK so research is quite limited on Hirschprungs, and the two surgeons who saved me and I trusted have both retired, I’m currently waiting to visit a new specialist but I’m not hoping for miracles if I’m honest!

Is your daughter having b12 supplements or injections? I am the same I fall very quickly if I get ill, especially if I am a few weeks late with my b12 injection!

I’m glad to hear she is coping well, I respect her for adapting well!