I am 55 years old and have had no motility in the last part of my colon since I was 17 yrs old. I always thought I was constipated but really the rest of my colon works, the feces just stops at a point and builds up. This has been a profound and devastating thing to have. There are sometimes that enemas don’t work, as my colon swells, or twists and/or telescopes which makes passing even water difficult. I have been to many doctors and specialists and I have never heard any specialist mention HD. I just ran across it on the internet. I have managed with enemas, since laxatives, fiber, and other means don’t work. I would like to hear from other adults with Hirshsprungs. I have been so alone with this affliction. I didn’t know anyone else had it. I spent so much time and energy hiding what I have.
The only reason my mum survived is that she had enemas every day for the first 5 yrs of her life because of undiagnosed HD. She is now 64 and has to take stuff to keep her bowels working. She had her first surgery after her 4th child was born at 29. During her pregnancy she didn’t have a motion for 3mths. An amazing woman!
I am 45 and had my surgery for SSHD at 2 1/2. I have had 2 boys both affected and a daughter perfectly healthy. We have 9 family members altogether who have been diagnosed with HD. 4 generations. We all live in Australia.