> Hirschsprung Disease > Stories

Born with TCHD

I was diagnosed with HD at a day and half old. I had a colostomy bag for a year and half and then had the pull thru done. I was diagnosed with TCHD (Total Colon Hirschsprungs Disease).

I had my ups and downs throughout the years with multiple surgeries. The last couple of years I have been having a lot of problems and at the age of 33 the decision was made to have an ieliostomy bag put on. It was not something I wanted to do, but to try and help lower the pain and other batheroom issues it was the only solution. So far I am still having chronic pain at high levels from scar tissue and adhesions, but it has helped with having accidents. 

Having the ieliostomy bag it has been stressful and fiscally draining for me.

World map of Hirschsprung Disease


Find people with Hirschsprung Disease through the map. Connect with them and share experiences. Join the Hirschsprung Disease community.