Hirschsprung Disease/ Colostomy

Hi Aiden's Mom,
I am so sorry that you have to go through this. I'm guessing you are probably an emotional reck right now! I'm not familiar with Hirschsprungs disease but my son did have a colostomy bag for the first 5 months of his life. He was born with an imperforated anus. Basically, his rectal canal was connected to his bladder. The colostomy bag was a bit of a challenge in the beginning until we got the hang of it. We found a nurse with a lot of experience with colostomy bags whom was nice enough to meet with us, show us a few tricks, and give us supplies that we didn't get from the hospital. My advice would be to make sure you are fully trained on how to care for a colostomy bag before leaving the hospital and ask for the name and number of resources in case you need help. Also, my son was breastfed the first 3 months and then we switched to formula. Poop from breastmilk does not smell nearly as much as poop from formula. When we switched to formula we were changing the bag at least once a day because of the smell.
I'm sure everything will be okay, just be sure to take good care of yourself too!

I had a baby born sick last year, who is doing good finally and I was born very sick. . . So I'm extending the I'm sorry. Considering I have a disease 1 in 10,000 at best have and I have a heck of a time finding anyone to talk to about it I hope you do though!

I wish you good luck!

my nephew had this, and they caught it while he was still in the hospital. He had a quick surgery and is now doing fine. They have check his bottom every month or so, and he had super bad diaper rash for a few months (that might have been because his parents are dopes and not because of the Hirschsprungs, though, these kids didnt even want to have a biopsy done, they just wanted to take their baby home!) He didnt have to have a colostomy bag, though, that I know of. I know he was really out of it after the surgery for a couple of days while he healed up, but now he's doing great. I know they say there's a possibility of him having to take laxatives later on when his poop becomes solid, but we dont know yet.

I have no help for your question but I wanted you to know that you and your family will be in my thoughts and prayers. I can't imagine going through what you are especially with another little one at home. Be strong and lean on your husband when needed!

I am so sorry you are having to go through this, her too. My MIL was an ostimate and was very active in the Ostomy Association. I hope you find someone as good as she was to help you through the trials of finding the right appliance that works for you and your child. That seems to be the biggest obstacle in making it work.

Is this a chronic illness? or will it eventually catch up to her development and heal?