Anyone with Hirschsprung disease??

My Husband  was diagnosed at 18 days old and as a result was given a colostomy.  Ive had 3 operations so far to try to correct the colostomy but with no good results. anyone care to share there ordeal with me?

[lkaukett]

The Pull-Thru Network has a great list-serve for families of kids, and adults, who were born with either HD or imperforate anus - or have some other kind of dysfunction.  There will be special programs at their St Louis national conference this summer.  Check them out at www.pullthrunetwork.org

[mauleymo]

My son was diagnosed at 5 weeks old and is now 25yrs old. He had a pull-thru done when he was 8 months old and is doing fine.
I agree with Ilaukett, check with Pull-Thru Network.

[momx4401]

My son was diagnosed the second day of life.  He is now 10 years old.  At just under five months of age they did a pull-thru, which was a miracle in it's own, as they expected not to have so much of his bowel to be removed.  They removed exactly 50%-yes that is half of his large intestine, successfully and with the help of God I am sure, without a colostomy bag.  All the doctor's and even the surgeon that had successfully done this was astounded it could be done with so much to be removed.  10 years later.... and finally, all seems to be good.  His stools are still more liquidy and he does have very loud and smelly gas, but that just seems to be minor in comparision to what he was put through the first 7 years of his life.  I would definitley find a skilled surgeon (like we thankfully found) and talk to him about it.  It was (at least for my son), a VERY long recovery and lot's of other minor surgeries later.  But you being an adult and being able to communicate and follow instructions of going to the bathroom, might not have such a difficult time.  How much of your intestine is affected if you don't mind me asking?