Hi everyone! My baby is 4 months old and has an ileostomy due to HD long segment. His entire large intestine is affected. Our doctor wants to do a pull through when he’s around 2 years old. I actually think I’d like to leave the ileostomy because I haven’t read many good outcomes from the pull through operations.
If your child has had a pull through I’d love your thoughts.
Thanks so much!
My son was diagnosed with SS HD at 4 days old and had his pull-through at 10 days old. He’s now just over 10 months old and has had zero issues except the rash. I think that just comes with the disease. 
But he’s growing, healthy and can poop just fine. I don’t have much experience with TCHD, but if you trust your surgeons and they think that a pull through will work, then i’d go for it.
good luck!
Hi,
I have a 1 yr old that was diagnosed with sshd at about 1.5-2 weeks old. He had his one stage pull-thru surg at approx 5 weeks old and has done absolutely FANTASTIC! As far as the hd goes we have had no issues at all to date. We are only dealing with a persistant diaper rash which is apparently commen with hd children. I will tell you that the ONLY way that we were able to get the rash (total breakdown of skin) to heal was with a product called iLEX which I found out about on this site. It is a little pricey however totally worth it and may be good to have on hand so if there is any skin breakdown you can treat it immediatly. We ordered it from rite-aid but I think that you can order it from anywhere, ever the counter. Every case of hd is different as is every outcome however we are completely pleased with the outcome we have received. We were so blessed to have our surgeon at the cleveland clinic. He is amazing!!! Good luck with your little one! If there is any more info I can give you please let me know.
The vast majority of pull-through surgeries are highly successful. You are not likely to hear about that on a forum where individuals are going for help.
So please don’t be anxious. My DD has LSHD and her surgery was two months ago. She looks and acts absolutely perfect. Her growth is consistent. She poohs alot. We are thrilled with the pull-through. She’s alive and recovering.
my son had an ostomy until he was 6 months old. He had LSHD and had a 3 part surgery. He has been bag free since March and is doing great!!! The only down side of any of it was the hospital stays, but who likes hospitals? I was concerned about the bag getting in the way of rolling and crawling, it may or may not have been an issue, but luckily we were able to fix things before he started any of that.
so far things have been great, but it’s only been like a wk and half. I hope to have continued success.
Anuj is 14 months old and its been more than six months that he has had a pull-through. Like everyone said, rash was the major issue and initially he had pains due to gas. Gripe water worked like a charm and the rashes takes its own time.
He is over all of those issues now. So do not worry about it. I would make sure that the doctors performing the surgery is experienced enough to do it. Otherwise I would look for another hospital with more experienced staff.
oh and one more thing. Our doctor’s criteria for pull-through was enough weight gain to deal with the surgery and the max being 2 years.
Their rationale was that the earlier it gets done, the easier it is to train them with potty training and all.
We were fortunate that Anuj met the criteria and we had great doctors to work with.