Is it Too late for pull through surgery?

Van - posted on 01/29/2011 ( 5 moms have responded )

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Hi my son has long segment hd. He has the ileostomy surgery at two weeks old. He is now 13 months old. Our surgeon recommended waiting until potty training age to do the pull through surgery. I am anxious about the future of my son's health. Do u know any other hd family that waited till potty training age for the pull thru surgery? I am worried! Is it uncommon. I live in Los Angeles CA. R there anyone out there like me?

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Elizabeth - posted on 11/26/2017

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I have an 18 month old who had the reversal done this month. If it was up to us dad and mom ww would've had him do the reversal at age 4. The bag is a huge blessing that allows your child to travel and be in the streets and park. Ever since the reversal all we do is change diapers 2-3x an hour all day. He is constantly crying from having a bloody and raw butt. He has no colon so as he eats (anything, snacks, food, a bottle or even water) it all comes out. It's watery stool so he can't enjoy the outside like he used to when he had a bag because we constantly have to change his diaper or the rash and blood gets irritated.
Let if u need more info.

Elizabeth - posted on 11/25/2017

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My son is 18months old has HD to the extent. He has no colon so he has runny poo. He had a bag for the first 17months of his life. We recently this month November did the Reversal and regret to have done it so early. He is not potty trained and is to young to understand. We wish we would've waited till he was 3 or older where he understands to use the potty. Since he is in diapers he has really severe rash. His Anus area is so raw it bleeds. His butt skin was like new so poop is really tearing his skin. I wish I would've did the reversal later in his life.

Leslie - posted on 02/04/2012

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My son was diagnosed at 6 days....after two surgeries one at 2days old. He has long segment...having no large intestine functioning. My son is now 12 months and still has his iliostomy. He actually has a double stoma. Anyhow, I have not even been given a time for when his pull through will be. They just say....around potty training time, so I don't know if that mean 2 or 3, even 4?? I am nervous because of how often the stool comes out. Will it be like that when he is hooked back up. I have two GI docs and two surgeons I talk to and they both say potty training age. What is your son's stooling pattern if you dont mind me asking?

Christine - posted on 06/29/2011

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Hello Van, My daughter also had an ileostomy - tchd +55cm. I expected she would have her pull through after the age of at least 1.5-2 but she was able to have her pull through at 8 months. I have heard of docs wanting to wait until potty training. I have also read very good success stories - potty training with bm within 1 week after pull through on a child the age of 5. Our doc told us they consider so many things before they decide to go ahead with the surgery - size, weight & weight gain, overall health, diet, hx of enterocolitis, size of the child to accommodate the stretch of the bowel from one place to the connection site etc. From the reading I have done the potty training is sometimes easier when the pull through is done later as the child understands what is happening. I will think positive thoughts for you & your family!

Angi - posted on 06/12/2011

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Sorry for the delay in replying, Van. How are things now? I have not heard of waiting until potty training for the pullthrough. Potty training an HD child can be VERY challenging. I wonder if it would make it harder or easier? Did your surgeon say why?

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