Tough Diaper Changes

Hirschsprung's Disease
#1

My son is 11 months old and has Short stem HD. He had his pull through surgery and colostomy reversal at 3 months. We are still struggling with a bad diaper rash - small open sores the size of peas. We go the the surgeons for dialations every 3-4 weeks. He has associated having his diaper changed with pain and it has become a real struggle. I’m having problems applying the powders and cream because he screams and will not stay lying down. I use stomohesive powder and Critic Aid Paste, however, my son has always had these opens sores so I’m always open to try new products. I think I will see if I can find ILEX cream or Super Duper Diaper Doo.

My son has stool in almost all of his diapers I change his diaper 10-12 times a day and there is almost always a stain or small amount of stool. He can go through the night without going but it is not always consistent. Has other people experienced this?

Just looking for some advice on changing him - how to handle his screaming and squirming - also do you use wipes? or do you bath him after each poop? He squeezes his bum cheeks together I have a hard time removing all the stool and don’t want to wipe because it hurts him too much.

Any advice would be appreciated.

#2

My son (2 yrs old w/TCHD)went through a similar time where he didn’t want us to change him.

I gave him many tubs a day and soaked his bum. Ilex works awesome- you can order online directly from the compnay that makes it

http://www.medconbiolab.com.

We used to have to change him 8-9 times per day also, but he has slowed down through the use of Flagyl antibiotic and an anti-inflammatory medicine-- has your son been checked for inflammation in his intestine or a low-grade enercolitis infection? Sometimes that can make the frequent pooping even worse. My son goes through the night without pooping but then other times he goes- it varies. Have your doctors ever tried Imodium? That helped my son a little bit and it could slow him a little so his bum could heal? Let me know if you have any other questions.

Good luck.

Amy

#3

My son had tchd and is 5 now. He also had the bad diaper rashes…but…we were told to NEVER use wipes. I “made my own”.

I took gauze and soaked it in mineral oil. It NEVER hurt his little behind to use that. Also, The cream I found to be the most affective was Vaseline Constant Care Cream. It was AMAZING!!! I didn’t even have to use anything else. (unless you have small bumps too, then it may be a yeast infection and need an antibiotic.) To maybe be of some encouragement, Zach is 5 now, completely potty trained for over a year, and has 2-3 bowel movements a day! He has no problems now. I hope this helps. If you have any questions, please let me know.

good luck,
Chrystal

#4

Yeah, get some ILEX first!!! I order it from a local pharmacy and they keep it in stock just for me :slight_smile: and its only costing me 8.60 a tube… medcon charges more actually and You have to pay for shipping. Also, I make my own wipes. Buy Viva paper towels ( they are the softest), cut the roll in half, take the center out, place in a huggies pop up container and pull the middle up just liek a regular wipe ( it works for us ). WE just started Evan on benefiber this week and wow, it has already made a difference in the acidity of his poop, consistency, and frequency ( i hope its not just a coincidence ). LIke other people said though it could be yeast and if there are bumps then we use nystatin powder. I so feel your pain… We just went through a major bout of diaper rash and not even ilex was working… figured out that Ilex couldnt be topped with A & D ointment!! It was eating up the ilex!!! Thank god we figured it out! I hope some of this helps :slight_smile:

Kristy

#5

Chrystal, Your message gives me hope! Do you mind if I ask if your son is or was on any meds and also- which sugery did he have- my son (who is a little over 2 yrs and also has TCHD) had the “Martin” procedure done at 6 months up here in Boston.

Thanks so much,

Amy

#6

Hi, I just joined to ask this very question. My son had the pull through surgery almost two months ago and we have been battleing a severe rash since then. We used the cream that his doctors prescribed for him and it only got worse, and have tried most everything else also. It is starting to clear up now and the only thing we have done any different is using cornstartch so that the sores don’t “stick” together on his butt-cheeks, and he goes w/o a diaper as ofeten as we can. Wether it has made a difference or not he also has been swimming a few times recently and I had wondered if possibly the chlorine from the poo lhelped a little ?

#7

When we came home from the hospital right after Jaden was born, he had a bad diaper rash. The powder they gave us didn’t help at all, but I switched to cloth diapers and it cleared up.

#8

For some reason this message posted before I was ready…who knows.

I wanted to finish the story. While he was in the hospital for surgery I used disposables and we didn’t have any problems with rash. Unlike most of you we have never had any rash problems after the surgery. In the last 3 weeks the area right around his anus has been redder than normal I assume that is due to the increase number of stools due to the miralax. Anyone else not have a problem with rash? We were prepared to deal with it as the drs had told us we would have a problem. I count my blessings that we haven’t after reading everyone’s emails.