Are there any remedies or creams people are using for diaper rashes related to Hirschsprung Disease? My wife and I have tried them all
The only thing that’s worked for my 2 girls is Ilex skin protectant. It’s expensive but it offers the best protection that I have found. Though we can still have bad diaper rash depending on their diets.
Hi, Thanks for the reply. One of the things we always ask our doctors are
questions about her diet. Should we try to get her to eat certain foods
etc? Perhaps what she is eating is triggering her rash episodes? What are
some of the foods we should avoid. We live in Canada is Ilex skin
protectant a prescription or over the counter. Also are both your girls
getting rashes that are hirschsprung related. Regardless thank you very
much for the info.
Jared
-----Original Message-----
From: roth5899 [mailto:hirschsprungs-cpt3483@lists.careplace.com]
Sent: May 31, 2007 1:35 PM
To: jrogers3@cogeco.ca
Subject: Re: [hirschsprungs] Diaper Rashes
My oldest girl had 1/2 her colon removed so her stools are always loose and we’ve battled it until she started using the potty and pull ups. Her younger sister had only 1/4 of her colon removed and has thicker stools but still suffers diaper rash regularly. Vegs/fruits seem to bring on more diaper rash.
Ilex is over the counter and no Rx necessary. My local pharmacy special orders it for me as it’s not typically stocked anywhere.
Hi there,
My son has not yet had his final surgery, but he has really sensitive skin. Just with dialations he has gotten a diaper rash already, we tried a paste with calaseptine and stomahesive powder. You put the paste on and pat it dry I hope that helps! Good luck!
HI,
Thanks for the suggestion we will try it out and if we find anything else
that works I will be sure to let u know. I hope for your sons sake and your
sanity that after the operation it does not get worse. I sometimes wonder
if what my daughter has is something more than a rash. I does not look like
any rash I have seen before. Open red sores that often bleed as well as
what looks to be a diaper rash. All we can do is love our children and try
our best to get them past this stage of their young lives. My wife and I
appreciate talking to other parents in the same boat. It is somewhat
pleasing knowing we are not imagining this.
-----Original Message-----
From: sarahncam [mailto:hirschsprungs-cpt3483@lists.careplace.com]
Sent: June 2, 2007 9:11 AM
To: jrogers3@cogeco.ca
Subject: Re: [hirschsprungs] Diaper Rashes
Hi,
I am a mom of a child with TCHD. He has the same issue with the bleeding. Sometimes that will happen and there is not a whole lot you can do about it, but I have found that Calmoseptine works the best with my child. You can get it over-the-counter at most pharmacies if you ask them to order it.
We have had great luck with “Super Duper Diaper Doo” for our son’s rashes. He bleeds at times as well with the rash and almost has like welts. I feel like a bad mom just changing his diaper, it hurts him so. The reason for the rash with children with HD, according to what I’ve read, is that since they have less intestine, less liquid is removed and the liquid is quite acidic. Every diaper change we use “Diaper Doo” just as a protectant. You can’t find it with other baby ointments though…I get it near the pharmacy of my local Target store. We are trying to potty train now…hopefully we will be passed the rashes soon.
kxmom26
Ugh, the dreaded HD diaper RAsh!!! I dont even call it rash, i call it butt breakdown!We have been dealing with the rash for going on 3 years and the only thing that ever works for us is ILEX!!! We have tried them all!!! All prescriptions all pharmacy special orders and all over the counter ones. I hate that Ilex is so expensive and not covered by insurance when they dont actually have a prescription cream that works!! It doesnt seem quite fair! If the rash starts to get little bumps then more then likely its a fungal infection and nystain powder ( which is prescription) works great! WE actually mix the nystatin with maalox and triple paste or the regular desitin and it clears up the fungal part of it in no time. We have a great pharmacy that actually orders the ilex for us and always keeps it in stock just for us so that is great. WE usually buy 3 tubes at a time. Its kind of a pain at first to get used to since it sticks to everything but u get used to it. If the rash is really bad with open sores get a prescription for bactroban and emla ( its a numbing cream ) and apply the bactroban under the ilex… the ilex will still stick to it… trust me!!! OH, and at diaper changes dont peel the ilex off. If a litttle bit of poop sticks to the ilex dont worry about getting it all off, just add another layer on top of it and then every few diaper changes start all over. Wow, looking back at what i typed it sure sounds confusing so if you have any questions just ask lol.
As far as diet we are struggling every single day with that. WE know for sure he doesnt do well on fruits/veggies, and anything with Red dye in it. He does great on rice, bread and pretty much all starches and does surprisingly well on all meats. WE are still trying to figure out dairy… not so sure if he does well with it because he doesnt really care for it. Right now we are just working on trying to find foods that will thicken his poop up so we can potty train him. But Kxmom26 is right about them having less intestine causing more acidic poop. Evans surgeon told us as he grows the little part of large intestine he does have remaining will actually grow and will be able to take out a little bit more acid so that is something to look forward too and in all actuality it has gotten better.
Ok, well I hope I helped some and didnt confuse the heck out of you!! If you have any questions about anything just ask! We have been through it all 
Take Care,
KRIsty
You can order calmoseptine through your local pharmacy:0)
Michelle S
----- Original Message -----
From: “amk” hirschsprungs-cpt3483@lists.careplace.com
To: jstilwel@columbus.rr.com
Sent: Tuesday, March 11, 2008 10:08 AM
Subject: Re: [hirschsprungs] Diaper Rashes
Hi there,
My son is 19 months, he has sshd and had his pullthrough when he was 3 months.
We had a horrible time with awful diaper rash - open sores, bleeding exactly how you described. We tried everything we could get our hands on - Ihels paste, critic aid, stomahesive powder etc. Then finally after reading about ILEX we got some from the states - very hard to buy in Canda. (we’re from Canada too -Ottawa,ON) When Emery was around 12 months we got our first tube of Ilex - I think a combination of the cream plus his stool consistency getting better (thicker) his bum for the first time cleared up. It was amazing. Changing his dipaer, although still often, was actually fun - no screaming, crying or squirming. He started pooping better - bigger stools and thicker - I think the fact that his bum didn’t hurt so much made it easier for him to go all at once. He is now 19 months and his bum has really broken down again. Nothing seems to work not even the ILEX ! I’m so discouraged. I especially hate that I’m back at work and can’t be there to comfort him and make sure his bum is cleaned properly. I’m hoping that he is just teething hence the poop is more acidic. Anyone find a correlation between teething and skin breakdowns? It has been 2 weeks now - I took today off work because it is so bad - bleeding lots. I’m so down in the dumps ! Any advice?? Anyone??
That sounds horrible. Have you tried Butt Paste? My daughter had horrible
diaper rash that caused bleeding, etc. and Butt Paste was the only thing I
found that worked. It worked better than any of the prescriptions we got. I
used it along with Aquaphor and it cleared her diaper rash. Now whenever she
gets even the slightest breakout I put that on and it is gone by the next
time I change her.
That all text below this line will be cut off in your reply
Hi there,
My son is 19 months, he has sshd and had his pullthrough when he was 3
months.
We had a horrible time with awful diaper rash - open sores, bleeding
exactly how you described. We tried everything we could get our hands on -
Ihels paste, critic aid, stomahesive powder etc. Then finally after
reading about ILEX we got some from the states - very hard to buy in Canda.
(we’re from Canada too -Ottawa,ON) When Emery was around 12 months we got
our first tube of Ilex - I think a combination of the cream plus his stool
consistency getting better (thicker) his bum for the first time cleared up.
It was amazing. Changing his dipaer, although still often, was actually
fun - no screaming, crying or squirming. He started pooping better - bigger
stools and thicker - I think the fact that his budidn’t hurt so much made it
easier for him to go all at once. He is now 19 months and his bum has
really broken down again. Nothing seems to work not even the ILEX ! I’m so
discouraged. I especially hate that I’m back at work and can’t be there to
comfort him and
make
sure his bum is cleaned properly. I’m hoping that he is just teething
hence the poop is more acidic. Anyone find a correlation between teething
and skin breakdowns? It has been 2 weeks now - I took today off work
because it is so bad - bleeding lots. I’m so down in the dumps ! Any
advice?? Anyone??__
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I feel for you. The diaper rash is horrible. These poor kids have to
suffer so much. I found that once the diaper rash gets so bad not many
creams work. I tried to get air to his bum to help heal it. I put him in a
bathtub with no water and let him play with washable toys or I used a blow
up pool in the living room and put him in with no water and no clothes on.
It was difficult to keep up with the messes but the air really helped.
I use a hairdryer on cool setting when I change his diaper. After I clean
his bum, I try to let it get some air from the hair dryer as long as he
tolerates.
I found that it makes a difference with what you are wiping their butts
with. I do not use baby wipes. I use cloth like paper towels that I buys
in bulk and cut down to size. I keep a zip lock baggy of some wet ones and
then have the dry ones. I try not to wipe but more of a patting so that it
does not irritate the skin more. Also, I never really take off all of the
old stuff unless it is poop. The less you can mess with it the better. I
use original Desitin (not the creamy) with a layer of powder over top. I
got a cream called Sensicare that really helps heal the sore areas and put
it under the Desitin. I got the cream at www.jrsmedical.com.
I hope this helps.
Crystal, mom to Ian, TCHD, pull thru 4/3/07, 2 years old
----- Original Message -----
From: “pprovenz” hirschsprungs-cpt3483@lists.careplace.com
To: f.allison@myactv.net
Sent: Monday, March 10, 2008 1:13 PM
Subject: Re: [hirschsprungs] Diaper Rashes
Hi
I hope this message gets to the person inquiring about the diaper rash.
My son had HORRIBLE red raw diaper rash after his colostomy reversal surgery.
One day we were at the beach and there was a little salt water pond area that we
had to walk thru to get to the open ocean…I would often sit there and play
with my son as the water was more shallow and less turbulent…after sitting in
that pond, his rash rapidly cleared and disappeared! So for recurrences, I
started soaking his bottom in a bath with sea salts. (you can find them in
TJMaxx in the bath soap and hand cream section…usually marked down)Just a bit,
then dry thoroughly and apply a layer of Calmoseptine cream and a good layer of
powder.
That routine allowed me to manage his diaper rashes and limit the amount of time
he was very uncomfortable…A friend gave me small packets of the calmoseptine
cream, so I don’t know where to find it…the regular desitin would probably do
just as well
Good luck
-----Original Message-----
From: callison [mailto:hirschsprungs-cpt3483@lists.careplace.com]
Sent: Tuesday, March 11, 2008 7:50 AM
To: Kelly, Andrea M.
Subject: Re: [hirschsprungs] Diaper Rashes
Try corn starch for the rashes! It really works. First cream then corn
starch…
on 3/11/08 5:50 AM, callison at hirschsprungs-cpt3483@lists.careplace.com
wrote:
You should be able to…I just googled it and found a couple of places that sell
it…not very expensive…Good luck! Get the sea salts as well…or better yet
go to the beach!
amk
-----Original Message-----
From: MichelleS [mailto:hirschsprungs-cpt3483@lists.careplace.com]
Sent: Friday, March 14, 2008 11:08 AM
To: Kelly, Andrea M.
Subject: Re: [hirschsprungs] Diaper Rashes