DownSyn Forum

Momof6 · Posted: April 03 2009, 12:28 PM Post subject: Hirschsprung's questions.....

Hi everyone. I don't post much but I am here reading everyday. I am so thankful for this board and all you great people. I really don't know what I'd do with out all of this.

I have a call into Austin's surgeon, but it's Friday and it's not a big problem so the nurse said she would get back with me later today or Monday. I thought I'd get faster answers from all of you.

Austin is 6 months and had his surgery Dec 8th. He was lucky and was able to have the pull through all at once. We were told that he would get the rashy bum for about 6 weeks. He went through times were he'd be really bad and others where it would be all cleared up.

Well this morning whne I was changing him I noticed his butt was getting the blisters back, and 20 minutes after his first diaper change he pooped and I went and changed him right away. Poor little man, the blisters broke and started to bleed. This was the worst I have seen it. So bad that the blood was running down his butt. Now I change him more than I should and he is so easy to tell when he's pooping because he gets the hipcups, I'm right on top of the BM's. He never sits in it more than a few minutes. So here are my questions:

1. Why does he still get the rashes with blisters? (it's like his butt gets burned and the skin melts off )

2. Is his poop different than a person who doesn't have HS?

3. How long will this go on?

4. What kinds of butt pastes do you use for protection?

5. And is it normal for him to be really really stinky? ( I mean he's bad. Reminds me of when you walk in to use a port-a-potty in the middle of summer )

Thanks for all your help. You all are just awesome. Hugs.

_________________
~Christine~
Mom of 6
Brandon ADD/ADHD 19, Chelsea 16, Connor 14, Logan 9, Cody 6 & Austin 4 ( DS & Hirschsprungs pull through 12/8/08 ) diagnosis 10/28/10 Colonic Neuropathy, 12/16/11 dx with seizure disorder, neurogentic bladder...Monti Cath 11/9/12
http://www.caringbridge.org/visit/austinpaquin

I think I can, I think I can.
Climb the highest hills in all the land.
(If you think you can, you can.)
He could and he did !

I say CHEESE !

julesinottawa · Posted: April 05 2009, 5:54 PM Post subject:

My little guy doesn't have Hirschsprungs (we don't think) but he had surgery with a colostomy put in last month. I can tell you that it's pretty stinky when we open that bag!!! With the colostomy they gave us a powder called stoma powder (I think) to use if the skin around got rashy. I also have heard of others using it in the diaper region post pull through. I think the poop is a bit different because it isn't processed as much as a person who has their full bowel and colon. I think it depends on how much was taken out. My little guy had a section removed and we're hoping to have things reattached eventually (after heart surgery) and we'll see the surgeon on Tuesday to find out more about the part that was removed. I hope you're able to find solutions. BTW, Austin is a real sweetheart!

_________________
Julie, wife to Jason, mama to Olivia (Sept 00), Ethan, (Sept 02) and Leo (July 08)Ds

Momof6 · Posted: April 06 2009, 7:42 AM Post subject:

Julie,

Your little Leo is just the cutest. I hope you get your answers soon. Please let me know what they tell you. Thinking and praying for the simplest answer. Hugs.

_________________
~Christine~
Mom of 6
Brandon ADD/ADHD 19, Chelsea 16, Connor 14, Logan 9, Cody 6 & Austin 4 ( DS & Hirschsprungs pull through 12/8/08 ) diagnosis 10/28/10 Colonic Neuropathy, 12/16/11 dx with seizure disorder, neurogentic bladder...Monti Cath 11/9/12
http://www.caringbridge.org/visit/austinpaquin

I think I can, I think I can.
Climb the highest hills in all the land.
(If you think you can, you can.)
He could and he did !

I say CHEESE !

Lkg4dmcrc · Posted: April 07 2009, 11:55 AM Post subject:

I feel like the queen of rashes/hirschsprung's/poop most days. I swear I never wanted to know this much!

Cael has had two pull throughs for his Hirschsprung's. The first one, he had a rash for 6 weeks. The second one was in October and he still gets bleeding rashes.

I use every kind of butt paste possible. The most important thing is to never ever go without it. If I do even once, he gets a nasty rash that takes a good week to clear up. And make sure you get the poop off ASAP - even if you have to have him hang out naked with you wiping it off right away - that is what you do.

As for smelling like a porta potty - Cael had this the other week. It turns out he is completely backed up and full of poop. He poops 15 times a day and he is still full of poop. We are back to cleaning him out once a day for a while to see if that helps. When your kids poop starts smelling really bad, it means that it is in there too long and you need to get it out faster.

Also, iron supplements will wreak havoc on his gut in terms of mobility, stench, color, etc. It will slow him down and that causes other issues. We learned this the hard way.

Do you use probiotics? They help regulate the poop a bit and might be helpful with the rashes.

_________________
Liz

"Doctors pour drugs of which they know little, to cure diseases of which they know less, into human beings of whom they know nothing."
- Voltaire

Mom to Cael 9/07 Ds and Zane 10/05

Cael's Caring Bridge Site
http://www.caringbridge.org/visit/teamcael

julesinottawa · Posted: April 12 2009, 7:05 PM Post subject:

Hey, I thought I'd let you know what happened at the surgeon's last week. The doc was quite happy with the healing and all and said that Leo's case is quite unique. Apparently they don't see this type of thing unless it's associated with an imperforate anus (not the case with Leo) so they are kind of stumped as to why he had this huge loop of bowel (the size of a wineskin is what they said). But the good news is that he's a good candidate for a reversal and putting things back together.

Speaking of probiotics...Leo is just 9 months but I'm going to try starting him on yogurt soon (it's already in the fridge). I want his gut as healthy as possible!

What happened with Cael's first pull through that they had to do another one?

_________________
Julie, wife to Jason, mama to Olivia (Sept 00), Ethan, (Sept 02) and Leo (July 08)Ds

Anja_Huebel · Posted: June 02 2009, 12:36 AM Post subject:

Hi,

Our son Christopher has Hirschsprung's. Yes, Christopher often smells bad Wink

He will be 4 years old in August and had his pullthrough at 2 months. And he still has problems with the skin on his bum. But I don't think he is typical that way. Christopher has very frequent, soft bms.

Sometimes his bms are lighter yellow and thinner and really burn his skin. We air his bum as much as possible and change him up to 10 times a day. He gets a stool thickener calle Mucofalk made from powdered psyllium husks. We just mix it in his cereal in the mornings and in his pureed fruit in the evenings. We also give him probiotics.

The very best paste to use is Ilex from Medcom Biolab:
http://www.medconbiolab.com/ It's really effective. It sticks to the skin and allows it to heal underneath. There's also a really good yahoo group for Hirschsprung's, where you get tons of advice: Hirschsprungs_Support_Network@yahoogroups.com

Thinking of you!
Anja

_________________
Anja with Philippa (* 02-17-2003) and Christopher (DS, * 08-07-2005)

MamaCarrie · Posted: June 02 2009, 1:18 PM Post subject:

Isaac had horrible rashes for the first couple of months and we tried just about everything on the market before I found Northern Essence diaper salve (I use the sensitive skin kind, it has a great lemon scent) and it has been fabulous. It also works w/cloth diapers... so many creams/salves/ointments don't. Though I confess right now all three littles are in disposables until I can get a better handle on my laundry! We went on vacation last weekend and used Huggies and Isaac *and* Calder both got rashy, when we got home and switched back to our generic Target brand they both cleared up.
Hope Austin is doing better!

_________________
Carrie
Mama to:
Bennett (9/96), Merrick (1/99), Giselle (11/04), Calder (4/07), Isaac (7/08 ) and Jotham (4/09)

http://mommypress.com/itllturnup/

Karien · Posted: June 18 2009, 3:21 PM Post subject:

Hi there
Its good to hear about other children who also had Hirsprungs
I heard about it the first time when Kallen(3years3moths) was born.
He had a colostomy which was uncomfortable- it started to leak when I put him on his tummy and then I had to change it, so we couldn't put him ons his tummy as much as possible. Lucily it was reversed at the age of 7moths
Is a pull through when they romove the affected part of the rectum? I didn't realise that they might need it a second time.
Kallen was drinking rice milk,but during desember whe took him off and the loose stools and rashy bums disappeared. He wasn't eating well, so we kept him on a bottle to ad extra calories. He now drinks Rooibos Tee with laktose free milk, but still doesn't eat fruit. So now we sometimes struggle with constipation
I found that if I cook lentils and liqudise it, and ad it to his meals it acts like a brush to his colon.
Hope your children are much better
I also used cornstarch in his diapers- it helped somewhat