[tri-med] Re: kam was super

----- Original Message ----- 
From: "Jude Wolpert"
>i have been told surgery but no one has mentioned colostomy!

Ooops - no one mentioned it to my either until the diagnosis was confirmed. 
I am NOT up to date on current procedures so don't hold me on this but the 
short of it is - they operate and remove the section of effected bowel. They 
can't just stitch the bowel together again and continue as normal as it has 
to heal first so they re-route the bowel to a colostomy until after it has 
healed. In our case it was customary to wait 12 months, they may have 
shortened that or done away with it totally I don't know. Then they reverse 
the colostomy and you pray that the bowel now works :-) After that its all 
over.

A lot depends on how big a section is effected. If they take out too much 
bowel then you can end up with short bowel syndrome (constant runs). My 
daughters was only about 6 inches so no long term issues, she still "tended 
towards constipation" but thats all.

For those wondering what we are talking about Hirschprungs disease is a 
congenital lack of nerve endings in the bowel. Without working nerves the 
stool wont pass through on its own at all ever. In the dark ages when I was 
a kid there were kids who had bowels that literally "exploded" because it 
cant go anywhere by itself. Hirschprungs Disease itself has absolutely 
nothing to do with trisomy - its congenital and runs in families but its 
separate to a trisomy. However the same thing that causes Hirschprungs also 
happens in T-18 occassionally as well. So its not unheard of for kids with 
T-18 to have Hirschprungs. It's probably more common than we realise given 
that the constipation is often blamed on tone and never fully investigated.

>>my momma gut
> is telling me it could be probable as she had he intestinal section for 
> her
> bleed years ago.  a colon section seems a bit of the same.

I agree - its one thing to be constipated and another not to be able to pass 
a motion at all. Seen both and you "know" the difference. There are a couple 
of kids on the list that I "think" Hirschprungs as a possibility with - Kam 
is one.

> you young moms all amaze me!  i was already 29 when i had my first, derek.
> i was 40 for kam!!!

I think the same these days. I dont know how I did it back then, but then I 
don't know how I do it now!!

>>> oops bill is calling as kam is doing the biz right now!
Call Jack!!

Life consists not in holding good cards but in playing those you hold well.
                                            -- Josh Billings

Keep Looking For Rainbows!!
   _--_|\
 /Karen \
 \ _.--._ /
          v Karen, Mum to Alex (12 years, T-18 Mosaic)
http://members.optushome.com.au/karens

                  Building ___ooOOoo__ Rainbows
                       www.trisomyonline.org
                  Families Helping Families On-line

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