AH> MH>  We have had to use a combination of Miralax and enemas
AH> MH>  to keep things under control.
AH> 
AH> 
AH>           You do what you have to do, eh?  Sounds familiar... [wry grin].

Yes.  Very true.

AH>           Glad to hear that!  In SURVIVOR we answer when we can &
AH> whatever
AH> you have to say won't be dismissed as "old news" within the next few
AH> days....  ;-)

Good to know.  :)

AH>           So the "transition zone" has in effect been
stretched by the
AH> lack
AH> of response lower down, and now you're trying to get it to shrink back
AH> again
AH> with more aggressive use of laxatives & enemas??  I'd say it's worth a
AH> try....  :-)

Yes, that is exactly right.  

Hirschsprung's is when there are no Ganglion cells present in a section of
the bowel.  Normally, these cells migrate down the entire bowel before
birth.  For unknown reasons, in people with Hirschrung's, the migration
stops too soon and doesn't go all the way to the end.  

The "transition zone" is the area of the bowel that goes from
having the Ganglion cells (which are needed for mobility) to where there
are none.  The Ganglion cells tell your brain (automatically) that
something is there and "move it along".  Without these cells, the
only way to get things moving is a manual/physical stimulation like an
enema.  

AH>           I'm not a great fan of surgery either.  I reckon it may be
AH> necessary at times when there is no other long-term solution... and that
AH> does seem to be how things are re the portion with no nerve cells.  But I
AH> understand why you'd want to keep any surgical intervention to a minimum
AH> in
AH> this case.  As a parent I've balked on occasion at somebody's idea of a
AH> dramatic rescue mission... and eventually forced them to admit they could
AH> probably use a kinder & gentler way of achieving the same goal.  If
AH> laxatives & enemas don't work, you'll know you tried.  But once a bit of
AH> anatomy has been removed you can't put it back.  :-)

We just had an abdomen xray this past weekend.  The official results are
not in yet, but from what I saw - the plan appears to be working!  The area
is not only not as wide, but not as long either.  By a good inch or two.  

The less that needs to be removed, the better the long term success.  There
is about 6 inches that have no cells that have to go.  There is another 6
inches that is distended - of good working bowel.  If we can get that to
maybe 2-3 inches, that would really help.  From what we have been told, you
can have up to 12" of bowel removed with no real long term side
effects.  My personal goal for him would be no more than 8" (since
6" is a given).

- Mark

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