AH>             Ah.  My mother had Crohn's disease, which can occur anywhere
AH> in
AH> the GI tract but is most often found higher up.  That might explain a
AH> lot. 
AH> She was also getting on in years by then.  In my experience kids...
AH> including kids with DS... tend to be more adaptable than the vast
AH> majority
AH> of grownups I know.  :-)

Yes, I know some people that have that condition.  In some cases they remove
the entire colon if it is too damaged.

AH>             We may go camping briefly now & then, and even at the best of
AH> times I may be slow to answer... but please be assured we haven't
AH> forgotten
AH> you.  :-)

We do have an update on things.  It seems the area has not gone down enough in
size and one of the surgeons feels they would have to remove too much bowel -
where it would not give the best results.  They suggested a different
procedure when they inject Botox to relax the bowel to keep things flowing for
now.

We don't like the idea of going with an unproven method - that still would
require being put to sleep, so we have decided to switch back to our original
surgeon (whom has done an operation on our son when he was born).  

We want the best long term results for our son - and if that means getting two
operations, then that is what we have to accept.  The first one will be the
"bypass" or ostomy.  This will be in place for probably 6 months to one year.
Then the second operation will be to "re-connect" the area and all things
should be good at that point.  

It will take that long in between for the bowel to get back to normal size
when they can still use it.  

Not exactly what we wanted to do - but we have to focus on the best long term
result.  We have done our homework and just about all surgeons we talked to
said the same thing.

We have an appointment August 7th to discuss the entire thing with the surgeon
and things will probably take off soon afterwards.  On the positive side, it
should offer him some relief and won't need the enemas every 3 days - which is
not fun for anyone involved.

- Mark

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