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   
      
   --- WWIVToss v.1.50    
    * Origin:  http://www.weather-station.org * Bel Air, MD -USA (1:261/1304.0)