Help - Tummy, GI, bowel question

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Hi,

I need some help or ideas and wondering if you all have a similar problem with your children.

Asher has gastrointestinal dysmotility, confirmed during his g-tube placement when the surgeon saw his, and I quote, "incredibly distended colon" which was full of air/gas that Ash was not able to push out his rectum. Okay, so now he is on g-tube feedings - liquid formula - and whatever he eats during the day (which is hardly anything). He's getting more nutrition which was the main point of the g-tube, but, what I'm wondering about has more to do with his bowel movements.

For around the past year, Asher has rarely been able (or willing?) to poop out a bowel movement by himself. Rather, it takes a baby suppository (just stuff to make the poop soft no stimulant in it) to get him to poop. And, his poop is already really really soft from the Milk of Magnesia he takes. I know that sometimes he withholds his poop - encopresis, but there are also many many times that his body just doesn't seem to go. Even with his poop being very soft, his body still doesn't seem to go.

Anybody else struggle with this? Any solutions? Is this part of the whole autonomic nervous system dysfunction? Besides some witholding behavior, is it possible that he just can't get the poop out without the stimulation that a suppository creates (even without a stimulant)? He doesn't seem to have the other dysautonimic (sp.?) symptoms that I hear about, but this and bladder control are a big one for him. FYI, Asher is 3, not yet diagnosed (we are waiting for results for a biopsy,etc. done by Shoffner), has muscular weakness, hyperflexible joints, intense fatigue, and cognitively seems to be a smart cookie.

Help!

Anne R