Musings from an Orthodox Jewish work at home mom of twins with Autism Spectrum Disorders.

I’m pooped

Wilma failed her second anal manometry today.  This is after spinal MRI, Four xrays, countless cleanouts, countless cases of enemas, daily probiotics, daily fiber supplements, daily colace, and a partridge in a pear tree.

Basically we can clean out her colon (at least the bottom part right at the rectum with enemas) but we can’t KEEP it cleaned out and there is nothing we can do to clean out the top part of her intestines—– so we can get the encopresis under control if her megacolon is so out of control that she poops on command on a toilet once a day because it’s “poop time” (but has NO RAIR) (RAIR is the anal reflex that can be measured by manometry—– she failed her second manometry today— think of your knee getting hit by the reflex hammer and your leg automatically moves—– when anything is in her rectum, her anal reflex does nothing).
OR we can fix the megacolon by either cecostomy or perhaps going back to top down miralax type methods which will put her back in pullups and diahhrea 10-17 times a day. As a 9 year old, going back to pullups might be medically a good idea, but psychologically TERRIBLE. The manometry doc likes the idea of fixing the megacolon. The psychologist likes the idea of leaving the megacolon as is and keeping her with no RAIR and never knowing a poop is coming. (fine as long as she’s so regular that she NEVER poops other than poop time and NEVER gets sick with diahhrea—– every time she gets diahhrea she’s back in pullups and all bets are off—- we want her to go into adulthood using pullups every time she poops off schedule?)  The GI doc might be able to talked into cecostomy. I’ll keep you posted.
googling cecostomy and it doesn’t seem terrible but requires an hour on the toilet every night while the saline runs through. Wilma will enjoy all that ipad time— lol.
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