I have spina bifida at the c5-c6 level, which means I'm paralyzed from
about the upper chest down (I use a motorized wheelchair). I've had a urostomy
since I was a baby because I was born with exstrophy of the bladder (goes with
spina bifida). My bowel situation is that I usually need digital stimulation,
but I wear a diaper because sometimes I have the opposite problem. Because I
don't have full use of my hands/fingers, I can't do the bowel program myself
(or change my own diaper). I'm a college student, I moved into the dorm last
year, and I have attendants who take care of it for me, along with bathing,
getting dressed and transferring into my wheelchair. When I'm at home, my
father usually does it.
I've heard from a bunch of different people (some in this website, where
I've been lurking for a while) that a colostomy or ileostomy would be easier
for me to manage. At least, I could probably empty the bag by myself, which
would give me more independence than the situation I'm in now. (I can empty my
urostomy bag on my own, but I need help to change it.) My father said he
wouldn't give consent for the surgery, but I could decide for myself when I
turned 18 (this year). So now it's up to me. My dad's insurance won't pay for
it because it's not "medically necessary" - there's nothing wrong with my
intestines, the problem is because of my spina bifida. But if I really wanted
to do this, I could get the money.
Should I go for it? I'd be really interested in hearing from anybody in a
wheelchair who could give me an idea of how easy it would be to deal with the
bag sitting down and not being able to use my hands that well.
hat is a tough one! I can't say one way or another how it would help you.
There is another poster in this website that has spinal bifida. She has posted
under various names in the last 8 months or so. I believe her picture is
posted on Stuarts Online Chat and Webpage.
I hope someone here can contact her and help you with your issues. We can
help you and point you in the right direction for research. The more
you have the better choices you can make for yourself. The reasons you
stated seem to make a good case for you. Only you can really make that
decision and it is a big one.
I really admire your tenacity and ability to seek some autonomy in your