A Story of Courage
ostomates! The story I'm about to tell
is, I'm told, not a very common one. My
family has a disease known as Familial
Polyposis which is a hereditary disease (that
is potentially cancerous), that causes polyps
in the small intestine. Because of
this, I and several members of my family, have
or have had an ileostomy.
My mother was the
first one to surgery about 10 years ago.
It seems that the disease started off with her
parents or grandparents in Italy, as I have
cousins and uncles over there that have either
an ileostomy or some sort of variation of the
treatment given to Familial Polyposis
sufferers. My mother has since passed
away from kidney failure.
My brother Mario who
was the first sibling to get "the bag" has
since passed away. Since then, my
brother John, and my sister Josie and I, have
had the operation to give us "the bag"
also. Another brother, Sam, had "the
bag" for a short period of time. Yet
when they operated on him, they created a
pouch" inside him so that a reversal of the
bag was possible. This was done at his
request. My sister and I also have this
option, but having seen the problems that Sam
went through, and on the advice of our doctor,
we have not gone through with this operation.
The surgery however
does not end there. Another brother, Tom
was fortunate in that he had the operation but
was never given the ileostomy, as little of
his intestines had to be removed. Yet he
still must go into hospital periodically to
get the remaining polyps burned out. My
eldest brother Gerald however, is the most
fortunate of all. Thankfully he has no
polyps in his bowel, Familial Polyposis
skipped him completely. I say thankfully
because he has three children who have a far
less chance of getting the disease.
Unfortunately the children of my other
brothers and my sister, and any children I or
my two single brothers may have in the future
are at greater risk, as the disease does not
stop at us.
practically raised in the hospital environment
due to Mum having her first operation when I
was three, when it came to my turn of having
the operation, I thought that I could handle
the operation without any problems. It
is amazing how you can talk yourself into
believing that everything is fine. That
is until you come up to the first time you go
to the beach or the first time after the
operation that you go out with a group of
friends and the bag makes noises or plays up
in some way. I know how insecure and
awkward it can make you feel, even though
everyone around you knows what has happened to
This is why I wish
that back when I had my operation, just under
four years ago, there had been an Group like
Y.O.U. as even though you think you have all
the support family and friends could offer,
they still do not know everything you are
going through. I can say this because at the
time of my operation, my brother and my mother
had both recently passed away and my only
relative with a bag was my brother John and he
had only had it about 18 months.
Therefore a lot of problems (not just
medically speaking) that were happening to me,
he did not know about.
Fortunately, in my case, I have a great
doctor, who helps me out a great deal, Yet
these days, with the formation of Y.O.U., no
one need feel isolated or alone.
What ostomates must
realize is that there is always someone out
there who has been through what you are going
through and who has overcome the problems you
are still trying to deal with.
Reprinted from the
"Thoughts of YOU" membership folder.
Most stories were written from the early to
Young Ostomates United Inc