Grace’s Story

A Story of Courage

Hi fellow 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.

Having been 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 you.

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 mid 1990s

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