Amber’s Story

A Lot of Questions ... Always Answered Quickly and Honestly

Hi, my name is Amber and I will be 24 in December this year. I was diagnosed with Neuronal Intestinal Dysplasia (NIDS) in May 1996 and had a stoma formed (which I named “Hilary”) in October 1996, two months before my 8th birthday. My life consisted of many hospital admissions, and visits to outpatients and stomal therapy appointments. 2002 was the first year that I was not admitted to hospital.

When I was asked to write about how my colostomy had affected my teenage years it really made me stop and think. My first thought was I didn’t have any emotional trauma reaching puberty, and I still don’t to this day. I have had a lot of questions along the way but I have always had those answered quickly and honestly. I believe that with the help of my Mum, I learnt at a very early age that my stoma (Hilary) was to be my best friend.

I do have days when I don’t think that Hilary is my friend at all but it doesn’t take me long to realize that is not the case. I believe because I had my surgery at an early age, and everything was discussed openly in an age-appropriate way for me to understand, that these are the reasons I cope the way I do today. I find it very difficult to explain my coping strategy, as I only ever remember being this way.  In saying that, I never think about Hilary, unless she is misbehaving, which “she” can often be.

If you would like to read more, go to “Wilma's Story” and “Jessica's Story” in the YOU Stories section.

The above was presented at the Panel Discussion as part of Y.O.U. Inc's "Let YOU Be Heard" Day (October 2012)

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