I'm the proud mum of two courageous children. A 9 year old ostomate and a 12 year old who can change a stoma bag with tender loving efficiency.
This is our story...
By the age of 3 Spike’s large intestine had stopped working.
He was diagnosed with chronic intestinal pseudo obstruction (#CIPO), a rare condition where the muscles and nerves that work together to propel food and poo along the intestine don’t work.
The only option available was for him to have an ileostomy.
This is an operation that creates an opening in the abdomen to drain poo straight from the small intestine into an external bag which is emptied by hand. It seemed such a drastic and life-changing intervention but, despite our worries, it has turned out to be a very positive step. And even with the rapid learning curve involved in dealing with the daily emptying and changing of his bag, it restored a relative sense of normality to our life.
However, many of the things that Spike continues to experience are painful, invasive and very unpleasant for him and the whole family. His bag needs to be emptied every few hours (day and night), it needs to be changed daily and it frequently comes away from his skin. We regularly cancel plans, sleep overs aren't an option and one of us has to be with him 24/7.
There are many other things that have changed our lives. Things that no one ever talks about. Burnt and painful skin, input versus output monitoring, the hours spent washing, the electricity bills that soar, the struggle to find clothes and products that are child friendly, the psychological trauma, the anger, guilt, fear and the look of repulsion upon peoples faces when things go very very wrong.
Despite all of this we have managed to give Spike as normal a life as possible. He attends mainstream local primary school, he has been chosen to dance with the #LondonRussianBalletSchool, he plays in the street with other children and on the surface he seems a normal happy boy.
My ostomate is beautiful, he is kind, he is truly incredible and I am a very proud Mum.
"I feel happy but different and sometimes a bit left out because I can't do what other kids do because I don't have the energy and things. My best friends are kind to me and tell the people who aren't letting me play in games play in games.
I want my bag because I feel comfortable with it but don't like it when it comes off and when it has to be changed."
There are quite a few support groups out there. Here are two that we like.
Breakaway - a charity who offer support to children with bowel and or bladder diversions/dysfunctions and their families.