This short, powerful piece comes from a mother whose son was diagnosed with very early onset IBD and was inspired by reading the story of another mum. Names have been changed.
Our beautiful son Jay was diagnosed with having IBD in May 2017. I will always remember that date because not only was it incidentally ‘World IBD day’ it was also a day after his 5th birthday.
I remember feeling immense sadness which has stayed with me on and off since that day. The best way I could describe my emotions is that they were similar to grief. I truly believe I was grieving the life my son should have had.
I remember being convinced that the doctors had it wrong and would daydream that it was just a nasty bug. Once I realised that it wasn’t just going to go away, I felt angry, “Why is this happening to my little boy, to our family?” It just didn’t seem fair. I’m still working on the acceptance stage. I just can’t bring myself to give up on that day dream yet.
Jay has been amazing, as a mother I am in awe of his resilience. He takes the numerous blood tests in his stride and even though I can see when he is in pain, he doesn’t let it affect him day to day. He is coping better than I am!
As a family we have a motto that we will not let crohns stop us doing anything that we want to do and more importantly Jay. We don’t want to make it a big deal.
I found CICRA so helpful and informative, especially in those early days. They put me in touch with other parents and it was so invaluable to be able to talk to other mums in a similar situation to us. I now find myself offering advice and support to other mums with a child with IBD.
We have been lucky, Jay has responded well to the medicines and at our last appointment his paediatric gastroenterologist has agreed that he is happy to trial Jay off medicines completely after Christmas to see how he responds. Of course I am thrilled, the possibility of Jay living drug free with crohns would be amazing, but it has also opened up lots of other emotions, worries and concerns. IBD is so unpredictable you never know what is going to happen, but I will have all my fingers and toes crossed that he copes well and we will be able to manage it drug free.
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Telling your story can be really helpful for others, and give useful insights to everyone about what living with inflammatory bowel disease (IBD) is really like for children and young people, and their families.
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