Rachel

My son was diagnosed just before his 14th birthday.

When he was diagnosed, I knew it was a big thing but no-one really told us how big. I stopped looking on the internet because some of the things I found were way beyond what I was ready to cope with.

Then we were introduced to CICRA – a source of information and support. The CANT WAIT card alone was a life saver.

After diagnosis my son was only in hospital for a few days and the biometric diet for 6 weeks worked wonders and I think gave me a false sense of security.

I remember our first family day out after the 6 weeks – I was scanning for toilets, places he could sit down etc etc and didn’t relax and part way through the event I came home with him whilst my husband stayed with our daughter.

The impact of this disease on my daughter is often overlooked. We booked a family trip to Disneyland Paris to mark the end of junior school for her and high school for my son – and wham, he had a flare up – a bad one in the middle of his GCSEs and was hospitalised for 8 days. Not only did she have to accept that mum and dad were tag teaming to be at the hospital and she was being farmed out left, right and centre, she had to deal with seeing her brother very poorly and she was so scared. Then there was the issue that we may not all be able to go on holiday – who would stay with Brad and who would go with her? We did go, with Brad in a wheelchair and the holiday adapted for his needs and me on pins all the time wondering if he was ok and did we need to go to a hospital?

Crohns has made us all stronger, it has given us an outlook and appreciation of life that I wouldn’t change. My son is amazing (don’t get me wrong still a typical teenager most of the time) but he has a determination that most adults don’t possess. My daughter has a compassion that other children her age don’t understand, she doesn’t take things for granted and helps with our charity events to raise money.

I have learnt a lot in three years – I am getting more comfortable about potential signs of a flare up and what is just ‘illness’. I know more of the terms, we are all very familiar with the Bristol stool scale and vocabulary that some would wince at.

We know that VIPoo is an amazing product, having two toilets in a house where someone suffers from an IBD should be a right, holidays are no longer care free – good planning, research and holiday insurance from the moment you book is essential and that’s only the beginning of the list.

I worry about the future for my son and not from a health perspective. He has had two summer jobs and both caused him to health problems, so when he’s ready to enter the world of work how will he find an employer that understands his needs – he’s a hard worker but may only be able to do a certain number of hours each day and may need to use the toilet. He is getting to an age where alcohol will become a consideration and night clubbing with friends, how is this going to affect him. He wants to travel when he finishes his A levels, I want him to do this but it fills me with concern.

My husband and I have had many heated discussions about his health, treatment and other aspects relating to this. Luckily, we’re a strong couple but I know others that have parted because of the pressure of a child with a condition.

share your story of the impact on siblings and the family

When a child has a serious health condition like Crohn’s or colitis, it can ripple across their family and impact siblings as well as parents. We are interested in hearing from families who feel that they have something to say about this. It may be – as in the case of Rachel’s powerful story – that it has shown the strength and compassion of siblings or it may be that a sibling has struggled to come to terms with the changes that have affected their brother or sister. We are developing some information to support the whole family and we are interested to talk with families, whatever the impact. It can be anonymous if you prefer.

We are also interested in hearing from friends of young people with IBD about their perspective on their friend's condition and what it means to them.

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