Your IBD Story
Telling your story can be really helpful for others, and give useful insights to everyone about what living with Inflammatory Bowel Disease is really like for children and young people, and their families.
You can choose if you want to be identified with your story, but if you would like to tell your story anonymously, it can still be useful because it is the real experience of a real person. If you would like to remain anonymous, email your story to and just state you wish it to be anonymous.
If you are happy to be identified, you can tell your story by writing to us, or you can tell it to camera as a video. Make sure to include your name and current age. We’ve suggested some questions to help you think about what you may wish to include, but what is most important is that you tell the story you want to tell, and that you write about the things that matter most to you. Your story is yours and we will get great insights from whatever you tell, and anything unusual, memorable or important to you is always helpful.
If you video yourself telling your story (on a smartphone is fine), we can edit it for different things we might use it for. It’s best if you are well lit and the microphone works so we can hear you clearly. Once completed, fill in and email us the Photo/Video Consent form to . If you have chosen to film yourself, as video files can be too large for email servers, you can use one of these sites:
https://wetransfer.com https://transfer.pcloud.com
Always keep your copy until we confirm we have received your file and it works.
If you are a child or young person with IBD, you may wish to tell us about:
When you wear diagnosed and what happened leading up to that point, when did you notice something was wrong? How did you feel when you were told your diagnosis?
How has your life changed as a result of IBD before or after diagnosis?
What has your experience been of medical care?
How do you feel about having IBD?
Talk about your friendships and family relationships since having IBD.
What things about IBD make life difficult and in what way is it difficult?
Talk about positive things that have happened, or people you have met.
What things have been really helpful for you?
If you were to go back in time, what advice would you give yourself before you were diagnosed?
Anything you would really want people to know about what it’s like to be a young person with IBD?
If you are a parent or relative or friend of a child or young person with IBD:
Talk about what happened before diagnosis, when did you first think something was wrong?
How did you feel once it was diagnosed, and how did you feel when you were told about IBD?
What has your experience been of medical care?
How do you feel about IBD and what impact has it had on your family or friendship?
What things have been really helpful for you?
Talk about positive things that have happened, or people you have met, linked to IBD.
What advice would you give yourself before any of this happened, what would it have helped you to know?
Anything you would really want people to know about what it is like to have a child affected by IBD?
Please return completed forms to
CICRA is the operating name of the Crohns in Childhood Research Association, a charity registered in England and Wales (258197) and in Scotland (SC037554)
Registered office: Pat Shaw House, 13-19 Ventnor Road, Sutton, Surrey, SM2 6AQ