It takes guts to live with Crohn’s or Colitis, especially when you’re a young person. Nobody knows this better than JJ, our superstar supporter and award-winning fundraiser.
JJ was diagnosed with Crohn’s when he was 7 years old, and has been on a mission to raise awareness of the conditions ever since. With a bit of help from Riley (the star of our Meet Our Crohn’s and Colitis Cats story) and some other amazing young people, JJ gives his top tips for other kids coping with Crohn’s or Colitis.
Always get permission from your parents or carers before doing anything online.
Tip 1 – Learn about Crohn’s and Colitis
When you first get Crohn’s or Colitis, it’s a little bit scary and the doctors say LOADS of stuff you won’t understand. I would say find out about the condition to make sure YOU understand it, as it’s part of your life now. Crohn’s & Colitis UK do a really good book for kids, so go to their website - but make sure you do this safely with an adult.
- Read or watch our Meet and Crohn’s and Colitis Cats story.
- Older kids – you may find our All About Crohn’s and Colitis information helpful to understand your condition.
- Tell your parents or carers to read the Supporting your child with Crohn’s or Colitis information guide.
Don’t worry! Life becomes a bit different but it’s really just about remembering to do a few more things, like taking your medication.
Tip 2 – Get support at school
Although it’s important to talk to your family, it’s REALLY important to have support in school too. I didn’t realise how important this was until Year 6 when I had an amazing teacher who made things so much easier for me. Make sure it’s someone you can trust and who you feel comfortable having embarrassing talks with!
- Show your teacher CICRA's information for schools.
- Older kids - you can create a personalised talking toolkit on our It Takes Guts website to help start the conversation with your teacher.
- Watch a video of Scarlett sharing her experience of school.
I do every activity I can, and I still go to my friends’ houses. I had 100% attendance at school until I got the diagnosis, and the only reason I miss school now is to go to hospital appointments, which isn’t too bad.
Tip 3 – Don’t isolate from your friends
Sometimes when you flare it can make you feel uncomfortable going out, you end up letting friends down a lot!! But you should always try to reconnect with your friends - invite them round to watch a movie or do an online group call. Good friends will understand so let them be a part of your Crohn’s or Colitis world.
- Get creative – we have lots of fun ways you can get together with your friends to raise vital awareness and funds to help people like you with Crohn’s and Colitis
- Older kids – you can create a personalised talking toolkit on our It Takes Guts website to help start the conversation with your friends
- Or you could send your friends one of CICRA’s support cards – to let them know how they can help you
It really makes me happy when people talk about Crohn’s and Colitis because you should never be embarrassed to talk about it. It’s better for everyone to know – instead of just keeping it hush hush.
Tip 4 – Be prepared
Be ready… A flare can happen anytime anywhere so know where the toilets are, carry a Can’t Wait Card (you can get one of these from Crohn’s & Colitis UK)… and relax. The more you worry the worse it feels!!
- Ask your parents or carers to join our amazing Membership community to receive a Can’t Wait Card and Radar Key to help with toilet access. If you’re aged 16-18 you can sign up to free membership yourself.
- Show your parents or carers our information on Bowel Incontinence for tips on preparing an emergency kit for when you’re out.
Tip 5 – Stay positive
When you’re in a flare remind yourself it won’t last forever. Look at pictures of all the good times you have had when you’re in remission and look forward to enjoying those times again. You will get those times again sometimes it takes longer than others but the flare will pass.
- Check out CICRA’s emotional wellbeing toolkit – it can help you understand your feelings and has ideas for keeping well in your mind as well as in your body. There’s even some tips for your brothers and sisters.
- Mums, dads, and others who care for you might need some support too. Let them know about our Parent to Parent helpline – a confidential listening service where they can chat to another parent with a child who has Crohn’s or Colitis.
I feel fit and healthy now. There are ups and downs, but I just enjoy the ups and make the most out of life.
Tip 6 - Exercise
Exercise is so important. It keeps the food moving and helps with the pain. Sometimes it will feel like the last thing you want to do BUT make time for it because it will help. Find a sport you love too because if you enjoy it, it’s more fun!!!
Being diagnosed hasn’t stopped me or changed my life much. I still train six hours a week with my gymnastics team and have competed regularly. I love doing gymnastics – especially tumbling. I’ve always tried to just keep doing what I love.
Tip 7 – Don’t give up
It is really important to remain positive. I think of Crohn’s as just a tiny bit of me. Never let it stop you doing the things YOU want to do. If you feel it might help, research famous people with Crohn’s or Colitis, there are so many who have achieved amazing things in sport, acting, singing, magic, and you wouldn’t even know they had it.
- Take a look at the famous ambassadors who support Crohn’s & Colitis UK to get inspired about what you can achieve with Crohn’s or Colitis.
- You don’t need to be famous to be absolutely amazing – read about other young people who have been through the same things you have and come out the other side in The Unstoppables.
Look for the good things. Even when I was ill, I was still trying to enjoy everything – I think I got through a whole box set of Friends in a week! I’ve always tried not to worry about it as stress makes the symptoms worse.
Tip 8 – Ask questions
Some of the new things you will hear will sound scary, like feeding tubes and liquid diets, but they work and you learn not to worry about them. So ALWAYS follow your doctor’s advice. If you’re worried ask questions, as the adults involved in your treatment will help you.
When I started on a liquid diet (Modulen), my mum asked me if I was ok to have it in the school dining room with the other children. I said yes because I really wanted to stay with my friends! The school told everyone why I needed it and they understood. Everyone saw me having my drink once, and they never thought about it again.
Follow JJ on Facebook at My Crohn's Journey