For young people: JJ’s tips on coping with Crohn’s or Colitis

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.

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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.

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 to help start the conversation with your teacher.
• Watch a video of Scarlett sharing her experience of school.

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

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.

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!!!

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.

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.

Follow JJ on Facebook at My Crohn's Journey