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Explaining Crohns disease to children

If you have Crohn's disease, you may wish to tell your children about it. What you decide to tell them will depend on the child's age / level of understanding, and on your symptoms. Try not to give them too much infomration in one go, as they will find it hard to take in. Instead you may need to keep answering questions as they arise. Here are some suggestions on what to tell them initially:

(for a young child)
I have a poorly tummy, so I have to take medicine from the doctor. The medicine helps me to feel better, but sometimes my tummy still hurts, or I might need to go to the toilet a lot, or I might get very tired.

(for an older child)
I have an illness called Crohn's disease. It means my immune system isn't working right, and it makes my stomach and intestines get red and sore inside. And that makes my stomach hurt, or gives me diarrhoea. There isn't a cure yet, but the doctors have lots of different medicines that can help me feel better. Sometimes I might not be able to eat the same foods as you, because some foods can hurt my tummy. And sometimes the medicines might have funny side effects, like making my face look different. But I need to take the medicines to help my stomach heal.

If you are planning a hospital visit, it is important to prepare your child (though not too far in advance), ensuring they are not scared by you leaving, or by visiting you in hospital with tubes and drips. Younger children may benefit from role playing with a teddy or doll, and a doctor's kit (or first aid items such as bandages).

If you visit your local library, there are likely to be plenty of books covering the subject of hospitals, doctors and nurses, aimed at different age groups. Crohn's and Colitis UK (formerly the NACC) produce a variety of information leaflets (available here) which have more advice on different aspects of the disease.

Try to make sure your child knows that the illness is not their fault (small children in particular may think they have caused the illness by being naughty). And that, even though you have this illness, and may not be able to do the same things as you did before, you still love them just as much. You could try taking up a new hobby together, if you find you are unable to take part in things you previously enjoyed together.

Your child is likely to be upset or angry at finding out you are ill. They need time to let their emotions out. Let them know it's OK to cry. They may benefit from talking to another adult, as they may put on a brave face for you, so as not to worry you even more.

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04-27-2011, 10:32 AM   #1
Senior Member
Grumbletum's Avatar
Join Date: Dec 2010
Location: Western Isles, United Kingdom
Thanks, Rebecca. Just the job :-)
Dx Crohn's terminal ileum April 2011
Ileocaecal resection & partial cystectomy Sept 2012
3.5 years happy remission, in mild flare since Feb 2016 with related Portal Vein Thrombosis

Previous: Prednisolone, Mesren, Omeprazole, Infliximab, Azathioprine
Current: Pentasa, Librax, Warfarin
Helen x
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