Talking… to your children about their condition

When helping your child to understand and manage their condition, it can be difficult to know where to start. But talking about it openly can really help.

Here are a few tips for talking to them – and others – about their condition.

Talking about their condition

Your child may need time to get used to the idea of having a long-term illness. They might accept it initially but then feel upset after they realise it’s not going to go away, or when they have to go through uncomfortable tests and treatment.

Here are some ways you can help:

  • Acknowledge their upset. It’s completely ok not to be ok, and to express pain or unhappiness. It’s not a weakness or an inconvenience.
  • Let them know it’s not their fault. This isn’t happening because of anything they’ve done.
  • Help them find their ‘flare hobby’. If they can find a happy way to pass the time during a flare, it’ll help soften the blow – whether that’s reading, watching films, playing computer games or getting the arts and craft supplies out.
  • Focus on the positive. Emphasise what they can do rather than what they can’t, reassure them that they won’t feel the same way forever. For example, break tasks into manageable steps and make sure you celebrate each success along the way. Also remember to encourage them to make the most of the times when they’re feeling healthy. Perhaps show them examples of people who have flourished with Crohn’s or Colitis, like the magician Dynamo, the swimmer Siobhan-Marie O’Connor, Strictly Dancer Amy Dowden, or former Premier League footballer Darren Fletcher.

When I was diagnosed, I was very quiet because I was in so much pain and I had no energy to talk. I was also scared. If I could go back in time, I’d tell myself that things will get better. They will change.

Evie, living with Crohn's Disease

Talking about their treatment

Crohn’s and Colitis affect everyone differently, but the aim of treatment is to make your child feel better, and then to keep their symptoms under control. Many children’s symptoms improve within a few weeks, though there may also be periods of relapse which make them feel discouraged.  

Here are a few ways you can help:

  • Be as open as possible. Explaining what’s happening in words your child understands will stop them imagining all the different things that could happen. If something’s going to hurt, say so – but also explain that it’ll help them feel better in the long run.
  • Include them. Encourage them to ask questions and describe how they’re feeling.  
  • Make it part of their routine. Try to break things down into small, manageable tasks and make them a part of your child’s routine – so taking medicine becomes just like brushing their teeth or having a bath.
  • Recognise difficulties. Acknowledge any feelings of frustration or discomfort they have – treatment can be hard. But gently remind them of the bigger picture.

One child told me he had scars like me. His dad told him he could tell fibs about his scar, like he won a fight with a ninja, that he survived a shark attack, that it was a Harry Potter scar…I love that!

Sam, living with Ulcerative Colitis

Find out more:

Check out Crohn’s & Colitis UK’s guide IBD in children: a parent’s guide.

Talking about their diet

The chances are your child’s treatment will interfere with their diet. They may have to go on a liquid diet, perhaps taken through a nasogastric tube. They may also become less interested in food as a result of their treatment. This can be worrying for parents – especially if they’re below their ideal weight.

  • Before your child starts a liquid diet, talk to them about what they’d prefer to do during family meal times. Some may prefer not to sit with the family, but this should be their decision so they don’t feel like they’re being excluded. It’s also a good idea to discuss how they’d like to handle meals at school.
  • If your child becomes less interested in food because of their treatment, you could try the following:
  • Keep calm and try not to insist that they ‘finish everything on the plate’. Remember, it’s the condition that’s making them unable to eat, not your cooking!
  • Relax your rules about food and allow your child to eat snacks and calorie-rich foods, at least some of the time. If you’re worried about lost nutrients, check with your child’s IBD team for advice.
  • Try offering smaller meals and snacks more often during the day, or – if your child is older – encouraging them to make theirs when they feel like it.

There were times that the dietary treatment interfered with special moments, like birthdays and Christmas. But Ellie has taken it all in her stride and she understands that she must do whatever is needed to try to be well again.

Donna, mother to Ellie, age 11, living with Crohn’s Disease

Find out more:

Check out Crohn’s & Colitis UK’s guide Food and IBD.

Talking to their school

Given the amount of time your child spends at school, it’s really important to fill them in about your child’s condition nice and early. Together you can put together a plan to help manage their condition at school. Here are a few things you might want to mention when speaking to them:

  • Going to the toilet. Your child may need to go to the toilet urgently and often. They may also need or prefer a private toilet. Make sure the school understand what they can do to help and how to avoid making things awkward for your child if they urgently need to use the bathroom.
  • Eating and drinking. They’ll need to understand the impact any treatment might be having on your child’s diet or appetite.
  • PE and sport. At times, pain may prevent them from being able to take part in PE or may trigger certain symptoms. But, sometimes some physical activity can help. Your child’s participation should depend on how they’re feeling on the day.
  • Missing school and extensions. There may be times when either the condition or its treatment forces your child to miss school. It’s really helpful to agree a process to help them catch up or extend deadlines for homework when needed.
  • Psychological impact. It’s important for your child’s school to be aware of the social and psychological impact the condition can have, and understand what help they can offer without overstepping the child’s boundaries. Getting to know the school counsellor and making them aware of this would be a good idea.

The head of year has been helpful. He gave Charlie a ‘time-out’ card which means he can use the toilet anytime he needs to. He also has access to staff facilities that are more private.

Donna, mother to Charlie, age 16, living with Crohn’s Disease

Find out more:

Check out Crohn’s & Colitis UK’s Guide for schools.

Talking to their doctors and nurses

You may have found that you don’t always have as long as you’d like to talk to your GP or the hospital specialists treating your child. To get the most out of the limited time you have during a consultation, it can be a good idea to:

  • Prepare by writing down any questions you have in advance, so you don’t forget them.
  • Be open. Don’t be worried about asking any question, even if you feel it is a small thing, chances are they’ve heard it before and can help.
  • Take a friend or relative along with you for support and help remembering any answers.
  • Keep a list of your child’s medicines and a diary of their symptoms and responses to treatment, so the facts are at your fingertips when you come to discuss them. If your child is older, they can keep their own symptom diary, or use apps like MyIBD.

Since Evie was diagnosed with Crohn’s Disease, we have developed very supportive relationships with the consultants and nurses in her IBD team. It has made a big difference for us in coming to terms with her condition, and trying to keep life as normal as possible for her.

Ruth, mother to Evie, age 11, living with Crohn’s Disease

Find out more:

Check out Crohn’s & Colitis UK’s guide to working in partnership with healthcare professionals: My Crohn’s and Colitis care.

For older children and those transitioning to adult care, have a look at the charity’s guide: Transitioning: moving to adult care.

Talking to other people

It’s totally up to you and your child whether and how much you tell friends, neighbours and relatives outside the immediate family. If you do decide to open up, here are some things to think about:

  • You may worry that some people will react badly to the news that your child has a chronic bowel disease, but negative reactions are more likely when people don’t understand the condition. If you can be open and honest, this is usually the best way to clear up any confusion or unfounded fears.
  • It can be particularly worthwhile talking to the parents of your child’s friends — once you’ve checked your child is happy with this. Other parents may, for example, be worried that your child’s condition is infectious, or that they need a special diet, but be reluctant to mention it until you do. You’ll probably find that most people are supportive once they know how they can help.
  • Children often feel less isolated if they can talk to other children in a similar situation, so it can be worth trying to make contact with other families effected by Crohn's or Colitis.

Find out more:

Meet other families by going along to one of the charity’s Family Events, or
chat, exchange tips and experiences with others Crohn’s & Colitis UK Facebook forum.

Also, check out Crohn’s & Colitis UK’s Unstoppables for stories of other children living with Crohn’s or Colitis.