3 steps to support your child with IBD through tough times

1. Acceptance

When you’re a parent, the most important thing about your children is their health. And the last thing you want on your mind is to see them unwell and in pain.

IBD (inflammatory bowel disease, also known as ulcerative colitis or Crohn’s disease) is a life-long condition – it isn’t preventable and it isn’t anyone’s fault. It’s important to acknowledge this so the next two steps will be easier.

Talking with other parents in a similar situation may be a means to come to grips with your child’s condition – you can find support groups around your area through the Crohn’s & Colitis Australia website.

2. Encouragement & reassurance

When children approach adolescence or adulthood, they’re growing physically and emotionally, and some may be less prepared to deal with the physical and emotional impact of IBD. As a parent, you may never know exactly what they are going through, so it’s always important to try and put your feet in their shoes.

IBD can impair nutrient absorption and, as a result, may have an impact on their growing bodies. It can also get tough during a flare-up, as they may feel angry and depressed. When and wherever possible, you should encourage them to participate in everyday activities and not let IBD own their lives.

Let’s face it, we’ve all pretended to be sick back in our school days, but there will be times when your child needs to take time off school. It would be best to respect their decision when it comes to this – which is why being knowledgeable about IBD and having good communication within the family is important.

If you’re worried that he/she could be falling behind on work, talk to the class teacher about the possibility of home tuition or online study. Sudden school absence could be indicative of a flare-up and prompt a more proactive approach to manage the situation.

Encourage your child to make the most of the opportunity for exercise during remission.

Developing your child’s responsibility could allow ownership of IBD. For example, putting him/her in charge of taking the right medications on time can help develop their confidence and independence.

A relapse can be all it takes to go from being well and happy to miserable and depressed. But it’s very important to reassure them that the situation is only temporary.

You should consider not making IBD the focus within the family, so rather than focus on what your child cannot do, focus on what he/she can do. Re-plan family outings, have backup plans rather than pointing the finger – this might be applicable to siblings who think they are missing out on fun activities.

Comfort any fears or concerns that may arise during tough times and encourage openness within the family to talk about these sensitive issues – after all, family’s family.

3. Support

For some, parental instincts often mean being overly protective (and you may not know it), especially if you have a child with IBD. 

These days, children are becoming independent earlier (or they might like to think that they are more independent) and having an over-concerned parent hovering over their shoulder may not be the healthiest of relationships. 

If you have a couple of children, consider their feelings and ensure they also get quality parents’ time – an often overlooked aspect for a healthy growing family.

No one knows for sure why IBD develops in children, so being knowledgeable about IBD is important, and together with your love and support you can be there when your child goes through the ups and downs of IBD.

If the school your child attends have student counsellors (or similar), make sure they are aware of your child’s condition, should any emergency popup. At the same time, let your child know that they can approach their teachers should they feel something isn’t quite right. If parents or teachers see emotional or distress signs, it may be wise to intervene early.

A good relationship with your child’s paediatric gastroenterologist and clinical team are important because they are often the first point of contact for any issues and are also great sources of information.

Living with a chronic condition is quite different to what it was a decade earlier. With IBD awareness campaigns (like Own your IBD – Have you got the guts?), more and more people (i.e. school teachers, parents of your child’s friends etc.) are aware of the physical and emotional impacts of IBD. So it’s not surprising to see empathy and support from other people.

Although IBD is a life-long condition, some children may only experience mild symptoms, so there’s no reason to assume the worst case scenario. Your child’s clinical team will be in the best position to manage the condition. If IBD is managed well, most children can lead relatively normal lives and their future prospects like career, relationships and family should not be any different to someone without IBD.

Letting others know about your child’s condition is a decision best left for them. However, do encourage your child to tell close friends, as they can be more understanding if they know what’s going on – a life-long condition will demand some much-needed support from life-long friends.