Caring for someone with IBD

How to support someone with IBD

After your child or loved one has been diagnosed with a chronic condition like inflammatory bowel disease (IBD), there are a range of emotions both you and they may experience along your journey to ownership. Denial, bargaining, anger, sadness, distress, guilt and shame are all common reactions that even a carer can go through too. It can feel like a rollercoaster when you or the loved one you are caring for is accepting one day and sad the next. At times you may also feel a sense of helplessness, or question the support you are giving the person with IBD.

If an adult with IBD is not taking good care of themself, they may be thrown into consideration of the consequences of their actions. As they take steps towards looking after themself, they may begin to experience the benefits of staying healthy and sticking to treatment offers. They may come to accept that while there are some things they can’t control, they can choose to eat well, take their medications as prescribed and surround themselves with a support network, that includes you. Unlike adults, children may not experience this until they are old enough to understand actions and consequences. 

Encouraging your loved one to take ownership of their life means you are helping them to make informed and shared decisions about their health as well. Ownership develops through self-discovery, experiencing first-hand how their treatment plan works towards keeping them well, and the realisation that there are things they can do that can impact how they are doing, both good and bad. For some, this may be a gradual process, others have a moment of realisation, where they may even change the way they view themselves and their place in the world. This section of the website has lots of links to resources to help people with IBD and their carers, get the information they need to be empowered to take ownership of their condition.

What are the rights and responsibilities of a carer? Walking with carers in NSW from NSW Health is a guide for carers, developed by carers.

Parents/carers may also want to provide the school with resources. Support from the school could help a child with IBD thrive in the classroom and minimise the impact of their condition on their school experience. Crohn’s and Colitis Australia has put together a guide for primary, secondary, and tertiary educators, and the Canadian Digestive Health Foundation has also prepared a teacher resource.