Telling a child or young person about a diagnosis of Crohn’s should be done in a sensitive and positive way.

Younger children may be confused or afraid, so it is important to allay fears. A good approach is to explain things simply and to emphasise that most people can manage their Crohn’s disease with treatment.

Parents will be closely involved in making informed decisions about their child’s treatment and the management of their disease. The disease should be explained to siblings. Siblings and family members will be an important source of support for those with Crohn’s disease.

School is a very public place for the child with Crohn’s and it is hard to find any privacy even in the toilets. Some children may express reluctance about going to school for this reason so they need extra support and reassurance.

Teachers should be informed about the child’s disease and some of the child’s emotional and physical needs explained. Even though the child may be in remission, it is important to discuss the issue.

It is useful to raise the question of the risk of flares causing potential absences for hospital stays, affecting performance and the impact of stress such as at exam time on the child’s health.

Going to the toilet should be permitted without delay, as the need to go will be urgent.
So a strategy is needed for the teacher to give permission to the child to leave without any delay and without drawing attention to themselves. This will help to avoid subsequent embarrassment among peers.

Parents of young children with Crohn’s disease will be the key people in helping them manage their condition. Listening closely to a child who is explaining their symptoms or pain and having empathy is important in supporting the child and also in relaying information to health professionals about the child’s wellbeing.

Involving the child in making decisions about their treatment and diet is important.

Going to parties can be a concern for some children as special dietary considerations may be an issue. Immediate access to a toilet must be emphasised.  A child who is nervous of going to parties or other social occasions for this reason will need reassurance.

The teenager with Crohn’s disease may have problems related to this stage of life, which impact on their condition.

They may be going through a stage where communication is difficult anyway.  Their self-esteem and confidence may be shaky through the teen period.

In those who may already have a poor body image, being diagnosed with Crohn’s disease may make this worse.

The symptoms they have may be too intimate and difficult to discuss and they may not be able to articulate how they feel to anyone. It is not unusual for teenagers with Crohn’s disease to become down or agitated about their illness. They may feel isolated. Lack of energy and lethargy may be confused with laziness.

Teenagers may also engage in risk-taking behaviour that may make their symptoms worse. Drinking too much alcohol or taking drugs and even not sleeping enough can all adversely affect how they feel.

They may not take their disease seriously, feel they are not ill, and may not take their prescribed medications. This may cause a considerable set-back to management of their Crohn’s. Normal adolescent rebellion against ‘authority’ can include rebelling against taking medication, and this needs to be managed carefully.

The young person will decide themselves whether they want to tell their friends about their Crohn’s disease or not. A parent should respect their child’s decision in this.

It may be useful for the young person or parents to discuss their concerns with health professionals and others in a similar situation, as this can be a difficult period in the management of Crohn’s disease.