Overview

Crohn's disease is one of the two main forms of inflammatory bowel disease, where parts of the gut become inflamed and swollen.¹ The exact cause of Crohn’s disease is not yet understood but research suggests the immune system triggers an over-reaction to normal gut bacteria, damaging healthy cells.² Symptoms of Crohn’s disease vary from person to person and depend on which part of the gut is affected. Whilst there is currently no cure for Crohn’s disease, various treatments can help to improve quality of life. They reduce or resolve symptoms for long periods of time - also known as remission.³    

Crohn’s disease can affect people at any age and is becoming increasingly more common in children. Childhood and adolescence are periods of significant emotional, social, and physical change, marked by puberty, and are also often the stages when symptoms of Crohn’s disease first present.⁴ Living with a long-term health condition can be difficult for anyone, but it can be particularly hard for children and their families. This article seeks to explore the psychological, social and environmental challenges for children with Crohn’s disease, and their families.

Understanding Crohn’s Disease in Children

Crohn’s disease causes inflammation and ulcers along the gastrointestinal tract, which can occur anywhere in the gut, from the mouth to the anus, although it’s most common in the small bowel and colon.¹ Individuals often experience the type and severity of Crohn’s disease symptoms differently, but the most common symptoms seen in children are:⁴

• Stomach pain
• Diarrhoea - sometimes with blood and/or mucus
• Sickness and vomiting
• Unexplained weight loss
• Tiredness
• Mouth ulcers and lip swelling in children with oral Crohn's  

Crohn’s disease can be difficult to diagnose in children, as it often mimics symptoms of other less serious conditions, such as stomach viruses, infections and food intolerances. The symptoms also come and go, with periods of good health in between.² The chronic and unpredictable nature of Crohn’s disease causes individuals to often fluctuate between ‘flare ups’ (where symptoms present suddenly) and remission (when symptoms reduce or disappear). 

Crohn’s is a lifelong condition with no cure, however different treatments such as medicine and surgery can address specific symptoms and increase the amount of time in remission.³

Psychological Impact on Children

As with many gut-related autoimmune diseases, the brain-gut axis plays a crucial role. This two way connection means signals are sent from the brain to the gut and vice versa, so the gut can influence mood and thinking, while psychological factors can in turn affect gut function.⁵ This helps to explain why rates of depression and anxiety are higher among individuals with Crohn’s disease, as their inflamed gut is sending stress signals to the brain.^4,5 

Although there is a biological predisposition, young people with Crohn’s disease are also vulnerable to depression as a result of the condition’s symptoms affecting quality of life. Persistent abdominal pain, which can occur even during periods of remission, is frequently reported and is strongly associated with depression in children.⁶ Additionally, around 65% of children and adolescents with Crohn’s disease experience significant sleep issues,⁷ further impacting their mental health. Research indicates that 25% of young people with Crohn’s disease report symptoms of depression,⁷ and this rate is higher than young people with other long-term diseases.⁸ 

Treatment for Crohn’s disease often consists of medicine to reduce inflammation in the colon, which can help to ease stomach cramps and diarrhoea. More severe symptoms may require antibiotics, immunosuppressants, or steroids - which can also sometimes increase depressive symptoms.⁷ Often, targeted medicines called biologics are administered, either as an injection or through a drip.^1,2 Sometimes surgery is necessary to enable individuals to enter remission, with around 20% of people with Crohn’s disease having surgery to remove part of their bowel.⁸      

Vaccinations, medications and surgeries are naturally anxiety inducing experiences for children, but for children with Crohn’s disease these experiences are often heightened due to their condition. Children with Crohn’s disease have to manage frequent hospital visits, bloodwork, complicated medications and vaccinations alongside the existing challenges of their medical symptoms, causing them more stress and psychological difficulty than other children their age.¹⁰  

Social Impact on Children

Children who are diagnosed with Crohn’s disease at a younger age are better able to cope with the lifestyle changes necessary to manage this condition, as their diagnosis can be incorporated into their sense of identity earlier.⁴ However for adolescents, a diagnosis of Crohn’s disease at this time can be challenging, as they are already navigating their self-identity.⁴ 

As diagnosis can take a while, by the time children and young people receive their diagnosis of Crohn’s disease, it is common for them to experience growth difficulties, malnutrition and delayed puberty, which can impact their lives in many ways.¹¹ These physical differences often affect young people’s self-image and confidence, when comparing themselves with their peers who are developing faster than them. Research shows that anxiety and social withdrawal is common in young people with Crohn’s disease who also reported delayed development,¹² with social withdrawal impacting various areas of their lives. Some children and young people with Crohn’s disease and delayed development reported difficulties with attending school regularly, and felt unable to participate in sports activities.⁷

Both children and young people may feel embarrassment around certain aspects of their symptoms, e.g. flatulence, diarrhea, or bowel incontinence ⁴ as they can be hard to manage, especially during social situations or at school. Some young people with severe Crohn’s disease undergo surgery to remove part of their bowel, and may need a stoma which means their bowel movements would be collected in a stoma bag. This can often cause shock for children and young people at first, as their body looks and feels different and they need to adapt to new toileting behaviours. 

Childhood and adolescence are times where social acceptance and peer understanding can be difficult, as other children might not know anything about Crohn’s disease. It is therefore important for young people with Crohn’s disease to have a supportive network around them when managing so many different aspects of their condition. 

Impact on Families

When a child is diagnosed with a long-term illness with no cure, it can also be really difficult for their family. Crohn’s disease affects children and young people in many ways, which can emotionally impact family members and parents, who might be concerned about their child. Caring for a child with this chronic illness can put a lot of pressure on parents and carers, as they need to administer medications, attend hospital appointments and help manage the symptoms of Crohn’s disease, all whilst maintaining their own responsibilities e.g. employment, domestic chores, parenting other children.¹⁴ This causes a significant change to the whole family’s lifestyle.

There is a strong genetic component to Crohn’s disease and someone’s risk of developing the condition increases for those with a diagnosed relative, which could cause anxiety for family members, especially if they’ve experienced first hand how difficult managing the condition can be.¹⁵ However, this doesn’t necessarily mean that the disease runs in families, as people who have a family history of Crohn’s disease do not always develop it themselves.¹⁵ Given that many relatives do not actually experience Crohn’s disease themselves, this can make it difficult for families to properly understand the impact of condition and be supportive.

Family functioning and social support are important protective factors for children and young people living with this condition,⁴ which can put a lot of pressure on their relatives and parents, particularly if they are worried about their child. Positive family functioning is very important for effective management of Crohn’s disease, as family conflict can lead to disease management difficulties for adolescents with chronic illnesses.¹⁶ Siblings of children with Crohn’s disease may struggle with feelings of anger or jealousy, as their parents may spend less time with them, due to their sibling’s demanding caring responsibilities. Coping with a child’s diagnosis of Crohn’s disease can therefore be extremely difficult for parents and carers, causing stress, guilt and frustration, particularly when their child is in pain.¹⁵

Summary

Crohn's disease is a form of inflammatory bowel disease, causing inflammation and ulcers anywhere along the gastrointestinal tract, though most commonly seen in the small bowel and colon. Symptoms vary but usually include stomach pain, diarrhoea, and fatigue. While its exact cause is unknown, researchers suggest it’s likely to be an immune system overreaction to normal gut bacteria. Though currently incurable, treatments ranging from medications to surgery can reduce symptoms and achieve periods of remission.

Diagnoses of Crohn’s disease are becoming increasingly common in childhood and adolescence, which are already times of emotional and physical development, impacting self-image and identity. The brain-gut axis contributes to higher rates of depression and anxiety in children with Crohn's, exacerbated by chronic abdominal pain and sleep issues. Frequent medical appointments and interventions such as vaccinations and surgeries can also contribute to the psychological impact of managing Crohn’s disease.

Some symptoms of Crohn’s disease such as flatulence and diarrhoea can make socialising difficult for children and young people. Growth and puberty delays also impact a child’s self-perception and confidence, often affecting their school attendance and participation in sports activities with peers. Families experience stress, guilt and frustration when managing a child’s chronic illness, particularly when they are in pain. Research reveals the importance of family functioning in effective disease management, further highlighting the impact of Crohn’s disease - not just for the diagnosed child, but for their family as well.