Living with Crohn's disease: a patient perspective

Victoria Morton | 16th November 2016

What is it like to live with a chronic disease in your 20s? Never knowing when your disease will flare up, what the symptoms will be, or how severely you’ll suffer from them. On top of all this, little is known about your condition so there’s a lack of publicly available information. So, how do you deal with this?

In this article, Account Executive Victoria Morton explores what it’s like to live with Crohn’s disease as a young person and investigate what’s being done to tackle the gaps in treatment options for patients.

Overview of Inflammatory Bowel Disease (IBD) and Crohn’s disease

Not many people know exactly what Crohn’s disease is or how it’s caused. Crohn’s disease is a form of Inflammatory Bowel Disease (IBD), which causes inflammation of the digestive system or gut. It affects approximately 1.3 million people worldwide. Once considered a rare disease in young people, it is now known to be one of the most important chronic diseases affecting children and adolescents. Although Crohn’s disease can start at any age, those diagnosed are commonly teenagers and young adults who are in the prime of life. On top of this, younger people are more likely to suffer from severe symptoms, and as the severity of symptoms worsen, the number and complexity of these symptoms also increases.

When you think of Crohn’s disease, you may think of rushing to the toilet, but the reality is very different. Patients can experience a variety of symptoms depending on where in the gut the disease is active, ranging from mild to severe. It’s also a very individual condition. The most common symptoms are not only diarrhoea, but also tiredness and fatigue, abdominal pain, mouth ulcers, anaemia, loss of appetite, and weight loss. In addition, patients with severe symptoms also suffer an increased range of features of their condition, such as intestinal inflammation. Symptoms are unpredictable and affect everyday living, significantly impacting on quality of life. Not something you want to be dealing with when you’re trying to study for exams or training for that big rugby game.

Living with Crohn’s: challenges in diagnosis

Our understanding of the causes of Crohn’s disease is improving. There isn’t one definitive cause of Crohn’s disease, and evidence suggests that a combination of inappropriate immune response, genetic susceptibility, and environmental risk factors (such as smoking and stress) may contribute to disease development (Gyires, 2014).

Despite progression in our knowledge of this condition, there is still a relatively poor understanding of this complex disease area, which inherently makes diagnosis even more difficult. Diagnosis can take up to three years due to delayed presentation of symptoms and misdiagnosis. This increases the time before patients can start managing their symptoms and begin to feel better.

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