News and Opinion

Gut feelings - researching life with Crohn's & Colitis

How can clinical researchers improve quality of life and long-term wellbeing for patients with Crohn’s Disease and Ulcerative Colitis?

Inflammatory Bowel Diseases like Crohn’s Disease and Ulcerative Colitis are estimated to affect almost 1% of people worldwide, with most diagnosed as young adults.

Both are non-communicable diseases – long term conditions that can’t be passed on between people – and are characterised by periods of flare up and remission. In Colitis, parts of the large bowel become swollen, ulcerated and inflamed, whereas Crohn’s can cause inflammation in various different parts of the intestinal tract. Symptoms vary from patient to patient, but might include stomach pain, tiredness and blood in stools.

Crohn’s and Colitis patients are often faced with unknowns. It’s not currently understood what causes either disease – though they are likely to be triggered by some combination of genetics, a faulty immune response, natural microorganisms living in the gut, or environmental factors. While most people with these conditions can live long and largely normal lives, there’s no cure for either condition, so clinical studies working towards better quality of life are particularly important.

Diagnosis and access to treatment

Both conditions are tricky to pinpoint because of the variation in how symptoms present themselves between patients and because these signs often mimic those of other conditions. There’s no single test for either – the road to diagnosis can be long and uncomfortable, and procedures like colonoscopies can be worrying for patients.

New diagnostic procedures are on the horizon, though – the ColoCap study is being run by York Teaching Hospital, where patients instead swallow a 3cm camera in smooth plastic casing, which should naturally come back out the other end 5 hours later. This study was registered in October 2024 with ISRCTN, the UK’s study registry, and is currently looking for adult patients with suspected colitis or colorectal cancer to take part.

Diagnoses of these conditions currently often take over a year from symptoms first appearing, partly because patients are understandably worried about the tests involved. Research into a quicker diagnostic process is of huge value to patients because it means a smoother route to being able to access treatment and manage the condition.

The charity Crohn’s & Colitis UK are currently funding the RAPID study, redesigning a faster pathway to diagnosis. This will take place at the Royal Devon and Exeter NHS Hospital, with the first half of the study looking at how long it takes to get diagnosed and what stops people seeking help earlier, and with the second half offering a stool test kit directly to people with symptoms

Quality of life and wellbeing

One of the targets within the United Nation’s Sustainable Development Goals centres around non-communicable diseases and promoting wellbeing.

Ties between mental and physical health are strong, and life with Crohn’s or Colitis can take a toll on patients. Evidence suggests there is a relationship between the onset of Inflammatory Bowel Diseases and the presence of depression and anxiety in patients, particularly women. Researchers have recommended patients with these conditions should be screened for depression and anxiety, and referred to mental health professionals for evaluation and treatment.

Doctors at the Bambino Gesù Children's Hospital in Rome set out to establish whether psychotherapy can also help young people keep their Crohn’s and Colitis in remission, alongside medication. Their results, published in the Journal of Crohn’s and Colitis, found that eight weeks of therapy did effectively increase remission rates, even though hospitalisation rate and medication adherence did not improve.

Quality of life and understanding comorbidities

The second arm of the UN’s Sustainable Development target is to reduce premature mortality from non-communicable diseases by one third before 2030. While with adequate care, Colitis and Crohn’s are usually life-long conditions rather than life-threatening conditions, serious complications and comorbidities can be fatal.

In another Research Communities post last year, Professor Daniel C. Baumgart explained how Crohn’s Disease patients face higher risks of genitourinary, dermatological and respiratory conditions, whereas Ulcerative Colitis is more commonly associated with digestive, endocrine and thromboembolic complications. The AI network analysis techniques developed in his npj Digital Medicine article to uncover these links allow for more precise, personalised medical care, as scientists will be able to recognise and predict links between different conditions.

Recent studies into comorbidities of Crohn’s and Colitis have found that one in twenty people with the conditions also have an undiagnosed inflammatory lower back condition, and that several heart conditions could also be associated with them.

Understanding the links between these conditions not only ensures that life expectancies are increased, but also that more of those years can be spent in good health.

Towards better treatment options 

Current treatment options for moderate to severe cases of Colitis and Crohn’s centre around steroids, immunosuppressants and surgery to remove damaged parts of the bowel, all of which can have substantial impacts on day-to-day lifestyles. As Tao Zuo and Ziyu Huang explained in a Research Communities post earlier this month, IBD patients deserve better options. 

Those better treatments take many shapes, from the highly evolved – personalised medicine using blood biomarkers and protein inhibitors reducing inflammation, to the slightly absurd – a glass of red wine every day for a month.  

But the key is providing options, and remembering that there won’t and shouldn’t be a one-size-fits-all solution for these highly varied diseases. 

This blog was written as part of February’s upcoming SDG 3 Newsletter on Non-Communicable Diseases. To read the full newsletter as soon as it lands, follow Alice Coe and Virginia Mercer on Research Communities.