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Survey reveals widespread misunderstanding of microscopic colitis and the impact on patients affected by the condition
This Microscopic Colitis Awareness Week, we’re shining a light on the widespread misunderstanding of microscopic colitis, a form of inflammatory bowel disease (IBD) and the significant impact it has on those affected by the condition.
Earlier this year, Guts UK and Falk Foundation carried out a survey to better understand patients’ experiences of microscopic colitis, from onset of symptoms and seeking diagnosis, to treatment and impact on quality of life. 185 people responded to the survey to share their experiences, which highlight the disparity in patients’ experiences and the significant challenges they face when seeking the right diagnosis, treatment, and living with microscopic colitis long-term.
Microscopic colitis is a form of inflammatory bowel disease that can develop at any time but is more common in middle age. Most people are diagnosed between the ages of 50 and 70, and it occurs more often in women. Symptoms include watery diarrhoea, bowel incontinence episodes and a frequent need to empty the bowels. A particular feature of the condition is bowel urgency during the night, leading to lack of sleep and fatigue. Many people who live with the condition need to routinely plan their work and social lives around access to toilet facilities.
Recognising microscopic colitis symptoms in primary care
The survey found that only 15% of patients with microscopic colitis will have their condition recognised by their GP and be correctly referred to hospital for further investigation. 70% of patients are being told by their GP that they are suffering from irritable bowel syndrome (IBS) instead.
Whilst most were told it was IBS, other conditions put forward as a possible diagnosis included coeliac disease, gastritis, food intolerance or bowel cancer. Patients also reported being offered a range of ineffective treatments, including anti-diarrhoeal medicine, peppermint tablets, low FODMAP diet and antibiotics.
On average, patients are visiting their GP up to five times and some for several years before being referred to secondary care, with many being given ineffective and incorrect treatment.
"Microscopic colitis is more common than people think, but still is something many GPs and other healthcare professionals may have not met or treated. We would encourage patients to seek help from their GP if they have chronic diarrhoea, especially if there is little or no pain, as pain may tend to support the diagnosis of IBS with which GPs are very familiar. GPs should consider referral to secondary care in patients with chronic diarrhoea."
Chris Probert, Clinical Trustee at Guts UK
Impact on patients’ quality of life
Patients who took part in the survey reported that, pre-diagnosis and treatment, microscopic colitis had a major impact on their quality of life in many different ways. These included an impact on their:
- Energy levels and fatigue (85%)
- Social life (85%)
- Physical health (82%)
- Mental health and wellbeing (77%)
- Daily routines and tasks (76%)
- Work life (58%)
- Intimate relationships (44%)
Despite this – and that microscopic colitis has distinct and easily recognisable symptoms – the survey clearly showed that the condition appears to be significantly misunderstood at primary care level.
The experiences described by patients in this survey mirror exactly what we see in clinical practice. Microscopic colitis is frequently misdiagnosed as IBS in primary care, leading to years of inappropriate treatment, ongoing symptoms and significant deterioration in quality of life. Chronic watery diarrhoea, urgency and nocturnal symptoms are too often normalised or attributed to functional disease, particularly in older women, rather than triggering timely referral and biopsy.
Pearl Avery, IBD Advanced Nurse Practitioner
Treatment and support in secondary care
The picture within secondary care is also concerning. A diagnosis of microscopic colitis can only be made in a hospital setting following a colonoscopy with biopsies being taken from each segment of the colon to look for evidence of the disease. However, even when patients a diagnosis of microscopic colitis, almost one in three (30%) patients in the survey did not receive the correct first line treatment to control their condition, which is oral budesonide. Furthermore, 56% of patients report not being able to access correct treatment promptly when flare ups occur.
Like other IBDs, microscopic colitis is a lifelong condition requiring significant self-management. Yet, unlike patients living with other IBDs such a Crohn’s disease and ulcerative colitis, who are automatically referred to a specialist nurse team on diagnosis, the survey showed that only 4% of microscopic colitis patients have access to such long term and vital support.
Alex’s story
Alex Ortiz, 61, began to experience symptoms of microscopic colitis in January 2022. Over the course of the next year, she visited her GP five times before she was finally referred to hospital for a colonoscopy.
I had all the classic symptoms of microscopic colitis. I was going to the toilet seven or eight times a day and in the night, I was regularly having accidents – which was extremely embarrassing - and I was exhausted most of the time.
Every time I visited my GP, she would order stool and blood tests but when they came back as negative, she seemed at a complete loss for a diagnosis. I was trying to work out by myself what was causing these awful symptoms which were affecting just about every area of my life. It was a difficult time in my life.
Finally, I insisted I was referred for further investigation. Six weeks after my colonoscopy I was given my diagnosis and put on a course of budesonide which was really effective. Suddenly I had my life back. I was normal again. After doing my own research, I know now that I did actually have very clear symptoms of microscopic colitis which are actually quite distinct from other bowel conditions. If these had been spotted by my GP, it could have meant earlier referral and treatment for me and spared me a lot of misery.
You can read Alex’s microscopic colitis story in full here.
Getting the right information
The survey also revealed a lack of good quality information and support for patients even when diagnosed. 69% of patients did not receive adequate information to support them to properly understand their condition with the majority (86%) having to turn to the internet and 29% relying on charities such as Guts UK for advice.
As the national charity for the digestive system, Guts UK is committed to helping people affected by microscopic colitis. Whether experiencing symptoms for the first time, navigating your way through medical appointments, or understanding a recent diagnosis, we can provide information and support right here on our website and through our dedicated Helpline.
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