A Few Medical Professionals Recognize MC As Disabling

By Wayne Persky

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As anyone living with microscopic colitis (MC) can attest,although the disease is often dismissed as a minor gastrointestinal issue, the reality is far more serious. A 2019 qualitative study published in The Journal of Clinical Nursing offers powerful insights into how deeply MC affects the daily lives of patients (Pihl Lesnovska, Münch, and Hjortswang, 2019).1 The lead author is an RN, and the other two authors are Mds who also hold a PhD. Through in-depth interviews, the study verifies how life with MC is not only physically taxing, but also emotionally and socially disruptive.

The study’s central theme,“struggling with an invisible, disabling disease”, describes what most of us have been through — the frustrating paradox of MC. Patients experience symptoms that are severe and life-altering, yet outwardly they appear healthy. This invisibility contributes to misunderstandings from employers, family, and healthcare providers, often leaving patients feeling isolated or invalidated.​

This was a small study.

Through qualitative interviews with 15 individuals diagnosed with MC, researchers identified five key areas where the disease significantly disrupts life:​

1. Physical experience of bowel dysfunction

Patients described a relentless pattern of chronic or recurrent watery diarrhea, sometimes occurring multiple times per day. The urgency and frequency of bowel movements are difficult to control and often unpredictable. This can result in fecal incontinence, a deeply distressing symptom that undermines a person’s sense of dignity and autonomy.

2. Associated symptoms affecting quality of life

Beyond diarrhea, patients reported abdominal pain, fatigue, bloating, and sleep disturbances. These symptoms make it difficult to participate in normal daily activities. Fatigue, in particular, was noted as overwhelming and sometimes indistinguishable from the kind seen in other chronic inflammatory conditions.

3. Impact on everyday life

The consequences of MC extend far beyond the bathroom. Patients described having to plan their lives around toilet access, leading to reduced social engagement, work limitations, and avoidance of travel. Some felt compelled to stay close to home for fear of losing bowel control in public. This isolation contributes to emotional distress and loss of independence.

4. Disease-related worry

Participants expressed ongoing anxiety about the future, including fear of symptom escalation or progression to another disease. Uncertainty about effective treatment, flare unpredictability, and concerns about the long-term impact of chronic inflammation weighed heavily on their minds.

5. Strategies for managing daily life

Despite the challenges, patients adopted a variety of adaptive strategies to cope. These included strict dietary adjustments, carrying emergency supplies, mapping out bathrooms, and modifying work and social routines. However, many found that even with extensive lifestyle changes, their symptoms remained difficult to control.

The need for greater recognition and support.

The authors point out that this study highlights a critical gap in how microscopic colitis is perceived and managed. Although classified as a form of inflammatory bowel disease, MC is often under-recognized due to the absence of visible symptoms or positive imaging findings. As a result, patients feel dismissed or minimized, which exacerbates the psychological burden of the disease.​

The authors call for improved clinical awareness, more targeted quality of life assessments, and individualized care plans that acknowledge both the physical and emotional toll of MC.

Conclusion:

MC is far more than a "mild" GI condition. As most of us have learned in the school of hard knocks, it can be a disabling, life-altering illness that demands constant vigilance and adaptation. This study adds credence to our claims, and gives voice to those who often suffer in silence, by updating the medical literature to correct a longstanding misconception by most medical professionals. Greater empathy, research, and tailored care are urgently needed to improve outcomes for people living with MC, according to the authors.

This study was published over 6 years ago. Has anyone noticed any improvement in the empathy shown by their gastroenterologist, or any improvement in their treatment since then? I'd be surprised if anyone has.

Reference

1. Pihl Lesnovska, K., Münch, A., and Hjortswang, H. (2019). Microscopic colitis: Struggling with an invisible, disabling disease. The Journal of Clinical Nursing, 28(19-20). pp 3408-3415. Retrieved from https://pmc.ncbi.nlm.nih.gov/articles/PMC7328780/