Inflammatory bowel disease (IBD), an umbrella term encompassing Crohn’s disease and ulcerative colitis, affects approximately 3 million Americans, with most diagnoses occurring before the age of 35. This chronic condition causes inflammation in the gastrointestinal (GI) tract. However, a significant challenge in IBD management is its often-delayed diagnosis, as symptoms can closely mimic those of other conditions, making early identification difficult.

Research indicates that IBD may be preceded by a "substantial symptomatic period," with symptoms manifesting 10 years or even more before standard diagnostic tests like endoscopy and biopsy can confirm the disease. A 2023 study highlighted this, revealing that individuals presenting with IBD-specific symptoms—such as abdominal pain, diarrhea, or rectal bleeding—who initially receive a normal endoscopy still face an elevated risk of developing IBD over the subsequent 30 years. Specifically, the study, which analyzed GI biopsy reports from Sweden’s national health database between 1965 and 2016, found that 2.4% of people with a normal lower GI biopsy later developed IBD, compared to just 0.4% of those without, amounting to one additional IBD diagnosis per 37 people within 30 years of a normal biopsy. Dr. Jiangwei Sun, lead author of the study, emphasized that clinicians should recognize this increased future risk even after normal endoscopic findings.

The common symptoms of IBD include persistent diarrhea, abdominal pain, rectal bleeding or bloody stools, weight loss, and fatigue. While Crohn’s disease can affect any part of the GI tract from mouth to anus, ulcerative colitis typically targets the colon and rectum. Despite these differences in affected areas, the symptoms can often overlap.

The insidious nature of IBD significantly contributes to diagnostic delays. Dr. Stefan Holubar, a colorectal surgeon at Cleveland Clinic, explains that symptoms often progress slowly, leading patients to adapt over time until the bowel damage is so extensive that the diagnosis becomes obvious. Dr. Jeffrey Berinstein, a gastroenterologist at Michigan Medicine, though not involved in the study, underscored that while the risk of later developing IBD after a normal biopsy is increased, the relative number of affected individuals remains low.

Given these challenges, experts advise a proactive approach to care. Dr. Holubar suggests that individuals at higher risk for IBD experiencing mild symptoms should establish care with an IBD specialist. This allows for long-term monitoring, aiming for earlier diagnosis and intervention to prevent inflammation-driven bowel damage. Dr. Berinstein adds that physicians should maintain a low threshold for repeating endoscopies if a patient’s symptoms worsen or fail to respond to non-IBD therapies, stressing that a negative biopsy doesn't definitively rule out the disease.

While IBD is a lifelong condition, significant advancements in medicine and a deeper understanding of the disease have led to more targeted and effective therapies. As Dr. Holubar notes, there are now many treatment options available to control inflammation and enable patients to lead lives as normal as possible, transforming IBD into a largely manageable disease.