IBD symptoms can appear years before clinical diagnosis, a study shows
Inflammatory bowel disease (IBD) can have a “significant symptomatic period” before clinical diagnosis, new research shows. Symptoms of IBD – abdominal pain, diarrhea, rectal bleeding – can occur 10 years or more before endoscopy and biopsy can identify the disease. People with IBD symptoms may still be at risk of being diagnosed with the disease even after a normal biopsy. Martin-dm/Getty Images Symptoms of inflammatory bowel disease (IBD) can appear years before the disease is identified through typical diagnostic tests. New research published in the journal PLOS Medicine shows that IBD requires a “significant symptomatic period” before clinical diagnosis...

IBD symptoms can appear years before clinical diagnosis, a study shows
Inflammatory bowel disease (IBD) can have a “significant symptomatic period” before clinical diagnosis, new research shows. Symptoms of IBD – abdominal pain, diarrhea, rectal bleeding – can occur 10 years or more before endoscopy and biopsy can identify the disease. People with IBD symptoms may still be at risk of being diagnosed with the disease even after a normal biopsy.
Martin-dm/Getty Images
Symptoms of inflammatory bowel disease (IBD) may appear years before the disease is identified through typical diagnostic tests.
New research results published in the journalPLOS medicineshows that IBD can have a “significant symptomatic period” before clinical diagnosis; Symptoms may occur 10 years or more before endoscopy and biopsy can identify the disease.
In addition, people who have IBD-specific symptoms (abdominal pain, diarrhea, or rectal bleeding) but have a normal endoscopy still have an increased risk of IBD over the next 30 years.
“Clinicians should be aware that patients with GI symptoms requiring endoscopy are at increased risk of IBD in the future, even if their endoscopies were normal,” lead study author Jiangwei Sun, PhD, a postdoctoral fellow in the Department of Epidemiology and Biostatistics at Karolinska Institutet in Sweden, tellsHealth.
IBD — an umbrella term used to describe Crohn's disease and ulcerative colitis — affects about 3 million Americans, most of whom are diagnosed before age 35. The disease causes chronic inflammation in the gastrointestinal (GI) tract, but sometimes early warning signs are indistinguishable from other diseases, making early diagnosis of IBD difficult.
What are the most common symptoms of IBD?
The main types of IBD – Crohn's disease and ulcerative colitis – can affect different parts of the body. In Crohn's disease, the entire gastrointestinal tract (from the mouth to the anus) can be affected; Ulcerative colitis is typically limited to the colon and rectum.
However, the two types of IBD can have similar symptoms, including:
Persistent diarrheaStomach painRectal bleeding/bloody stoolsWeight lossFatigue
A normal biopsy may not protect against a future diagnosis
For the study, published in February, Sun and his team evaluated GI biopsy reports from Sweden's national health database. All were taken between 1965 and 2016. The researchers specifically looked at people with a GI biopsy of the normal mucosa - or lining of the GI tract that was free of clinically diagnosed disease.
In total, the team identified nearly 460,000 people who had a normal lower or upper GI biopsy (200,495 lower GI biopsy and 257,192 upper GI biopsy) and nearly half a million of their siblings who did not have a GI biopsy. They also included 2 million people from the Swedish general population register who also had not undergone a GI biopsy during this period.
The median follow-up time was 10 years, with some even reaching 30 years after a GI biopsy. They found that 2.4% of people who had a normal lower GI biopsy later developed IBD, compared to 0.4% of those who did not. People with a normal upper GI biopsy also had a higher risk of later developing Crohn's disease or ulcerative colitis.
However, Jeffrey Berinstein, MD, a gastroenterologist and clinical instructor at Michigan Medicine who was not involved in the study, emphasized that despite the increased risk, the relative number of people affected is still small.
"Although the relative increase in those who received biopsies compared to those who did not receive biopsies, the absolute number is less than 10% undergoing endoscopy. It should not deter people from getting a biopsy," he said.
The difference between 2.4% and 0.4% corresponded to one additional IBD diagnosis for every 37 people within 30 years of a normal biopsy.
11 things not to say to someone with Crohn's disease or ulcerative colitis
A disease that is difficult to detect and diagnose
The most common symptoms of IBD are abdominal pain, diarrhea, changes in bowel habits, or rectal bleeding, according to Sun. However, some of these symptoms can also occur with other more common medical conditions, such as: B. Irritable bowel syndrome (IBS) or hemorrhoids, which can make IBD difficult to diagnose.
It is often not clear that a patient likely has IBD and needs appropriate diagnostic testing until the disease progresses and causes obvious blood in the stool, anemia, or weight loss.
Doctors often describe IBD as insidious because the symptoms progress slowly and patients often adapt to the symptoms over time, "until they have so much intestinal damage that the diagnosis is then obvious," said Dr. Stefan Holubar, a colorectal surgeon, chief of the Division of IBD Surgery and director of research in the Division of Colorectal Surgery at Cleveland Clinic, who was not involved in the new study.
"Those who are at higher risk for IBD and have mild symptoms should ... be seen by an IBD specialist so that the doctor can see the patient over time, with the goal of making the diagnosis earlier and starting treatment earlier to prevent inflammation caused intestinal damage," said Dr. Holubar.
Berinstein says not every patient will need a follow-up endoscopy, but doctors should have a low threshold for repeating the procedures if a patient's symptoms worsen or they don't respond to non-IBD therapies.
“We need to watch these patients a little more closely and be aware that symptoms and a negative biopsy do not necessarily rule this out and not be afraid to revisit if symptoms do not improve with non-IBD therapy.” said Dr. Berlinstein.
Although IBD is a lifelong disease that requires near-constant maintenance and regular checkups, it is largely a manageable disease. Advances in medicine as well as experts' understanding of IBD have created today the "Golden Age" for IBD treatments, said Dr. Holubar – and new and more targeted therapies emerge every year.
“We now have many options in our medication bags for IBD,” said Dr. Holubar, “to control inflammation and allow people to live as normal a life as possible.”