By R. Balfour Sartor, MD., as told to Stacia Friedman

My Crohn’s disease symptoms started in sixth grade when my abdominal pain was misdiagnosed as appendicitis. Inflammatory bowel diseases, which include Crohn’s disease and ulcerative colitis, are frequently misdiagnosed.

Patients often mistake IBD symptoms -- diarrhea, abdominal pain, weight loss -- for a GI bug. Rather than seeking medical attention, they self-medicate with over-the-counter remedies such as Pepto Bismol, probiotics, and Imodium. Another cause of delay is due to primary care doctors not considering the diagnosis or not seeking proper diagnostic testing, such as a CT scan and colonoscopy.

I knew I would become a doctor when I was still in high school. My friends called me “Dr. Balfour” because I was always patching up injured dogs and cats.

Diagnosis and Bad Advice

In my case, I did not receive an accurate diagnosis for 10 years. I was a senior premed student at Washington-Lee University and had already been accepted into Baylor College of Medicine when I was diagnosed with Crohn’s disease. Because of this diagnosis, I was advised not to go to medical school. I not only went to medical school, but I also got married. Fortunately, my wife has always been extremely supportive.

During my internship, I was hospitalized for 6 weeks due to a flare-up of Crohn’s. My primary therapy was total parenteral nutrition (TPN), receiving all food intravenously.

During this time, I intensely reflected on my career. Previously, I had gravitated toward GI surgery, but I wasn’t sure I could do 3-hour surgical procedures. I decided that gastroenterology was a better path for me.

I was frustrated with the available medical care for Crohn’s, which was limited to steroids and surgery. That’s when I understood that a cure and better treatments required a deeper understanding of the causes of the disease.

Wanting to Understand

The prevailing theory at the time was that Crohn’s was an autoimmune process. I developed the hypothesis that the gut bacteria might drive that immune response. I wanted to understand which of the complex bacteria are most involved.

I have been conducting Crohn’s disease and ulcerative colitis research since 1979. It’s been a 40-plus-year odyssey exploring the same theory.

My current research seeks to identify which gut bacteria are the primary activators of the overly aggressive immune response and which bacteria can suppress these activities. In a normal host, these aggressive bacteria are balanced by protective bacteria that don’t induce inflammation. That protection is not provided in Crohn’s and IBD patients.

My research asks: How can you manipulate the system so you can decrease aggressive bacteria and stimulate good gut bacteria? Which bacteria signals initiate inflammation? Which are protective?

We know that genetics plays a role, but these diseases are not predestined. For example, if one identical twin has Crohn’s, the other twin will have a 40% chance of developing the disease. But also a 60% chance of not getting it.

Antibiotics are another trigger. They disrupt the gut’s bacterial balance, killing off the good bacteria and increasing the bad. This is especially true for frequent exposure to antibiotics during childhood.

Diet is the final frontier. I am currently doing research on how diet impacts bacterial profiles and functions. The dietary components of Western diets, including preservatives, high animal protein, and high-sulfur compounds, are very detrimental. High-sugar, low-fiber processed food makes symptoms worse; food that is freshly prepared, high-fiber, and low-fat helps. Personally, I avoid red meat and eat a large amount of fiber and fruit.

Sharing My Diagnosis

When I was first diagnosed, I didn’t want anyone to know. But when I took the position at UNC, I decided to share my diagnosis with colleagues and patients.

My experience as a Crohn’s patient has allowed me to have far greater insights and empathy than most doctors. Before I advise a patient on a course of treatment, I ask myself: Would I take the advice I am about to give?

Having Crohn’s, I am better able to relate to patients, especially those who are newly diagnosed and think their world is coming to an end. I advise them to remain optimistic based on my own experience.

We’ve come a long way with Crohn’s and ulcerative colitis treatment and have made progress to better understand the mechanism of the disease and immune responses. A whole pipeline of new therapies are available. The chances of full recovery are quite high.

R. Balfour Sartor, MD, is the Lorimer W. Midget distinguished professor of medicine, microbiology, and immunology, Division of Gastroenterology and Hepatology, at the University of North Carolina at Chapel Hill and co-director of the UNC Center for Gastrointestinal Biology and Disease.