With the Centers for Disease Control and Prevention reporting that inflammatory bowel disease (IBD), including Crohn’s disease and ulcerative colitis, is on the rise, there is an urgent need for physicians to arm their patients with tools and education to manage these conditions in between appointments.

IBD already includes nearly three million people in the U.S. who are diagnosed with either ulcerative colitis or Crohn’s disease, which cause inflammation of the tissues in the digestive tract. Disease experience and severity vary between individuals, but many will have symptoms such as stomach pain, diarrhea, rectal bleeding, extreme tiredness, and weight loss. In addition, IBD patients are at high risk for complications that often lead to emergency room visits and long hospital stays to treat active disease, abscesses, and/or strictures causing obstruction.

What’s particularly challenging about IBD is that it can flare even when patients are being treated comprehensively using disease-modifying therapies. However, when patients become inured to living with the most common symptoms, they may not even recognize higher disease activity and assume they can’t feel any better. This inevitably leads to undertreatment and higher direct and indirect health care costs and utilization as physicians play “catch-up” to treat sicker patients.

The good news is that there are three major ways that physicians can guide people with IBD to track and manage their symptoms in between appointments:

1. Engage patients to track symptoms.

When we see patients in the office, we only track their disease at one moment in time, ordering blood and stool tests, imaging, or more invasive tests such as colonoscopies for data. We also ask patients to relay their disease experience since their last appointment, relying on their memory to convey how symptoms have improved or escalated. Clearly, there are going to be gaps in how we understand our patients’ real-world experience.

That’s why encouraging and teaching patients to track their disease over time and in between appointments is valuable. Wearable devices purchased by patients and computer-based platforms provided by gastroenterologists freely to patients enrolled in certain health plans are increasingly sophisticated and accurate. They use validated patient-reported outcomes measures (PROs) and AI algorithms to monitor, predict, and alert physicians when their patients require intervention.

According to a new study published in Gastroenterology, physiological data collected over time from wearable devices can help both doctors and patients course-correct ahead of IBD flares. Researchers reported that in patients (n=300) who wore devices, answered daily symptom surveys, and provided blood and stool assessments of inflammation, these supplied markers could identify increasing inflammation and even anticipate changes in disease activity up to seven weeks before flares developed.

Wearing a device isn’t the only option. Patients enrolled in a computer-interfaced IBD-monitoring platform that risk stratifies patients and performs continuous symptom checks also through PRO engagement had, in one study, 48 percent fewer emergency room visits and 78 percent fewer hospital admissions. In this study, 495 patients with IBD from three New Jersey-based medical practices were compared against a risk-matched control population of 2,695 patients not enrolled in the platform.

When physicians are alerted to oncoming flares and higher disease activity more quickly, they can intervene more quickly to reduce the risk for serious complications.

2. Educate on diet and food diaries.

Crucial and standard for physicians is educating their patients about the connection between their diet and disease experience. While research continues to probe why diet plays a role in IBD, there are studies reporting that patients are having an overreaction of their immune system to common bacteria in food as a trigger for IBD flare-ups.

The American Gastroenterology Association provides guidance, suggesting that IBD patients follow a Mediterranean diet that includes fresh fruits and vegetables, monounsaturated fats, complex carbohydrates, and lean proteins. Simultaneously, patients need to avoid ultra-processed foods, added sugar, and salt. Notably, there is also no evidence that one of the most commonly used therapeutic diets, called the specific carbohydrate diet and comprised of specific allowed and not allowed fruits, vegetables, sugars, and grains, is better than the traditional Mediterranean diet as treatment for Crohn’s disease with mild to moderate symptoms.

Unfortunately, despite this advice, there is no one definitive diet shown to decrease the rate of flares in all adults with IBD. Some people are highly reactive to dairy and fatty acids, while others feel better when they avoid certain grains or fibrous materials. Unfortunately, there is some trial and error required to land on appropriate foods that also provide adequate nutrition.

A food diary is recommended to help patients and physicians analyze what might be contributing to IBD symptoms. Notably, this may be another opportunity for technological support, as there are many phone apps specifically designed to track a person’s daily diet easily and at very low or no cost.

3. Provide a checklist for accountability.

The reality is that the onus of IBD maintenance falls on the shoulders of patients who must take medications as prescribed (and manage the refill process), maintain a healthy diet, and monitor their experience of disease to be mindful of symptoms escalation. With that in mind, gastroenterologists can help patients work with the rest of their physician team to ensure that their whole self is monitored by providing an evidence-based health screening checklist. Created by the Crohn’s and Colitis Foundation, the health maintenance checklist specifically covers how often IBD patients should be screened for different cancers, with special attention to skin cancer and cervical dysplasia/cancer, given these are disease-specific and IBD-treatment-specific issues. Other important assessments include screening for anxiety and depression, which has a three- to fourfold higher risk in IBD patients, smoking, nutrition/vitamin intake, bone health, and more.

Particularly important for people living with IBD are vaccines because they are at an increased risk of some vaccine-preventable diseases, which is further exacerbated when they are being treated with immunosuppressive therapies. Physicians are in a trusted position to explain that vaccines are safe and effective.

While many people will be up to date on their vaccines and require only seasonal ones like the flu and COVID-19 shot, those and other needed vaccines are easily found and administered by a local pharmacist. This means there is no need to wait for their specialist appointment.

It is essential that patients get vaccines, if able, before starting medications that can suppress their immune system to mount the best response. Ideal for immunity is to be tested for hepatitis A, B, varicella, and MMR to guide whether a patient needs to have these. It is also essential that if live vaccines are being considered, the clinician and patient are aware that these are contraindicated if the patient is already on an immunosuppressant; otherwise, it is encouraged, though with specific parameters before starting an immunosuppressant.

It can be difficult to manage ulcerative colitis or Crohn’s disease because patients are burdened by painful symptoms that can limit their quality of life, including their ability to work or go to school, participate in social occasions, or engage in the activities of daily living with family and friends. Physicians, particularly gastroenterologists, can help their patients by focusing on patient education and giving them tools to help manage their disease in between appointments.

Shamita B. Shah is a gastroenterologist.