As reported in EMJ Reviews, the world is on alert, being told to wash their hands and keep distance amidst the COVID-19 pandemic. However, patients with inflammatory bowel disease (IBD) are concerned that their medicine to treat IBD makes them at more susceptible to infection and contracting COVID-19. In order to get a better idea about how patients with IBD’s are feeling, the European Federation of Crohn’s & Ulcerative Colitis Associations (EFCCA) conducted a global survey to find out how IBD patients feel about COVID-19 and how it interacts with their disease.

Inflammatory bowel disease is the umbrella term for conditions causing inflammation in the digestive tract, including Crohn’s disease and ulcerative colitis. This causes patients to develop symptoms like diarrhea, fever, tiredness, cramping, pain in the abdomen, bloody stool, loss of appetite, weight loss, and more. The symptoms vary from patient to patient in severity and location. Some patients experience the symptoms in waves, followed by periods of remission.

The EFCCA worked with the Head of the IBD Center at the Humanitas Research Hospital in Milan, Italy to identify the most common questions patients asked their physicians during the pandemic. They began gathering data in the early days of the pandemic beginning March 30th and shared the results at the UEG Week Virtual on October 11th. The researchers gathered information from 3,815 IBD patients across 51 nations to discover how they were feeling about their health.

They found that the majority of patients were worried about how their medication could increase their risk for contracting the virus (63%). Still, that did not persuade patients to change their IBD treatment regime— 88% of patients said they would continue the IBD medications despite COVID risks. They found 85% of patients were worried about contracting the disease, and 87% were concerned about infecting others.

While they didn’t find that IBD patients were more likely to get the disease, they did find that they were extra concerned. In response, they also asked patients what helped them feel better. They found 42% of patients said their patient groups gave them the most peace of mind, 27% reported relatives helped, 14% answered international authorities, 7% reported friends, 6% physician consultations, and 4% reported psychologists were the most calming factor.

In response, the doctors suggest that the patient organizations that provide a community space have a key role right now. More than ever, patients need a space to come together from afar.