Immediately, as news of the seriousness of the COVID-19 pandemic set in, Jessica Caron made sure to get all her routine blood work done and touch base with her doctor.
This was 2 months ago, when she and her family decided to shelter in place in their home in New Hampshire.
The realities of sheltering at home during the COVID-19 outbreak has upended daily life and forced many otherwise healthy people to embrace a level of vigilance about their health they never have before.
But for someone like Caron, who was formally diagnosed with Crohn’s disease about a decade ago at age 21, living with a chronic illness has made her hyperaware about what she needs to do to manage her health during an uncertain time.
“I thought, ‘We’re going to want to know what my status is’ before sheltering at home,” Caron told Healthline. “I recently changed medications, and we were going to do a scope, but as with anything nonemergency, that has been canceled right now. I’m feeling fairly well. Have been dealing with minor flares and symptoms, but I’m at home, and I’ve been able to manage my health really well here.”
Caron has been an outspoken health advocate for people living with inflammatory bowel disease (IBD), an umbrella term for a group of conditions that include Crohn’s and ulcerative colitis.
She has a popular blog — Chronically Jess — that highlights her experiences with Crohn’s, especially her life as a mom raising two young sons while managing a chronic illness.
She says that once COVID-19 emerged, she received messages on her social channels from other members of the IBD community who were concerned about whether they’re at increased risk for the virus and had fears over managing their symptoms during a stressful, unsettling time.
“At the start, I was trying to dispel myths and get in front of myths and fears and help people still feel connected,” she said of her engagement with her social followers.
“Problems with your health can make you feel like you’re going out of control and leave you vulnerable to the ‘snake oil salesman,’ and can leave you vulnerable to things that aren’t substantiated,” she said.
There are many people in Caron’s situation, who are living through COVID-19 while managing their IBD.
For instance, the Centers for Disease Control and Prevention (CDC) estimate that 3 millionTrusted Source U.S. adults received an IBD diagnosis in 2015. That’s a lot of people regulating an illness on top of concerns over a new one.
There’s no universal set of experiences for people with IBD; it’s highly variable.
There’s no cure for IBD right now, but it can be managed through medications, anti-inflammatory diets and, of course, regular contact with one’s doctor.
Dr. Jessica Philpott, PhD, a gastroenterologist at Cleveland Clinic, says people with IBD, as with the general population, are concerned about COVID-19 given how little is known about the disease.
“How can I stay safe?” is the question she says she hears the most from her patients.
Beyond this, Philpott hears concerns over whether their medications, many of which are immunosuppressants to regulate the body’s immune response to IBD, put them at more risk for COVID-19 complications.
“If a person has IBD but is on no medication, then they are not at any greater risk for COVID-19 than anybody else,” Philpott told Healthline.
She says the data publicly available right now doesn’t show people using IBD medications to be at greater risk for the worst symptoms of COVID-19.
This is backed up by a recent Q&A from UChicago Medicine gastroenterologist Dr. David T. Rubin, who writes that “we don’t think of our IBD patients at baseline as being immune suppressed… we turn down the overactive immune system just enough so their body takes over, and we minimize their risk for infections.”
Dr. Bo Shen, professor of medicine and director of the Interventional IBD Center at Columbia University Irving Medical Center, says he and his colleagues have been working on a series of studies looking at how the current pandemic is affecting people with IBD and their medical providers.
Their multiple papers are currently at different stages of review and publication.
He echoes Philpott in that there seems to be no definitive link to show people with IBD at greater risk for COVID-19, but says other concerns might emerge at this time.
For instance, the United States’ cultural aversion to embracing protective face masks for the general public as well as access to enough personal protective equipment (PPE) for essential workers aren’t IBD-centric issues, but they’re still great concerns to this population.
People living with IBD need regular checkups with their doctors and regular testing. Shen says this current era of lockdown complicates that.
In a place like New York City — the current epicenter of the new coronavirus in the United States — Shen says IBD patients might be squeamish about heading into healthcare centers for their regular treatments.
He told Healthline that telemedicine is a regular recourse for initial discussions with your doctor.
Philpott stresses that “we are still definitely here, even if people are sheltering in place. Healthcare providers are still here and available.”