- An estimated
3 millionadults received an inflammatory bowel disease (IBD) diagnosis in the United States in 2015.
- Many of those who are living with IBD are concerned about potential complications of managing the disease during the COVID-19 outbreak.
- If a person has IBD but isn’t using medication, then they’re not at any greater risk for COVID-19 than anybody else.
- 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.
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
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.”
Philpott says one general recommendation for people with IBD right now is to try to stock up on a 90-day supply of needed prescriptions if possible.
She also suggests stocking up on necessary foods you might need for your specific, recommended diet to treat your IBD. If you live in an area that hasn’t been hard-hit by COVID-19 yet, it could be a smart thing to do.
Another complication of this time: What if you start experiencing symptoms that you think could be Crohn’s or ulcerative colitis but haven’t received a formal diagnosis yet?
“As with any new medical symptoms, a person would need to seek help. Could start with a telehealth visit, and that visit would allow [the] provider to get some idea of how the patient is doing,” Philpott said.
Then a person would have to come in for lab work and to assess possible symptoms of IBD before moving forward. She says her area hasn’t been a hotspot of COVID-19, so there’s plenty of space and resources for IBD testing.
Shen says COVID-19 could present barriers to people living in areas hard-hit by the pandemic.
“For an IBD diagnosis, you need an endoscopy, a biopsy. Now, you have three barriers. First one is you need to see a doctor, second is you need an endoscopy, third is a pathologist needs to be available to read your slides,” Shen said.
“It can be challenging (in a COVID-19 hotspot), because what if your doctor is not available right away to carry out these needed procedures?” he said.
As always, both Philpott and Shen stress getting in touch with your doctor right away to discuss any symptoms of IBD or COVID-19, and move forward with their recommendations about what’s best for your care moving forward.
Having the vetted information from experts like Philpott and Shen is crucial now more than ever, Caron adds.
She explains that she’s seen misinformation spring up around COVID-19 and its impacts on people with IBD.
Caron doesn’t fault everyday people looking for information, adding that it’s “human nature to want to grab on to whatever information you can find when feeling out of control and hopeless.”
“For a long time, I’ve trired to battle with misinformation on the internet and tried to support my fellow peers with IBD through times when they feel uncertain or scared or alone,” she said.
It’s partially what has spurred her to be such a vocal advocate and educator on all things IBD.
She says people with IBD are, in a way, best prepared to handle this sudden, unprecedented pandemic.
“I was prepared for understanding what it was like to think about health in a chronic and long-term way. Lots of people are trying to think about ‘how do I think about COVID-19 and how do I coexist with COVID for the next 12 to 16 months as we try to figure out vaccinations and try to get back to life as we knew it?’ And I’ve been used to having to think like that,” Caron said.
Caron remembers that when she had her worst Crohn’s flares, she knew it wouldn’t go away quickly, that it could last for weeks on end.
Like Crohn’s, COVID-19 is completely out of one’s control. She says it’s OK to feel “a little hopeless” right now.
“I really, really resonate with those feelings and appreciate those feelings, and luckily, having managed this disease for 12 years, I know what it is like to get on the other side,” Caron said, who has so far been in good health during this current crisis.
“Maybe I can see the light at the end of the tunnel even if it is really, really far away, because I’ve had to go through that before,” she said.
What’s her recommendation for coping with this based on her experiences with Crohn’s disease?
Caron remembers missing out on parties and holidays, and being forced to isolate with her own thoughts as she would put all her energy into managing her health.
Caron says we have to be patient, and to be responsive to our own health and the health of the greater community.
“You can’t rush it,” she said. “Things will go back to normal at some point.”
“I remember lying in bed and wishing there was a magic pill, but there isn’t right now. The truth for COVID is, someday, there is going to be, we will have a vaccine. For Crohn’s right now, there isn’t,” Caron added.
“I get that feeling. I get that wish. I wish there was something that would be that miracle that would get us back to normal. But the thing with COVID… we have to hold on tight and be smart about it,” she said.