JASMA

If you live with inflammatory bowel disease (IBD)Crohn’s disease or ulcerative colitisyou’ve probably had at least one moment where you stared at a new symptom and thought,
“Is this my gut being dramatic… or is this a virus doing a cameo?” COVID-19 made that guessing game louder, messier, and way less fun.

The good news: we now have solid data (including large real-world registries) and practical guidance from gastroenterology and public health organizations.
The better news: most people with IBD can protect themselves well without putting life on pause or panic-texting their GI doctor at 2 a.m. (Okaymaybe less panic, more texting.)

What the science says about risk (and what it doesn’t)

Does having IBD automatically mean higher COVID-19 risk?

Not automatically. Having IBD by itself doesn’t consistently show a dramatically higher risk of getting infected or developing severe COVID-19.
What tends to matter more are the same things that matter for everyone: age, heart/lung/kidney disease, diabetes, obesity, smoking history,
and overall immune function.

For people with IBD, two extra “risk dials” are especially important: how active your IBD is and which medications you’re using.
In other words, the question isn’t just “Do you have IBD?” It’s “Is your IBD controlled, and are you on steroid-heavy treatment right now?”

The biggest risk signal in IBD: systemic steroids

Across multiple analyses, systemic corticosteroids (like prednisone) have been linked to worse COVID-19 outcomes in IBD populations.
Steroids can be lifesavers during flares, but long courses or higher doses are generally a red flag for infection risk.

That doesn’t mean “never use steroids.” It means “use them strategically”:
aim for the lowest effective dose, shortest practical course, and a clear plan to transition to steroid-sparing therapy when possible.

Biologics and other IBD meds: the nuance you deserve

Here’s the part where the internet tends to yell, “IMMUNOSUPPRESSED!” and then sprint away.
Reality is more nuanced:

• Anti-TNF biologics (like infliximab or adalimumab) have not consistently shown the same “bad outcome” signal as systemic steroids,
  especially as monotherapy.
• Combination therapy (for example, anti-TNF plus a thiopurine) has shown higher risk signals in some registry analyses compared with anti-TNF alone.
• Thiopurines (like azathioprine/6-MP) and certain small molecules can carry a higher infection-risk profile than some gut-selective options,
  though individual risk varies a lot.
• Gut-selective therapies (like vedolizumab) and some other biologics are often considered lower systemic immune impact than broad immunosuppressants.

The practical takeaway: staying in remission matters. Uncontrolled inflammation, repeated ER visits, dehydration,
and steroid dependence can be more dangerous than stable maintenance therapy.

Infusion centers and clinic visits: “Is it safe to go?”

Skipping infusions “just in case” can backfire if it triggers a flare that requires steroids or hospitalization.
Many infusion centers have strong infection-control routines (screening, masking policies when indicated, cleaning, spacing).
If you’re worried, call ahead and ask what protocols are currently in placethen decide with facts, not fear.

Vaccines, boosters, and IBD: what to know without spiraling

Are COVID-19 vaccines recommended for people with IBD?

In general, yesespecially for those who are older, have other health conditions, or take immune-modifying medications.
Major GI organizations have strongly supported COVID-19 vaccination for IBD patients, and public health guidance continues to prioritize people at higher risk.

Will my IBD meds make vaccines “not work”?

“Not work” is too dramatic. Some therapiesespecially anti-TNF agentscan be associated with lower antibody levels
after vaccination compared with the general population. But protection is not only antibodies. Your immune system also has cellular responses,
and updated vaccines can still reduce the risk of severe disease.

Translation: even if your immune response is blunted, vaccination can still shift the odds in your favor.
It may also influence how aggressively your clinicians recommend boosters based on risk level.

Which schedule should I follow?

COVID-19 vaccine recommendations change as variants and vaccine formulations evolve.
In the U.S., the CDC publishes season-based schedules and separate guidance for people who are moderately or severely immunocompromised.

If you’re on certain immunosuppressive therapies, you may qualify for an immunocompromised schedule (which can include additional doses).
The exact category can be medication- and dose-specificso ask your gastroenterologist or pharmacist which schedule fits your situation.

Should I stop IBD meds around the time of vaccination?

For most maintenance therapies, stopping meds just to get vaccinated is not routinely recommended,
because disease flare risk is real. Sometimes clinicians coordinate timing (for example, scheduling a vaccine when you feel well,
or not on high-dose steroids if it can be avoided). That’s a personalized decisionask your IBD team what they prefer for your regimen.

If you get COVID-19: a calm, practical action plan

Step 1: Test early and don’t “wait it out” if you’re high-risk

If you develop symptoms (or have a high-risk exposure), test promptly. If positive and you’re at higher risk for progression,
early treatment options may be availableand they work best when started quickly.

Step 2: Ask about antiviral treatmentand drug interactions

Outpatient antivirals (such as nirmatrelvir/ritonavir) may be appropriate for many high-risk patients, but drug interactions can be a big deal.
This is where your pharmacist becomes an MVP. Provide a full medication list, including supplements.

If you can’t take a particular antiviral due to interactions or kidney function, clinicians may consider alternatives (depending on current guidance and availability).
Don’t self-triage based on one social media post from 2022. COVID-19 treatment recommendations have evolved.

Step 3: What about IBD meds during infection?

Don’t stop everything on your own. Some GI guidance has suggested temporarily holding certain immunomodulators
and sometimes delaying biologic dosing during active symptomatic COVID-19, then restarting after recovery.
The safest approach is individualized and depends on:

• How sick you are with COVID-19
• Your IBD history (stable vs hard-to-control)
• The specific medication class and dosing schedule
• Your risk of flare if therapy is interrupted

If you’re mildly ill and your IBD is historically difficult to control, your GI team may lean toward shorter interruptions (or none at all).
If you’re quite ill, holding certain therapies longer may be appropriate. This is exactly why it’s worth calling your IBD office:
they’ve been through this decision tree many times.

Step 4: Watch the IBD-specific “gotchas”

• Dehydration from fever/diarrhea can worsen fatigue, dizziness, and kidney strain.
• GI symptoms can happen with COVID-19, and they can mimic an IBD flare.
• NSAIDs (like ibuprofen) are not ideal for many IBD patientsask what pain/fever options are best for you.
• Red flags: trouble breathing, chest pain, confusion, dehydration you can’t correct at home,
  severe abdominal pain, persistent high fever, or blood lossseek urgent care.

Managing an IBD flare during the COVID-19 era

Don’t assume every flare needs steroids

Steroids still have a role, but because systemic steroids are linked with worse infection outcomes, many clinicians aim for steroid-sparing strategies when possible:
adjusting maintenance therapy, using targeted treatments, and treating inflammation early before it escalates.

Know the difference: flare vs infection vs “my gut hates me today”

COVID-19 can cause diarrhea, nausea, abdominal discomfort, appetite changes, and fatiguesymptoms that overlap with IBD.
Some practical clues that can help (not diagnose, but guide next steps):

• Fever, sore throat, cough, body aches tilt toward infectionespecially with new household exposure.
• Blood in stool, nighttime urgency, and progressive GI symptoms over days to weeks can tilt toward IBD activity.
• Fecal calprotectin (if your team uses it) can help distinguish inflammation from functional symptoms.

If you’re unsure, it’s reasonable to test for COVID-19 (and other infections) early, especially before changing IBD meds.

Telehealth is your frienduse it strategically

If you’re mildly ill, telehealth can help you quickly review symptoms, medication timing, and whether you need labs, stool tests,
or imaging. Many IBD practices can order testing without an in-person visit, which keeps you safer and speeds up decisions.

Prevention playbook: small habits, big payoff

Vaccination is the foundation; layering helps

Think of risk reduction like Swiss cheese: no single layer is perfect, but stacked layers reduce holes lining up.
Helpful layers can include:

• Staying up-to-date with recommended COVID-19 vaccines for your risk group
• Improving ventilation (open windows, HEPA filters in small rooms)
• Masking in crowded indoor spaces during surges or if you’re on high-risk meds
• Testing before gatherings if someone is symptomatic
• Keeping a “what if I get sick?” plan (doctor contact, med list, pharmacy info)

Travel tips for IBD + COVID-19 realities

• Pack meds in carry-on with a few extra days’ supply.
• Bring tests if you’ll be far from pharmacies or clinics.
• Know urgent care options near your destination, especially if you’re prone to dehydration.
• Plan infusion timing around travel when possible, and ask your clinic what to do if you get sick away from home.

Long COVID, fatigue, and the “Is it my IBD?” question

Overlap is real

Long COVID can include fatigue, brain fog, shortness of breath, sleep problems, and GI symptoms. IBD can also bring fatigue, anemia, nutrient deficiencies,
and systemic inflammation. That overlap can make recovery feel confusing.

What helps you sort it out

• Basic labs (CBC, iron studies, B12, vitamin D) if fatigue lingers
• Review of disease activity markers (CRP, fecal calprotectin if used)
• Medication review (some treatments can contribute to fatigue or sleep disruption)
• A gentle, paced return to activity (avoid boom-and-bust cycles)

If symptoms persist, ask your clinician about a structured evaluation plan. “Let’s see how you feel in three months” is not a planit’s a shrug in sentence form.

Quick checklist: IBD-friendly COVID-19 advice you can actually use

• Stay in remissionit’s protective in more ways than one.
• Avoid prolonged systemic steroids when safer alternatives exist.
• Keep vaccines current based on CDC schedules and your immunocompromised status.
• Test early if symptomatic or exposed, especially if you’re high-risk.
• Ask early about antiviralstime matters, and so do drug interactions.
• Don’t stop IBD meds abruptly without your GI team’s input.
• Have a plan: med list, pharmacy, clinician contacts, and what symptoms mean “urgent care now.”

Experiences from the real world: what people with IBD commonly report (and what you can learn from it)

Data and guidelines are essentialbut lived experience fills in the day-to-day details. Below are patterns many people with IBD describe
when navigating COVID-19. These aren’t “one-size-fits-all” stories; think of them as practical snapshots that may help you feel less alone
and more prepared.

1) “Was that a vaccine side effect… or a flare?”

A common experience after vaccination is a short burst of fatigue, achiness, mild fever, or a day of “meh.” For someone with IBD,
that can feel uncomfortably similar to early flare warning signs. Many patients describe a familiar mental loop:
“If I ignore this and it’s a flare, I’ll regret it. If I treat it like a flare and it’s not, I’ll overreact.”

What helps: tracking timing and pattern. Vaccine side effects often peak within 24–48 hours and improve quickly.
Flare symptoms tend to build or persist (especially urgency, blood, and nighttime symptoms).
Some people keep a simple “two-day rule”: if symptoms are still escalating after two daysor if blood appearsmessage the GI team.
It’s not perfect, but it keeps you from catastrophizing every ache while still catching real inflammation early.

2) Infusion-day anxiety: “This is either responsible health care or a horror movie plot”

Many people on infusions report that the anxiety is sometimes worse than the visit itself.
They imagine the waiting room as a viral obstacle course, when in reality the center is usually structured, screened,
and staffed by people who really don’t want anyone getting sick on their watch.

What helps: calling ahead for specifics (“Do you screen symptoms at check-in?” “How many patients at a time?” “What’s your ventilation like?”),
choosing appointment times that feel less crowded, and wearing a high-quality mask during surges if that reduces stress.
A surprising number of patients say the biggest relief was simply replacing vague fear with concrete info.

3) Getting COVID-19 and feeling guiltylike you “failed” at prevention

People with chronic illness often carry an unfair emotional burden: if they get infected, they blame themselves.
Many IBD patients describe guilt (“I shouldn’t have gone to that dinner”) mixed with frustration (“I did everything right!”).
Here’s the reality: prevention reduces risk; it doesn’t create an invisibility cloak.

What helps: focusing on action rather than blame. Patients report feeling more in control when they shift quickly to:
(1) testing and confirming, (2) contacting a clinician early if high-risk, (3) reviewing medications and interactions,
and (4) staying hydrated and monitoring symptoms. That action-first mindset also reduces stress, which is never a bad thing for a gut prone to protest.

4) “Paxlovid sounds greatuntil the pharmacist asks about interactions”

Many high-risk patients describe a moment of hope when they hear about antiviralsfollowed by confusion when the conversation turns to drug interactions.
That confusion is normal. Ritonavir-boosted regimens can interact with multiple medications, and sorting it out is a professional sport.

What helps: having an updated medication list ready (including supplements), using one pharmacy when possible,
and asking a direct question: “If I qualify for treatment, what’s the safest option with my current meds?”
Several patients report that the “magic move” was contacting the pharmacist early the same day symptoms started.
Faster review = faster decisions = better outcomes.

5) The flare-after-illness phenomenon: “My immune system held a meeting and decided to be petty”

Some people report an IBD flare in the weeks following viral illnessCOVID-19 or otherwise.
It’s not always clear whether the infection triggers inflammation directly, whether medications were held,
or whether stress, sleep disruption, and diet changes contribute. But the experience is common enough that many patients now plan for it.

What helps: a post-illness check-in plan. Patients often do better when they proactively schedule labs or stool markers
if symptoms linger, rather than waiting until they’re in full flare territory.
Others focus on basics that are easy to neglect during illness: iron-rich food as appetite returns, consistent hydration,
gentle movement, and sleep routines. Not glamorous, but neither is a flare, so we’ll take the boring win.

Bottom line

If you have IBD, your goal isn’t to eliminate all COVID-19 risk forever (that’s not a real product, and if it were, it would cost too much).
Your goal is to reduce risk intelligently while keeping your disease controlled.
That usually means staying on effective maintenance therapy, minimizing systemic steroids when possible, staying current with vaccines appropriate to your risk,
testing early when symptomatic, and seeking timely treatment guidance if you’re high-risk.

Most importantly: you do not have to navigate this alone. Your GI team has protocols, your pharmacist has interaction tools,
and you have more options now than at any earlier point in the pandemic.