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IBD Patient Guidance

Every IBD patient knows the challenge of making the decision to stay home sick from work or school, and the difficulty of not going to a movie or dinner because of IBD symptoms. With the spread of coronavirus (COVID-19), it has become even more challenging for patients to make decisions about navigating their daily life.

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Credible sources | Suspected/Positive COVID-19 | Medication and supplies | Health and safety

Check out our Facebook Live discussion on the SECURE-IBD Registry, an international database to monitor and report on outcomes of COVID-19 occurring in IBD patients. Watch the video below or view slides from the talk:

Video Length 00:30:03

SECURE-IBD Registry: Tracking the impact of COVID-19 on IBD patients In this video chat, Drs. Michael Kappelman and Erica Brenner from the University of North Carolina discuss the SECURE-IBD registry and what we've learned so far about the illness' impact on the IBD community.


Get information from credible sources 

The web is full of information and recommendations. Some information is written by experts, social influencers, and the media. Sorting through this information and understanding what’s being researched, approved and what is safe to use can be difficult. With the rise of this pandemic comes those who are looking to profit off the fears of the masses through promoting “treatments” or “cures” that lack evidence and may cause harm. Recently, individuals seeking to avoid SARS-COV-2 have been poisoned by use of chloroquine phosphate found in fish tank cleaner and others have been poisoned taking unprescribed chloroquine or hydrochloroquine. The CDC recently issued a warning about chloroquine phosphate and advised healthcare providers to ensure appropriate use of prescription drugs and chloroquine and hydrochloroquine. Any recommendation found on TV, on a website, or in social media should be discussed with your healthcare team. 

It’s also important to know the details your community is taking to flatten the curve. The best source of information can be found by visiting your local health department websites. The news media is providing general information but may not be providing specifics for your community. As you and your family make decisions, please visit your local health department’s website for specific guidance. Local health departments are providing guidance that pertains to local risk and precautions specific to those people living and working in the community. Some local health departments may also have alerts that you can sign up for to stay updated on any new information about your area.

Guidance for patients with COVID-19

If you or a loved one is positive for—or suspected to haveCOVID-19, there are precautions you should take to protect those living around you. Most of us are living in shared spaces—whether we are in apartments, condos or single-family homes, our family or roommates are sharing the same space. The recommendations below will help protect those sharing spaces from spreading SARS-CoV-2 to their family or roommates.

For adults that do not need assistance from a caregiver:

  • Wear a mask as often as possible. Change mask daily.
  • Isolate in one room, limiting exposure to other parts of the house or apartment as much as possible
  • Designate one bathroom for use by any person suspected or positive for COVID-19
  • If designating a bathroom isn’t an option, the CDC recommends the bathroom be cleaned and disinfected after each use by an ill person
    • If this is not possible, others in the house or apartments should wait as long as possible after use by the ill person and disinfect high touch surfaces (handle, lid, seat of the toilet, sink, etc.)
  • After toileting, flush with the toilet lid closed
  • Clean the bathroom with disinfectant after use. Wash hands and use disposable towels if possible.
  • If you have an ostomy, see our resource on ostomies and waste disposal for additional guidance 
  • Perform proper hand hygiene frequently. See healthy hygiene practices for more details  

For adults or pediatric patients that depend on a caregiver:

  • Caregiver should wear a mask as often as possible, especially when interacting with someone who may be positive for COVID-19
    • Caregiver should also wear gloves and a disposable apron if available
  • Caregiver should wear gloves when removing trash and when disinfecting any surface soiled with body fluids
  • Bathroom disinfection should occur after use by a symptomatic person
  • Caregiver should perform hand hygiene before and after wearing a mask and gloves

Medication and supplies

The CDC recommends that people have their medicine cabinets stocked with supplies and essentials during any type of natural disaster or emergency. This includes medicine such as cough syrup, cold and flu medicine, and other items that are typically available to help with the symptoms of a cold or virus. Many IBD patients are concerned about access to medications in the event of a supply shortage. The FDA is closely monitoring the medical supply chain, and there have been no shortages reported to date on medications used to treat IBD. 

Patients and caregivers are encouraged to contact their insurance company for specific policies related to testing, prescription refills and other support. For those without insurance or in need of additional insurance-related guidance, the National Association of Insurance Commissioners has compiled a comprehensive list of resources by state. Please visit:, go to “Resources” and navigate by state. You can also contact the IBD Help Center with additional questions.

Reminders for all patients

Browse a list of publications referenced by the CDC:  

This information was developed by members of the Foundation's National Scientific Advisory Committee.

Last updated May 2020