COVID-19 Resources For People Living With IBD

Coronavirus (COVID-19) Resources For People With IBD

People with inflammatory bowel disease (IBD, Crohn’s disease, ulcerative colitis, or indeterminate colitis) are understandably concerned about the novel coronavirus, and the disease it causes, COVID-19, spreading in their community. People who have certain medical conditions and/or are receiving immunosuppressive medications may be at a greater risk of complications for COVID-19. There are some guidelines put out specifically for people with IBD that can help in making decisions during this time. On this page you will find trusted and verifiable resources that help you as you make choices regarding travel, medications, and everyday life during the pandemic.


June 23, 2020 Update

There are now 1,511 reported cases of COVID-19 worldwide in people with IBD. There have been 50 deaths entered into the database: 38 of these were in people over the age of 60. The hospitalization rate is 29%, with 5% needing the ICU, 5% needing a ventilator, and a 3% death rate. See the update from the SECURE-IBD Registry.*

The International Organization For the Study of Inflammatory Bowel Disease met on Friday, March 20th. They continue to meet every week. Some of the recommendations from this group were reported by David Rubin, MD of the University of Chicago via Twitter (see original Tweets or view the thread here) and included:

  • Having IBD is not a risk factor for infection with the novel coronavirus (SARS-CoV2) or for developing the disease COVID-19
  • Active inflammation MAY increase the risk of infection
  • Patients should stay on their therapies in order to stay in remission
  • Diarrhea is a common symptom in patients with COVID-19 and in the small number of people with IBD who have developed COVID-19
  • Infusion centers with an appropriate screening protocol are OK
  • Elective switching from IV to injection therapy is not recommended at this time
  • The safety of home infusions is uncertain. (An infected home infusion nurse could be less safe than an experienced and secure infusion center.)
  • It’s recommended to delay/postpone all non-essential endoscopic procedures
  • Prednisone is not recommended, as this drug may increase risk of infection
  • Tapering prednisone safely is generally advised, but especially if a patient has been exposed to the novel coronavirus (SARS-CoV2) or tests positive

General Guidelines for People With IBD

  1. Keep taking your medications. Many recommendations advise that people with IBD not stop their medications. Most IBD medications do not leave the body in the short-term and stopping medication could lead to a risk of an IBD flare-up. Talk to your physicians about your specific needs.†
  2. Risk of infection may not be increased. Receiving immunosuppressant medications does not increase the risk of contracting SARS-CoV2.‡
  3. Practice social distancing. Stay home as much as possible, especially avoiding large crowds in places with no ventilation, practice good hygiene and cleaning methods (see below), and follow other recommendations from your local public health officials.
  4. Use telehealth services. Ask your IBD physicians about conducting follow-up visits using telemedicine (such as over the phone or a video chat).
  5. Reschedule elective procedures. Consider postponing elective colonoscopy or other procedures.§
  6. Call ahead if you are sick. If you get sick with COVID-19—like symptoms (see articles below for more information) call your physicians to get instructions. If you experience difficulty breathing or shortness of breath, persistent pain or pressure in the chest, new confusion or the inability to arouse, or bluish lips or face, seek medical help immediately.||
  7. Contact the Crohn’s and Colitis Foundation’s IBD Help Center for questions, or see links to international Crohn’s and colitis patient advocacy groups below.

*Brenner EJ, Ungaro RC, Colombel JF, Kappelman MD. SECURE-IBD Database Public Data Update. Accessed on 05/03/20.
†Crohn’s and Colitis Foundation. IBD patient guidance. 12 March 2020.
‡Crohn’s and Colitis UK. Coronavirus (COVID-19) advice. 13 March 2020.
§Mao R, Liang J, Shen J, et al. Implications of COVID-19 for patients with pre-existing digestive diseases. Lancet Gastroenterol Hepatol. Published online March 11, 2020. doi:10.1016/S2468-1253(20)30076-5
||Centers for Disease Control and Prevention. People at risk for serious illness from COVID-19.  National Center for Immunization and Respiratory Diseases (NCIRD). 10 March 2020.

IBD-Specific COVID-19 Information for Patients

Boston Medical Center Crohn’s & Colitis Program

This handy chart from the Boston Medical Center Crohn’s and Colitis Program gives guidance on how IBD medications might be changed in various scenarios in regards to COVID-19. Check with your doctors about any questions you have about your own treatment.

International Organization For the Study of Inflammatory Bowel Disease (IOIBD)

The IOIBD has created a page for people with IBD that covers transmission, a comparison to influenza (the flu), and recommendations for people with IBD. It is updated as new information becomes available.

The Crohn’s and Colitis Foundation

The largest IBD patient advocacy group in the U.S. has also created a resource for people with IBD to access. This page includes symptoms of COVID-19, testing information, general recommendations, as well as advice for adults with IBD and caregivers of pediatric patients with IBD.

Crohn’s and Colitis UK

The IBD patient advocacy group in the UK is also recommending many of the same measures as its counterpart in the United States. Their updates include information about how to get in touch with the National Health Service in various circumstances, a link the Foreign & Commonwealth Office for guidance about travel, and information about their events which have been cancelled or postponed.

Crohn’s and Colitis Canada / Crohn et Colite Canada

The advocacy group for people with IBD in Canada includes a list of recommendations on how to institute social distancing, how to proceed in regards to clinic visits and tests for IBD, and available testing for COVID-19. In addition, Crohn’s and Colitis Canada (CCC) is holding webinars regarding COVID-19 and IBD, the first of which will be on March 19, 2020 at 8PM EST.

Coronavirus and IBD Reporting Registry

There are now hundreds of reported cases of COVID-19 in people who also live with IBD. If you or someone you know with IBD are diagnosed with COVID-19, the University of North Carolina at Chapel Hill is asking that you enter into their registry. It is HIPAA compliant and will take approximately 5 minutes. This is an important development that will help people living with IBD for years to come as we cope with this novel disease.

Got some time on your hands? Listen to episodes of About IBD, the podcast made especially for people with IBD.
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General COVID-19 Information

Centers for Disease Control and Prevention (CDC)

For people who are otherwise healthy, chances are the COVID-19 may not lead to serious complications. However, for older adults and people with IBD, diabetes, heart disease, lung disease, or other serious conditions, there could be a risk of complications. For people in these groups, the Centers for Disease Control and Prevention (CDC) has put together some guidance on how to handle travel and medications, and what to do if you become sick.

Coronavirus (COVID-19) and the Flu: Similarities and Differences

Unverified reports about the symptoms of COVID-19 are circulating around social media and elsewhere. Verywell Health has put together extensive and helpful information comparing the symptoms of COVID-19 and the flu. This page takes the latest information from research coming out of China into account, which many other sources are not reporting. 

How to Talk to Your Kids About Coronavirus (COVID-19)

Schools across the country are closing and it is presenting new challenges for children, parents, educators, and extended family. This article from Verywell Health gives several tips on how to talk to your children about COVID-19, including the facts that will be most important for them to understand in order to calm their fears.

How to Cope With Anxiety About Coronavirus (COVID-19)

Even if you are not overly worried about yourself or close family members, the disruption in everyday routines is going to cause stress. We can not get rid of our stress altogether, so it is important to manage it and this article draws on past outbreaks and pandemics to put the current situation into perspective.

COVID-19 Information for Clinicians

Joint GI Society Message

In a show of solidarity, the American Gastroenterological Association (AGA), the American Association for the Study of Liver Disease (AASLD), the American College of Gastroenterology (ACG), and the American Society for Gastrointestinal Endoscopy (ASGE) have issued guidelines for care providers. The advice to give to patients includes this: “Patients on immunosuppressive drugs for IBD and autoimmune hepatitis should continue taking their medications. The risk of disease flare outweighs the chance of contracting coronavirus. These patients should also follow CDC guidelines for at-risk groups by avoiding crowds and limiting travel.”

Crohn’s and Colitis Foundation

Information for healthcare providers about being proactive regarding coronavirus (COVID-19) and IBD-specific recommendations. This also includes links to recent journal publications (some of which are also included below).

COVID-19 European Crohn’s and Colitis Organization Taskforce

Information for clinicians on how to manage a variety of obstacles during the COVID-19 pandemic, including answers to questions about switching therapies, isolation in IBD patients, and initiating therapy for a flare-up.

Research about COVID-19 and Digestive Disease

Journal Article: Implications of COVID-19 for patients with pre-existing digestive diseases
The Lancet Gastroenterology and Hepatology

Editor’s Summary: There is not good evidence about how COVID-19 might affect people with IBD or other digestive conditions. This study seeks to shed some light on what gastroenterologists might see if their patients become infected. The authors note that one study shows that people who live with chronic illness are more likely to have poorer outcomes after becoming ill with COVID-19. Of 1099 people diagnosed with COVID-19 included in this study, 23% had one other type of illness, and some of those included hypertension, diabetes coronary heart disease, and hepatitis B. These patients had blood tests that showed abnormal liver function levels and that severe cases of COVID-19 were more likely to have liver abnormalities. Patients who had cancer and COVID-19 were also more likely to have complications (this includes colorectal cancer).

Guidelines for patients with IBD from China include postponing surgery and endoscopy when it is elective, and using personal protection if it’s necessary to visit a clinic after coming down with a fever. Other recommendations regarding specific medications from the People’s Republic of China can be found here.

  • Read: Mao R, Liang J, Shen J, et al. Implications of COVID-19 for patients with pre-existing digestive diseases. Lancet Gastroenterol Hepatol. Published online March 11, 2020. doi:10.1016/S2468-1253(20)30076-5

Journal Articles:
Evidence for gastrointestinal infection of SARS-CoV-2
Gastrointestinal manifestations and potential fecal-oral transmission

Editor’s Summary: Two pieces of research published on March 3 gave some evidence that there is a gastrointestinal piece to infection with COVID-19. The research comes from physicians in China, who have been coping with cases of the infection since December.

The first piece of research was done on stool (poop) taken from 73 patients infected with COVID-19. What scientists found was that half of these samples of stool contained material (ribonucleic acid, called RNA) from COVID-19. The stool was positive for the COVID-19 RNA for up to 12 days. In about 20% of these patients, the respiratory test showed no virus but the stool tests did show the presence of the virus.

This is important for two reasons. The first is that COVID-19 could potentially be spread through the fecal-oral route: that is, when the virus is shed from an infected person in their stool and is then taken up by another person, who then in turn gets infected. This can happen with poor hand-washing after using the bathroom, when the virus is spread to other surfaces via an infected person’s hands. It could also occur when a caregiver comes into contact with stool from an infected person (such as when changing a diaper). The second is that it could mean that an infected person could still pass the infection through their stool even if they no longer have respiratory symptoms (like a cough).

The second paper details how, why, and when the symptoms outside the respiratory tract might occur. The authors note that symptoms of diarrhea, nausea, vomiting, and abdominal discomfort might start before the respiratory symptoms (like a cough) begin. The gastrointestinal symptoms might be “mild” and the respiratory tract symptoms come later on. The paper goes on to describe the first case of COVID-19 in the United States, in which the infected person had two days of nausea and vomiting and then diarrhea after being admitted to hospital. The stool as well as the samples taken from the respiratory system were positive for COVID-19. The authors caution that physicians should be aware that people with diarrhea and other gastrointestinal symptoms may be showing the first signs of COVID-19.

Text From the American Gastroenterological Association @AmerGastroAssn

  1. A significant portion of coronavirus patients have diarrhea, nausea, vomiting and/or abdominal discomfort before respiratory symptoms.
  2. Researchers recommend monitoring patients with initial GI distress, which will allow for earlier detection, diagnosis, isolation, and intervention.
  3. Viral RNA is detectable in stool of patients with suspected coronavirus; it is now clear that the virus sheds into the stool.
  4. Viral gastrointestinal infection and potential fecal-oral transmission can last even after viral clearance in respiratory tract.
  5. Prevention of fecal-oral transmission should be taken into consideration to control the spread [of] the virus.
  • Read: Xiao F, Tang M, Zheng X, Liu Y, Li X, Shan H. Evidence for gastrointestinal infection of SARS-CoV-2. Gastroenterology. Published online March 3, 2020. doi:10.1053/j.gastro.2020.02.055
  • Read: Gu J, Han B, Wang J, COVID-19: Gastrointestinal manifestations and potential fecal-oral transmission. Gastroenterology. Published online March 3, 2020. doi:10.1053/ j.gastro.2020.02.054

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