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COVID-19 Resources For People Living With IBD

Coronavirus (COVID-19) Resources For People With IBD

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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.

May 3, 2020 Update

There are now 877 reported cases of COVID-19 in people with IBD. There have been 30 deaths entered into the database: 23 of these were in people over the age of 60. 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.

Sources:
*Brenner EJ, Ungaro RC, Colombel JF, Kappelman MD. SECURE-IBD Database Public Data Update. covidibd.org. Accessed on 05/03/20.
†Crohn’s and Colitis Foundation. IBD patient guidance. CrohnsColitisFoundation.org. 12 March 2020.
‡Crohn’s and Colitis UK. Coronavirus (COVID-19) advice. CrohnsandColitis.org.uk. 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.

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In a Pandemic, Every Decision Is Complicated

In a Pandemic, Every Decision Is Complicated

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As of this writing, for the past two months, I have not been to a pharmacy or a grocery store. I have used a delivery service. I, like many other people who live with inflammatory bowel disease (IBD), am immunocompromised because of the medication I receive. I am now reliant on other people to obtain the things we need for our household, but it’s unclear to me if this is the right decision.

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About IBD Podcast Episode 71 - I Evaluated What Was Really Important to Me

About IBD Podcast Episode 71- I Evaluated What Was Really Important to Me

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How does being diagnosed with a chronic illness affect your path in life? For Mariah Leach, a rheumatoid arthritis diagnosis came out of the blue and put her at a crossroads. She decided to take the road towards patient advocacy. What started as a way to process her feelings and keep family and friends updated about her condition through her writing has evolved into a calling. Today, she has become a tireless advocate for people living with rheumatoid arthritis and as a resource for parents with chronic illness. It’s Mariah’s goal to ensure no one feels alone in their parenting journey. To that end, she has developed Mamas Facing Forward to support parents and foster the connections she was missing in her first years as a mom.

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IBD Treatments and COVID-19: What the Experts Say

COVID-19 and IBD: Notes From an AGA Briefing

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I attended a briefing given by the American Gastroenterological Association (AGA) which was focused on COVID-19 and how the disease may affect people who live with inflammatory bowel disease (IBD). The briefing was given by three specialists: AGA Patient Education Advisor, Rajeev Jain, MD, AGAF, of Texas Digestive Disease Consultants; David T. Rubin, MD, AGAF, Joseph B. Kirsner Professor of Medicine, Chief, Section of Gastroenterology, Hepatology and Nutrition, University of Chicago Medicine, Illinois; and Russell D. Cohen, MD, AGAF, Professor of Medicine, Director, Inflammatory Bowel Disease Center, University of Chicago Medicine, Illinois. Drs Jain, Rubin, and Cohen are all integral in the IBD community and generously lend their time and expertise to helping both healthcare professionals and patients better understand IBD. What follows are highlights from this presentation that illustrate what has been learned so far about the intersection of IBD and COVID-19.

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About IBD Podcast Episode 70 - I'm Not Doing This By Myself

About IBD Episode 70 – I’m Not Doing This By Myself

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How would you answer these questions about your inflammatory bowel disease (IBD)?  

  • What is the best part of having IBD?
  • What is the hardest part of your day?
  • What is your least favorite treatment?
  • If you could choose one dance for your doctor, what would it be and why?
  • What is one thing you wish people knew about your condition?

Amber answers these questions, posed by Shawntel Bethea of Crohn’s and Stuff, for fun and also to get the conversation started about how Crohn’s disease and ulcerative colitis affect our lives.

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About IBD Episode 69 - Tips for Telehealth Appointments During the Pandemic

About IBD Episode 69 – Tips for Telehealth Appointments During the Pandemic

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Telehealth has become part of our new normal as we practice physical distancing during the COVID-19 pandemic. Several of the barriers that prevented us from being able to see our doctors for an appointment via a telephone call or a video call have now been managed. However, it’s still a new way to receive healthcare, and both patients and clinicians are adjusting. Learn from Neilanjan Nandi, MD, gastroenterologist and Associate Professor of Clinical Medicine at Penn Presbyterian Medical Center and the University of Pennsylvania about what patients can do to be ready for their telehealth appointments and what it’s like from the doctor’s side of the video conference call.

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About IBD - How to Green Your IBD

How to “Green” Your IBD

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The impact of human activities on the environment is well-documented. Many people are concerned about how their daily lives can have a negative effect on the air we breathe, the water we drink, and the health of ourselves and of our children. My background is in environmental science: it began in high school when I worked to institute a recycling program in the lunchroom. I went on to earn my Bachelor of Science in Environmental Science from Michigan State University.

While there’s nothing we can do about having inflammatory bowel disease (IBD), there is something we can do about how it impacts our environment. Crohn’s disease and ulcerative colitis need treatment over a lifetime and this comes with a variety of choices. Environmental responsibility may be pretty far down on the list of things most people with IBD are concerned about, but there are some simple choices we can make that can have an impact.

The place were we have a lot of control as patients is in our own home and in how we manage our disease (alongside our healthcare teams). A few little changes can make a positive impact in how your IBD affects the word around you. I present some areas where we can think about making choices in regards to our IBD that may help us leave a smaller footprint.

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About IBD Episode 68 - What It's Like to Have IBD and COVID-19

About IBD Episode 68 – What It’s Like to Have IBD and COVID-19

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People living with IBD who have suppressed immune systems because of medication are understandably concerned about their risks surrounding the novel coronavirus and COVID-19. Jamie Horrigan, a medical student and founder of “Sweetened By Nature,” lives with Crohn’s disease and gastroparesis and was diagnosed with COVID-19. She describes her experiences with symptoms, diagnosis, isolation, and recovery. She also gives some insight on why a common complication of coronaviruses, called a cytokine storm, may be an important factor of COVID-19 for people with IBD.

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What to Do If Your Infusion Center Closes

What to Do If Your Infusion Center Closes

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In this moment of physical distancing in order to flatten the curve of people being exposed to the novel coronavirus (SARS-CoV-2) and developing the disease it causes, COVID-19, it may prove challenging to receive medication to treat inflammatory bowel disease (IBD). Certain medications that are given to manage Crohn’s disease and ulcerative colitis are given by infusion. This is most often done at a doctor’s office, infusion center, or at a hospital.

People with IBD have questions about the safety of receiving infusions outside the home at this time. In addition, there have been reports of infusions centers closing for the indefinite future, leaving patients to find another location to receive their medication. All the major gastrointestinal organizations and IBD specialists are recommending that patients still receive their medication at this time. It’s currently thought that the focus should be on avoiding an interruption in care and running the risk of an IBD flare-up. This article will provide resources in order to help patients navigate the closing of an infusion center.

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About IBD Episode 67 - Tips on Getting An Infusion During the Pandemic

About IBD Podcast Episode 67 – Tips on Getting An Infusion During the Pandemic

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We’re living through an usual time and people living with Crohn’s disease or ulcerative colitis have many questions about how the pandemic may affect them. IBD experts agree that it’s important to continue receiving medications during this time to avoid a flare-up. That might mean traveling to an infusion center, hospital, or doctor’s office for treatment. Julie Kennedy of The Semicolon Girl recounts her experience in receiving her infusion of her Crohn’s disease medication in the era of COVID-19, including how the procedure was different, and gives her tips on how to make the process go as smoothly as possible.

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Where Do You Find Your "Normal?"

Where Do You Find Your “Normal?”

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The last thing my family did before going into quarantine at home was to go to the grocery store, of all places, to sell Girl Scout Cookies and fundraise for the Boy Scouts. We meet all kinds of people while fundraising at the grocery store, and this time was no different in that respect. However, there were some noticeable contrasts, as most people were keenly aware that we were facing changes to our everyday lives in response to the pandemic.

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