Tag Archives: ibd

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.



March 24, 2020 Update

There are now 106 reported cases of COVID-19 in people with IBD. There have been 6 deaths: 2 in the 21-30 year old group, 1 in the 41-50 year old group, 1 in the 51-60 year old age group, 1 in the 81-90 year old age group, and one in the over 90 year old age group. See the update from the SECURE-IBD Registry.

The International Organization For the Study of Inflammatory Bowel Disease met on Friday, March 20th. 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 (SARSCoV2) 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 (SARSCoV2) 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 COVID-19.†
  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:
*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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About IBD Episode 61 - Reporting from Advances in IBD 2019: Getting Out of the Bathroom

About IBD Podcast Episode 61 – Reporting from Advances in IBD 2019: Getting Out of the Bathroom

In December 2019 I went to Advances in IBD, which is a medical meeting that’s focused entirely on Crohn’s disease and ulcerative colitis. The understanding that IBD is more than a “bathroom disease” has finally hit home, and attendees (which include healthcare professionals such as nurses, dietitians, gastroenterologists, GI psychologists, and colorectal surgeons) were educated on a variety of topics. In this episode I provide some of the highlights of the meeting including sessions on diet, medication risks, and pregnancy. 

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Reporting from Advances in IBD 2019: Parenthood Project Consensus Statement

Reporting from Advances in IBD 2019: Parenthood Project Consensus Statement

One of the presentations I attended at Advances in Inflammatory Bowel Diseases (AIBD) in Orlando, Florida in December 2019 was regarding the IBD Parenthood Project. The American Gastroenterological Association (AGA) has put together a clinical care pathway for pregnant women who live with IBD. The pathway was created with input from representatives from different specialties that may care for pregnant women with IBD, including gastroenterologists, maternal-fetal medicine specialists, teratologists, lactation specialists, and patients.

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About IBD Episode 57 - I Really Don't Think About My Ostomy Anymore

About IBD Podcast Episode 57 – I Really Don’t Think About My Ostomy Anymore

Living with a permanent ileostomy as a result of Crohn’s disease hasn’t stopped Ryan Stevens from participating in the sport he loves. He worked his way back from crushing IBD flare-ups and multiple surgeries in order to train for the ultimate triathlon: the IRONMAN. In this second part of Ryan’s story, hear what happened to him while on the bike route, why the ostomy may actually provide an advantage, and Amber’s unfiltered thoughts on the competitiveness of the triathlon community.

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About IBD Podcast Episode 52 – Summer of Activism: Connecting the Numbers to a Story

In the final episode of my Summer of Activism Series, I asked Brooke Abbott of The Crazy Creole Mommy Chronicles to help us better understand Congressional Briefings. During Crohn’s and Colitis Awareness Week, she spoke at a briefing about IBD and minority health. It was an opportunity to bring awareness to this little-discussed factor of IBD and it presented some challenges and opportunities. Learn more about Congressional Briefings, how they are an important tool for advocacy groups, and how they have an impact on public policy.


IBD Dance Party

It’s a celebration of 50 episodes of About IBD! Download your FREE copy of the new single, “IBD Dance Party,” by signing up for the About IBD newsletter here:

http://aibdnewsletter.aboutibd.com/music


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Have Your Voice Heard on the Hill

About IBD Podcast Episode 50 – Summer of Activism: Have Your Voice Heard on the Hill

The inflammatory bowel diseases (IBD) can make people feel powerless and isolated. Participating in day on the Hill events in Washington DC with patient advocacy groups are one way to take back control and have your voice heard by those who can help affect change. Hear from Jaime Holland of Pretty Rotten Guts, who describes her experiences in lobbying on Capital Hill including why it’s important to her, how she navigates the day with mobility issues, and why the experience is empowering.


IBD Dance Party

It’s a celebration of 50 episodes of About IBD! Download your FREE copy of the new single, “IBD Dance Party,” by signing up for the About IBD newsletter here:

http://aibdnewsletter.aboutibd.com/music


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IBD Activists You Should Follow on Social Media

Summer of Activism: IBD Advocates You Should Follow on Social Media

Improving the quality of life for people with inflammatory bowel disease (IBD) takes commitment and focus to understanding the issues affecting patients and caregivers. Real change means engaging with all stakeholders, including physicians, industry, and government, as well as patients and caregivers. A future that includes more effective treatments and compassionate care for those touched by IBD will only happen when those who have the best interests of patients at heart take their seat at the table. There are many activists in the IBD community that are doing this hard work and you can strengthen their achievements by amplifying their voices.

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Episode 45 - Where Do We Go From Here_

About IBD Podcast Episode 45 – Where Do We Go From Here?

What’s new in inflammatory bowel disease (IBD) treatments and what’s next on the horizon? Dr Peter Higgins, a gastroenterologist, IBD specialist, and researcher at the University of Michigan discusses what’s new in IBD from the Crohn’s and Colitis Congress meeting in 2019. We talk fecal transplants, healing strictures in the intestines, and the feasibility of custom ostomy products. It’s a conversation about cutting edge research on Crohn’s disease and ulcerative colitis mixed with the practicality of using these treatments in the real world.

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Princesses Poop Too

About IBD Podcast 44 – Princesses Poop Too

Does having IBD make you feel like a princess? Crohn’s disease and ulcerative colitis are not only painful, serious conditions, but they also carry stigma which leads to patients feeling isolated. Sophia Vicari, the founder of The Princess Promise, is creating a community that challenges the perception society has about digestive disease. Diagnosed with ulcerative colitis while in college, it didn’t take long before Sophia decided she needed to work to help others in the IBD community become more comfortable talking about poop. Hear Sophia’s disease journey, what it was like for her to be Miss Camden County, NJ, while living with ulcerative colitis, and how she plans to help women with IBD find their inner princess.

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We Still Don't Know What Happened

About IBD Podcast 43 – We Still Don’t Know What Happened

Every person that lives with Crohn’s disease or ulcerative colitis in the United States knows the challenges of dealing with health insurance companies. Denials of service are common, particularly when diagnostic tests are ordered or when a new drug is prescribed. A change in insurance carrier, which can come after a life event (such as getting married or changing jobs) or at the start of the calendar year is another time when patients may find themselves in the appeal process in order to get needed tests or medication. For Jaime Holland, a life change, an insurance change, a calendar year change, and a change in gastroenterologist culminated in her being in danger of not receiving her biologic medication on time. Hear Jaime tell the story of how the problem started, why she had to look to someone outside her physicians office and her insurance carrier to get it solved, and her tips to help you avoid similar insurance snafus. This episode is perfect not only for anyone living with inflammatory bowel disease (IBD) but also anyone who cares for those living with these diseases.

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