About IBD
People with IBD are more likely to live with anxiety, depression, or other mood disorders than people who don't live with one of these conditions. For that reason, caring for mental health is as important as caring for physical health. But it doesn't always work out that way, as patients may not know how important their mental health is to their physical health, or may not have access to a mental health professional. Abri Bernstein shares her personal journey with ulcerative colitis (UC) and how somatic psychotherapy helped her cope with living with the disease. Abri explains somatic...
info_outline Colorectal Cancer Awareness Month With Dan "Dry Dock" ShockleyAbout IBD
Diagnosed with attenuated familial adenomatous polyposis (AFAP), retired Navy veteran Dan "Dry Dock" Shockley shares his remarkable journey of service, diagnosis, and advocacy. Following his diagnosis, Shockley became a passionate advocate for early detection and reducing the stigma associated with living with an ostomy. He emphasizes the importance of proactive medical care and maintaining a positive attitude in the face of adversity. Through his advocacy work and personal journey, Shockley serves as an inspiration, demonstrating resilience, determination, and a commitment to making a...
info_outline Making Crohn's Disease Funny With Matt NaginAbout IBD
We can hold two truths: Crohn’s disease is funny. It is also not funny. I speak with Matt Nagin, who has many talents, but we focus on his work as a comedian and actor living with Crohn’s disease. Our discussion focuses on how people need laughter and comedy in their lives. Yet, living with an illness like inflammatory bowel disease (IBD), it can be challenging to find those comedic moments. Especially when most people don’t know what IBD is, and even among those who do, they kind of don’t want to hear about it sometimes. Get tips from Matt on how to form a sense of humor about...
info_outline Amber's Year in Books 2023About IBD
What did you read over the past year? If you made a reading goal: did you hit it? The books I read in 2023 included biographies, fantasy, fiction, and romance. Plus, I had several authors who live with Crohn’s disease or ulcerative colitis on the show this year, so I read their books as well. Hear more about some of the books I enjoyed in 2023, how you can hear more from authors with IBD, and ways that you can hit those reading goals this year. IBD Author Episodes: Books mentioned in this episode: ...
info_outline IBD Connect With Lisa FournierAbout IBD
A diagnosis of inflammatory bowel disease (Crohn’s disease, ulcerative colitis, IBD) affects the entire family. When it’s a child that’s diagnosed, it changes so many things and brings a host of challenges. Families experience many unmet needs related to IBD. My guest is Lisa Fournier of IBD Connect. Lisa is the mother of two children who live with IBD. Her experiences in helping them manage IBD at different stages in life compelled her to be a support for others. She worked with her local hospital to start a support group and eventually founded IBD Connect. Learn about the programs IBD...
info_outline Post-Traumatic Stress Disorder and IBD With Stephanie Brenner, LCSW, MSWAbout IBD
My guest is Stephanie Brenner of Chronic Illness Psychotherapy. Stephanie is a Licensed Clinical Social Worker who has experience in working with clients with chronic illnesses. She has also taken on a variety of roles in GI space, including previously serving on both the advisory team for the Pediatric Crohn’s Guidebook and the recruitment committee for the Rome Foundation’s GastroPsych organization. Stephanie lives with Crohn’s disease and a permanent ileostomy and is also a cancer survivor. I asked her to help us better understand PTSD and PTS as they relate to having a chronic...
info_outline IBD in the Hispanic Community With Oriana Damas, MDAbout IBD
As an assistant professor of medicine in the Division of Gastroenterology at the University of Miami Miller School of Medicine, and the Director of Translational Studies for the Crohn’s and Colitis Center, Dr. Damas sheds light on the misconception that IBD only affects certain ethnicities. Her extensive research explores the connection between of environment and genetics in the development of IBD, with a special focus on its impact on immigrants from Latin America. Dr. Damas shares insights into the challenges of studying the role of diet in IBD, revealing key findings from her research and...
info_outline Positivity Beats IBD With Josef MillerAbout IBD
What is it like to be a teen living with Crohn’s disease? If you’re like Josef Miller, you channel the challenges of the diagnosis and management of IBD into action. Josef has written a book about his experiences, entitled "The Purple Rose," and created an initiative called "Positivity Beats IBD," which creates inspirational cards for people living with IBD and other conditions. Learn about Josef's journey with Crohn's, his multicultural background, and how and why he decided to write a book. Find Josef Miller at: Instagram — Positivity Beats IBD: Instagram — Josef Miller: Book: ...
info_outline Designer $hit: A Microbiome Love Story With Saffron CassadayAbout IBD
What options are you wiling to try to manage your ulcerative colitis or Crohn’s disease? How about putting someone else’s stool into your own colon? Fecal microbiota transplants (FMTs) — using stool from a donor to repopulate bacteria in the colon — are being studied for use in treating inflammatory bowel disease (IBD). Filmmaker Saffron Cassady decided to try do-it-yourself FMT to treat her ulcerative colitis, using stool from the healthiest person she could find: her husband. The journey is captured in her film, Designer $hit, which explores both the science and potential behind FMT....
info_outline Coping With IBD While in Military Service With Dr Anish PatelAbout IBD
What do all the new oral drugs available for treating IBD have to do with military service? Being diagnosed with IBD might mean leaving the military for some service members. Part of the reason is that it’s not possible to be deployed while receiving a drug that’s an injection or an infusion. But when a medication works well and happens to be in pill form: that’s a game-changer. Dr Anish Patel, the Medical Director of the Inflammatory Bowel Disease Center at Brooke Army Medical Center gives an update on how IBD is treated in the military, what he sees on the horizon for IBD,...
info_outlineFrom the beginning of the COVID-19 pandemic, people with inflammatory bowel disease (IBD) have had many questions. Now that vaccines against the virus are becoming available, people living with Crohn's disease or ulcerative colitis need even more information in order to make decisions. I asked Dr David Rubin, Chief of the Section of Gastroenterology, Hepatology & Nutrition and the Co-Director of the Digestive Diseases Center at The University of Chicago Medicine to answer some of these initial questions about the first COVID-19 vaccines (manufactured by Pfizer and Moderna). Topics discussed on this episode include:
- How vaccines work
- How mRNA works
- How IBD medications affect the immune system
- IBD medications and their potential effect on COVID-19 vaccination
- When we'll have more information about COVID-19 vaccines and IBD
- Why side effects with vaccines are expected and what they mean
Key Quotes:
- The first thing is to remember that inflammatory bowel disease itself is a condition where in almost all situations, the immune system is overactive. So having Crohn's disease or ulcerative colitis is not a situation where you're immune deficient.
- So IBD patients in all the analyses during COVID have not actually been found to be at increased risk for getting infected, or at increased risk for developing COVID as having just because they have Crohn's or colitis or have an ostomy or have a j pouch.
- The messenger RNA is degraded within a couple days it's out of your system doesn't hang around. It doesn't ever enter the nucleus of cells, it doesn't become a permanent part of your genetic material in your body. And therefore that's why it is thought to be extremely safe.
- But I want to make it clear to everyone that they didn't just decide to do this in February, March. This was something that actually was in development, it just got pushed through because of the critical nature of the pandemic.
- ... there are no data to say that vaccination triggers IBD. And it's been looked at carefully in many studies. And there's no data to show that getting a vaccine triggers a relapse of your IBD. And the newer vaccines that we're talking about here, will not do that either.
- ...we don't know for sure yet is whether you'll have impaired ability to mount a protective immunity at the same level as if you weren't on therapy. But that doesn't mean you won't develop any immunity. And in fact, it's possible that you'll develop the same immunities to general population because the messenger RNA vaccine is a completely new mechanism.
Dr Rubin's Tweets and Tweetorials:
- "I've created a thread that summarizes the statements from the #IOIBD global expert panel about management of #IBD during #COVID19." https://threadreaderapp.com/thread/1247526583985823749.html
- "Here are my thoughts and a few updates about #SARSCoV2 vaccines, and also about implications for our #IBD patients. A tweetorial in 20 parts." https://threadreaderapp.com/thread/1333972549848469508.html
- "Terrific @US_FDA presser this morning. The agency has its origins in SAFETY and then EFFICACY became part of their regulatory pathway. Both Director Hahn @SteveFDA and career scientist Dr. Peter Marks @FDACBER used the language "safety and efficacy" (in that order). IMPORTANT." https://twitter.com/IBDMD/status/1337771896721563655
Further Reading:
- Understanding How Vaccines Work
- How mRNA Vaccines Work
- Understanding and Explaining mRNA COVID-19 Vaccines
- How the Pfizer-BioNTech Vaccine Works (NYT: Paywall)
- GI Physicians Urge COVID-19 Vaccines for All IBD Patients
- COVID-19 Vaccines: What IBD Patients & Caregivers Need to Know
- Getting a COVID-19 Vaccine: What to Know If You’re Immunocompromised
- Expect Mild Side Effects From COVID-19 Vaccines, CDC Advisory Group Says
- Doctors for America COVID Vaccine FAQ Toolkit
Scholarly Publications:
- Winter is coming! Clinical, immunological, and practical considerations for vaccinating patients with IBD during the COVID pandemic
- COVID-19 vaccinations in patients with inflammatory bowel disease
- Safety and immunogenicity of the ChAdOx1 nCoV-19 vaccine against SARS-CoV-2: a preliminary report of a phase 1/2, single-blind, randomised controlled trial
Find David T. Rubin, MD at The University of Chicago Medicine, Twitter, Rubin Lab, Rubin's Reflections (Blog), and Cornerstones Health.
Find Amber J Tresca at AboutIBD.com, Verywell, Facebook, Twitter, Pinterest, and Instagram.
Credits: Mix and sound design is by Mac Cooney. Theme music, "IBD Dance Party,” is from ©Cooney Studio.