About IBD

Have you ever seen a person who lives with inflammatory bowel disease (IBD) in a movie or TV show? If so: was the depiction positive or negative?

My guest is actor, writer, and filmmaker Derek Mari. Derek lives with Crohn's disease and his IBD journey inspired him to create a story that explores the way people cope with living with a chronic illness. He has already filmed a short film, entitled "Crohnie," which was positively received at several film festivals (before the pandemic shut everything down).

Derek's next project is a full-length feature film with a main character who lives with Crohn's disease. Loosely autobiographical, it will examine the journey to acceptance of life with a chronic illness, and show how that life can be full and filled with success. Learn more about Derek and his Crohn's story, as well as how you can get involved in the crowdfunding program to get this film made.

Find Crohnie Movie on Vimeo, Facebook, Twitter, and Instagram.

Find Derek Mari on Vimeo, Twitter, and Instagram.

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.

Telling your Crohn's disease or ulcerative colitis story is powerful. It can be freeing but it can also come with some unexpected side effects.

Welcome back Rosanne Mottola, who originally intended to talk over receiving her second dose of the Pfizer BioNtech COVID-19 vaccine. She told her ulcerative colitis story and about receiving her first dose on Episode 87, "COVID-19 Vaccination With UC Patient Rosanne Mottola." She gives her experience on her second dose, how it affected her, and what her family's plans are now that she's vaccinated.

Additionally, Rosanne had another part of her journey that she wanted to share. She listened to her first About IBD episode (something a lot of guests don't actually do), as did her family. Reflecting on her ulcerative colitis journey brought things back in a fresh way. She tells me how revisiting some parts of her life in this way was both troubling and healing. It's an important part of the disease journey, especially for those who tell their story publicly, that doesn't often get discussed.

Concepts discussed on this episode:

• Clostridium Difficile Infection With Inflammatory Bowel Disease
• Dependent Coverage for Young Adults
• CDC: COVID Vaccine Doses Can Be Spaced Up to 6 Weeks Apart
• You Got Your COVID-19 Vaccine. Now What?
• CDC: Fully Vaccinated People Don't Need to Quarantine After COVID-19 Exposure
• Yes, Social Distancing Does Lower Your Chance of Contracting COVID-19
• Here's Why Your Symptoms May Be Worse After Your Second COVID-19 Shot
• 5 Ways To Prepare for Your COVID-19 Vaccination

Find Rosanne Mottola on Facebook, Twitter, and Instagram.

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.

Living with one disease is bad enough, but living with two adds more than two times the complexity. As a young man, Aaron Blocker was diagnosed with Crohn's disease after years of coping with strange and seemingly disconnected signs and symptoms. He continued to have problems which resulted in two hip replacements that were blamed on prednisone. However, after one of those hip replacements became dislocated, Aaron went looking for more answers and wound up suspecting that he also had an ultra-rare condition called hypophosphatasia.

Concepts discussed on this episode:

• Osteonecrosis (Avascular Necrosis) Explained
• What Is Alkaline Phosphatase?
• Soft Bones, Inc
• National Organization for Rare Disorders (NORD)
• Ultra-rare disease diagnosis is an uphill battle

Find Aaron Blocker on Facebook, Twitter, and Instagram.

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.

During times of stress, our personal relationships may suffer. In the pandemic, we are finding ourselves spending a lot of time with those in our households, and for couples, that can start to take a toll. Certified sex educator Kait Scalisi, founder of Passion By Kait, shares her knowledge and experience as a neuroscientist, public health professional, and couples' counselor to help us understand how to better manage our relationships during the pandemic and beyond.

Concepts discussed on this episode:

• Sexy Truth or Dare Pick A Stick
• How to Be a Good Partner During Quarantine
• How to Keep the Romance Alive Amid the Coronavirus Pandemic
• 3 Fun Sex Ideas for Couples—That You Can Try Tonight
• Mindful Sex Practices
• Sexy Conversation Starter Kit

Find Kait Scalisi, founder of Passion By Kait, on Facebook, Twitter, and Instagram, YouTube, and Pinterest.

Find Amber J Tresca at AboutIBD.com, Verywell, Facebook, Twitter, Pinterest, and Instagram.

Credits: Theme music, "IBD Dance Party," is from ©Cooney Studio.

People with IBD and other chronic conditions have questions about receiving the COVID-19 vaccination. Rosanne Mottola works at a hospital and was therefore eligible to receive a vaccination through her employer. Rosanne gives her experiences and takeaways as a "mild to moderate" ulcerative colitis patient and how she made the decision to receive the SARS-CoV-2 vaccine. She offers some great advice about how the internet may skew our perception of what IBD life is like, and because of her background, she's a wonderful resource for people living with IBD.

Concepts discussed on this episode:

• An Overview of C. Diff
• Can Immunocompromised People Safely Receive the COVID-19 Vaccine?
• An Overview of Pfizer's COVID-19 Vaccine

Find Rosanne Mottola on Facebook, Twitter, and Instagram.

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.

Did an IBD diagnosis change the direction of your life? For Danielle Golden and Joe Teeters, being diagnosed as a young adult had a profound influence on their lives. The plans they had for their lives were derailed, but they only met, formed a strong friendship, and founded Double Baggin' It because of their IBD. Learn more about their disease journeys, how they met, and how they use humor to raise awareness of IBD and ostomy life both inside and outside the IBD community.

Further Reading:

• Pre-Existing Condition—What It Is & Why It's a Big Deal
• Dependent Coverage for Young Adults
• Proctectomy Surgery for Inflammatory Bowel Disease
• How to Prepare Yourself for Ileostomy Surgery
• Leading Charities and Organizations for Ostomy Surgery

Find Double Baggin' It at Instagram, Twitter, and Facebook.

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.

What does it mean to act with intention? The pandemic altered the course of our year and divorced us from our intentions. However, there were learnings that we can build on to create a better, more inclusive, and informed IBD community. In this mini-episode, I share my thoughts on how the year affected me and how I plan to move forward in 2021 by getting back to my intentions.

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.

From 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.

For many of us who live with a form of IBD, being a performer seems like it would be impossible. Some of the problems include needing a job that provides health insurance, the stress of auditions, and being healthy enough to perform onstage. Justin Baker, however, has found a way to make it work for him as he lives with Crohn's disease and ankylosing spondylitis (a form of degenerative arthritis that's associated with IBD). Justin is an actor, a photographer, and a clown. He tells me how he manages stress, how empathy informs his work and his life, and how not having health insurance led to emergency surgery for his Crohn's disease.

Concepts discussed in this episode:

• Ankylosing Spondylitis
• "Find the Pony"
• Camp Esperanza

Find Justin Baker, actor, on Acts4Food, Facebook, Twitter, YouTube, and Instagram.

Find Justin Baker, photographer, on Photo-Baker.com and Instagram.

Find "You Don't Look Sick: A Documentary Series," on Facebook and Instagram.

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.

Crohn's and Colitis Awareness Week is full of events that aim to raise funds and understanding of inflammatory bowel disease (IBD). One of these is Gaming4Guts, a gaming marathon to raise funds for the Crohn's & Colitis Foundation. Participants stream over Twitch during the 72-hour event but they have also formed a community, keeping in contact year-round on the Gaming4Guts Discord server. Kenzie, John, and Mark from Gaming4Guts sat down with me to talk about their personal connections to IBD, the evolution of Gaming4Guts, and what their goals are this year.

Donate to Gaming4Guts on Tiltify.

Concepts discussed in this episode:

• Indeterminate Colitis
• Pott Puffy Tumor
• Exclusive Enteral Nutrition (EEN)

Find Amber J Tresca at AboutIBD.com, Verywell, Facebook, Twitter, Pinterest, and Instagram.

Find Gaming4Guts on Twitch, Discord, Facebook, and Twitter.

Credits: Mix and sound design is by Mac Cooney. Theme music, "IBD Dance Party," is from ©Cooney Studio.