New Podcast Brings Attention to the Disparities Experienced by People of Diverse Backgrounds Who Live With Inflammatory Bowel Disease
Patients, healthcare providers bring attention to the rising incidence of Crohn’s disease, ulcerative colitis, across racial and ethnic groups
CONNECTICUT, Apr 5, 2021 — Inflammatory bowel disease (IBD, which includes Crohn’s disease, ulcerative colitis, and indeterminate colitis) affects people of all ethnic backgrounds.1 However, people from minority groups experience a disparity of care that can result in worse outcomes, including complications, lowered quality of life, and increased mortality.2
People who live with inflammatory bowel disease (IBD) have questions regarding COVID-19 vaccination and how it may be impacted by their disease or their medications. IBDologists recommend that people who live with Crohn’s disease or ulcerative colitis receive a vaccination for COVID-19. Check with your physicians on your individual circumstances but, in general, the advice is that the vaccines are safe and effective for people with IBD, and they are recommended.
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.
When I asked Rosanne Mottola to come on About IBD and discuss her recent vaccination against COVID-19, I was excited that we could share her story with other people who live with inflammatory bowel disease (IBD). It has been a difficult year for everyone, but people who live with Crohn’s disease or ulcerative colitis have also weathered a significant amount of uncertainty in regards to their health.
I also asked her to come back to briefly update me after her second dose and I thought I’d add it on as a segment of a longer episode. My intention was to understand how she felt physically and emotionally after the second shot, which wouldn’t take long. But it turns out we had more business to discuss and instead, we created another full-length episode together.
It became clear to me that Rosanne’s experience through the process of agreeing to tell her ulcerative colitis story and in creating Episode 87 with me brought up some salient issues that I’ve probably been long remiss in addressing.
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.
I remember looking down at my abdomen shortly after having the first of two surgeries to complete the j-pouch procedure for treating ulcerative colitis. It was open surgery, so I had a line of staples closing the surgical site that was about 8 inches long. I spent most of those first weeks with a pillow clutched against my abdomen because it felt like my guts were going to fall out. I couldn’t imagine how I would ever complete a simple sit-up again.
Yet, I did recover. I can do the things that seemed beyond reach in those first days and weeks, but it didn’t happen right away or without effort. As the country becomes vaccinated against COVID-19 and we consider next steps, I am reminded of that feeling of having no idea how I would ever be whole again. Restarting a face-to-face life is off in the distance: hazy to the point of being unrecognizable. I’m struck by the similarities between resuming life after surgery and resuming life after a pandemic. They happen slowly, with the individual steps being so small they are almost imperceptible.
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.
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.
Crohn’s & Colitis Congress is a meeting focused on inflammatory bowel disease (IBD) that’s organized by the American Gastroenterological Association and the Crohn’s & Colitis Foundation. The meeting is geared towards healthcare providers who want to learn more about treating patients who live with IBD.
Ryan Ungaro, MS, MD, Assistant Professor of Medicine (Gastroenterology) at Icahn School of Medicine at Mount Sinai, gave a presentation at Crohn’s & Colitis Congress entitled “Understanding IBD-Related Care in the Era of COVID-19.”
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 gives some great advice about how the internet may skew our perception of what IBD life is like, and because of her experiences and background, she’s a wonderful resource for people living with IBD.