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.
People who live with inflammatory bowel disease (IBD) have had many questions regarding the COVID-19 pandemic and the vaccine rollout is no different. The good news is that prominent IBD physicians are advocating for people who live with Crohn’s disease or ulcerative colitis to get vaccinated against SARS-CoV-2 (the virus which causes COVID-19). As healthcare professionals, many of them have already received a vaccine themselves.
After speaking with Dr David Rubin, highly respected IBDologist, fierce advocate for patients, and consummate educator who graciously responds to my emails, on About IBD, I became better aware of the concerns of the IBD community in regards to vaccination. I’ve spent the better part of the last month working towards answering questions and reading research.
To that end, I have come up with 5 nuggets of information that address some of the chief concerns about COVID-19 vaccinations in people who live with IBD.
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.
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
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.
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.