Amber and Mariah discuss how women with chronic illnesses cope with advice on medication use in pregnancy—especially in light of the confusion around acetaminophen. Mariah shares her experiences with rheumatoid arthritis and pregnancy, focusing on changes in medication safety data. They talk about the pressure, stigma, and lack of support for pregnant women, the need for nuanced guidance, and provide resources.
A children’s book leads to this conversation, which bridges the worlds of chronic illness, creativity, and connection. I talk with MB (Britt) Mooney, author of “The Mouse Who Couldn’t Eat Cheese,” a children’s book inspired by a young woman named Alex who lived with severe Crohn’s disease. MB, a science fiction and fantasy author, stepped outside his usual genre to create a story that helps kids and families understand invisible illnesses and the power of friendship. You’ll hear behind-the-scenes insight on MB’s creative process, the lessons learned from working with Alex’s family, and the message he hopes every reader takes away—whether they live with inflammatory bowel disease or not.
Amber speaks with Hindy Klein, a member of the Orthodox Jewish community living with Crohn’s colitis. Hindy shares how she manages IBD while observing Jewish laws, discussing challenges with diet, fasting, and hospital care during Shabbat and holidays. She also talks about overcoming stigma, the importance of community support, and how her faith helps her cope. The episode highlights the need for cultural sensitivity in healthcare and the value of sharing personal stories to support others with chronic illness.
Continue reading
Jonathan Stewart, co-founder of Evergreen Adventures, a nonprofit focused on connecting the chronic illness community with outdoor activities, shares his journey with type 1 diabetes, ulcerative colitis, and sarcoidosis. Jonathan emphasizes the importance of staying active despite health challenges, describes the need for planning outdoor adventures, and encourages everyone to find joy in nature, no matter the circumstances.
Continue reading
Amber hands over hosting duties to Jamie Holland, a patient advocate with Crohn’s disease. They discuss their personal experiences with inflammatory bowel disease (IBD). They focus on Amber’s decision to have j-pouch surgery after being diagnosed with dysplasia and the effects it had on her fertility. Jamie asks Amber to share about the emotional and physical challenges of motherhood with IBD, including fatigue and guilt. They also touch on the possibility of passing IBD on to children and the importance of community and support.
Continue reading
My husband, Mike, and I recorded a deeply personal and informative discussion about Mike’s journey with a hernia diagnosis and subsequent robotic surgery. This episode offers insights for anyone facing a similar situation, including the importance of preparation, support, and self-advocacy. Below are the key takeaways from our conversation.
Continue reading
I’m giving away 3 copies of “Up and Adam: A Patient’s Experience on Winning with IBD” by Adam Finkelstein.
“Up and Adam” is a book for kids and parents who are touched by IBD. The book depicts a relatable role model for young (pediatric) patients so they know they are not alone. As a child, Adam did not realize that having IBD was unique, and so he did not feel different from other kids. Adam gives practical tips and tricks for families to manage the ups and downs of IBD with emotional resilience.
Continue reading
At the end of the year, we see the gift guides come out. There’s one for every type of person, usually focused on age and gender, but also based on hobbies or interests. Or, even, based on chronic illness such as inflammatory bowel disease (IBD).
There’s no doubt, gift guides are helpful. For someone like me, who doesn’t go out shopping a lot, it’s useful to know what’s out there. Learning about the latest in cookware or video games can be helpful. To me, the funniest ones are the gift guides for teens or college students. Even I know they just want cash.
Continue reading
Inflammatory bowel disease (IBD, Crohn’s disease, ulcerative colitis, and indeterminate colitis) is being diagnosed in young people with greater frequency. Research on how to treat pediatric patients, and indeed how to prevent IBD in the first place, is still lacking. What’s not in short supply is the strength and resilience shown by pediatric IBD patients and their families. Meet Brooke, a pediatric patient at Connecticut Children’s Hospital who credits her dedicated IBD team with her ability to live a life filled with summer camp, dance, and tennis lessons, without the symptoms of ulcerative colitis.
Continue reading
The back to school period is already a time of so much change but once again in this pandemic, parents and school systems are also facing difficult choices. The experiences of families during the pandemic has been diverse, which means that individual needs need to be addressed. But how do we manage that? Dr Brad Jerson Pediatric Psychologist in the Division of Digestive Diseases, Hepatology, and Nutrition at Connecticut Children’s, puts some framing around these issues and how we might approach them. Topics discussed include making the decision to go back to school in the building, 504 plans for kids with digestive conditions, and helping kids to transition to school in a difficult atmosphere.
Continue reading