Back to school will be quite different for families across the United States and the world this year. There aren’t many answers to be had to our questions, yet we must make decisions with the best information that we have at this time. I speak with Dr Brad Jerson, a Pediatric Psychologist in the Division of Digestive Diseases, Hepatology, and Nutrition at Connecticut Children’s and an Assistant Professor of Pediatrics at the University of Connecticut School of Medicine about how we can prepare our kids, and ourselves, for the school year. We discuss the behaviors we can model for our children, how we can talk to young kids about mask wearing, and how to engage kids of all ages in conversation about their fears and anxieties during this time.
How does being diagnosed with a chronic illness affect your path in life? For Mariah Leach, a rheumatoid arthritis diagnosis came out of the blue and put her at a crossroads. She decided to take the road towards patient advocacy. What started as a way to process her feelings and keep family and friends updated about her condition through her writing has evolved into a calling. Today, she has become a tireless advocate for people living with rheumatoid arthritis and as a resource for parents with chronic illness. It’s Mariah’s goal to ensure no one feels alone in their parenting journey. To that end, she has developed Mamas Facing Forward to support parents and foster the connections she was missing in her first years as a mom.
Ostomy surgery is a life-saving procedure that can improve quality of life, but that doesn’t mean it is always easy to accept. Stephanie Hughes founded The Stolen Colon after having surgery to place an ileostomy to treat her Crohn’s disease. She’s an ostomate, but she’s also a writer, a woman, a wife, a mother, and a resource for people in the IBD and the ostomy community. She shares her journey through Crohn’s disease and acceptance of her ostomy with me, including what her kids think of her stoma, how she manages issues around privacy, and what happened when a person who didn’t know she had an ileostomy told her that ostomies were smelly. Listen all the way to the end to hear how Stephanie’s advocacy in the ostomy community touched one family and gave them hope.
One of the presentations I attended at Advances in Inflammatory Bowel Diseases (AIBD) in Orlando, Florida in December 2019 was regarding the IBD Parenthood Project. The American Gastroenterological Association (AGA) has put together a clinical care pathway for pregnant women who live with IBD. The pathway was created with input from representatives from different specialties that may care for pregnant women with IBD, including gastroenterologists, maternal-fetal medicine specialists, teratologists, lactation specialists, and patients.
Being diagnosed with inflammatory bowel disease (IBD) at any time or at any age is challenging. However, the pre-biologic era was especially difficult because of the lack of treatment options and the absence of some of the legal protections that are in place today. Danielle O’Connor tells her story of being diagnosed with ulcerative colitis at a young age and how she managed her career as a special education teacher through many hospitalizations and surgeries.
We tend to think of politics as being for adults. But how do adults become engaged citizens who take part in their community? They start as children, learning from parents about the importance and benefit of volunteering, voting, and understanding the challenges and opportunities in their community. There’s so much that parents can do to raise children to be active community members. In addition, some of the many skills that are learned along the way, include public speaking, networking, teamwork, strategy, and communication. Continue reading →
How does IBD affect your family? Do you know about the tools and resources that are available to help you on your disease journey? On this episode of About IBD, I talk with the Director of Patient Education and Support at the Crohn’s and Colitis Foundation, Catherine Soto, who outlines the many tools the Foundation provides for anyone with IBD, including those made just for parents, kids, and teens. I also spoke with Dr Rajeev Jain, who tells me about a new, one-of-a-kind resource for women with IBD who want to be mothers, called the IBD Parenthood Project. And finally I called upon Brooke Abbott, co-founder of IBD Moms, to talk about her role as a patient in developing the IBD Parenthood Project, and she entertains me with a small rant about social media.
What is the microbiome, how might it be connected to IBD and other conditions, and how can it affect health when it’s pushed out of balance? Dr Sarina Pasricha of the Christiana Care Health System gives me the scoop on how the microbiome is created when we are young and how it changes with our activities and diet, as well as why we should not try fecal transplants at home, and how a little bit of dirt is good for our kids.
What are your traditions around Thanksgiving? What we eat and how we celebrate Thanksgiving depends on where we live, our ethnicity, and our family traditions. What matters is coming together and remembering to be thankful. Brooke Abbott of The Crazy Creole Mommy Chronicles and IBD Moms tells me about some of her family’s Thanksgiving traditions and how she talks about being grateful with her son. We discuss some of the ways we try to support the IBD community and what we can do better, especially during the hectic and stressful holiday season. Plus, see the end of the show notes for some of Brooke’s recipes!
What is your favorite week of the year? For the kids, counselors, and volunteers at Camp Oasis, their favorite is camp week. Learn more about a summer camp that’s designed especially for kids who have IBD but is also the place where the campers actually feel the most freedom from their disease. Amber visited camp on visitor’s day and talked with campers, leaders in training, and counselors to find out what makes Camp Oasis so special to them. Continue reading →