We used to be told that women with IBD couldn’t have children. We were also told people with IBD shouldn’t have children.
The truth is this: women with IBD get pregnant and have healthy pregnancies and babies. We have more evidence and guidance than ever before. Gastroenterologist Dr Jill Gaidos, Associate Professor of Medicine in the section of Digestive Diseases and the Director of Clinical Research for the Yale Inflammatory Bowel Diseases Program discusses the finer points of pregnancy and IBD. When to seek help for fertility, what medications should be continued in pregnancy, and the risk of passing on IBD to children.
Kids with chronic illness face special issues when going back to school because they’re at risk of their accommodations becoming eroded. In particular, children who live with Crohn’s disease or ulcerative colitis might be in danger of not being granted appropriate bathroom access. 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. We discuss the worrying behaviors that parents should watch out for in their kids and how we can help kids who feel scared to go back to school.
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.
As of this writing, for the past two months, I have not been to a pharmacy or a grocery store. I have used a delivery service. I, like many other people who live with inflammatory bowel disease (IBD), am immunocompromised because of the medication I receive. I am now reliant on other people to obtain the things we need for our household, but it’s unclear to me if this is the right decision.
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.
The last thing my family did before going into quarantine at home was to go to the grocery store, of all places, to sell Girl Scout Cookies and fundraise for the Boy Scouts. We meet all kinds of people while fundraising at the grocery store, and this time was no different in that respect. However, there were some noticeable contrasts, as most people were keenly aware that we were facing changes to our everyday lives in response to the pandemic.
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.
Crohn’s disease and ulcerative colitis are diseases of young people. Women are often diagnosed during their childbearing years, which means that inflammatory bowel disease (IBD) enters into the equation when considering becoming pregnant. I talk with Beth Kiernan, a Teratogen Information Specialist at MotherToBaby about how women can learn more about how to manage IBD medications before conception, during pregnancy, and while breastfeeding.
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.