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.Continue reading
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.Continue reading
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.Continue reading
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.Continue reading
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.Continue reading
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.Continue reading
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.Continue reading
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.
In honor of World Breastfeeding Week, I thought I’d share some of my favorite products that helped me when I was breastfeeding. “Wait,” you ask, “I thought all you needed was a pair of lactating breasts?” Yes, that’s true, you can breastfeed with nothing besides your breasts and your two arms, but let’s not be martyrs. It’s fine to rely on some items to be more comfortable and make the nursing experience more rewarding. After all, we should do whatever we can to make the time breastfeeding as pleasant as possible. To that end, here are the items that I used — and liked — while I was nursing my two children.