Even when you’re knowledgeable about IBD, it can still sneak up on you and skew your perception of how much control the disease has over your life. Angelica Catalano, Director of Media Partnerships at The Mighty, describes how ulcerative colitis has affected her since her diagnosis at the age of 6, and how she was living with symptoms on a daily basis. Emergency surgery shook her world, prompting her to make a change in her treatment program to prevent future IBD-related complications. Through her work at The Mighty, Angelica pursues her passion of helping people with chronic illness improve their quality of life by bringing them together with the nonprofits that provide support and resources.
What have you done when you couldn’t get anyone to take the symptoms of IBD seriously and you found yourself out of options? For Meredith, the road to a Crohn’s disease diagnosis was long and so frustrating that she wound up pleading for help from a specialist she’d never met. Going online to connect with other patients also took Meredith to places both light and dark, and she, Jaime, and I sort through our various experiences with social media as well as how we can work towards creating more hopeful content for new IBD patients in the future.
Is it possible to take the diagnosis that turned your world upside down and turn it into a positive force in your life? My guest on About IBD is Lilly Stairs, Head of Patient Advocacy at Clara Health who lives with Crohn’s disease did exactly that. First diagnosed with psoriatic arthritis, it was only after Lilly’s symptoms weren’t improving and she was in and out of the hospital that healthcare providers finally discovered a Crohn’s disease flare-up in her small bowel. Lilly found the right mix of treatments to get her Crohn’s under control and now works with her team at Clara to connect patients to clinical trials.
Podcasting is not my job. I’m fortunate enough that I can indulge in something that feeds my soul because I am paid for writing and for consulting (both inside the IBD space and outside of it). There’s no money in podcasting for me as of this writing. I don’t have sponsors and I don’t do it on behalf of someone else. I do it because I had an idea and I wanted to explore it. I gathered my support network around me and I jumped right in with both feet.
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.
What happens when a diagnosis of Crohn’s disease stands between you and your chosen career? This is exactly the barrier that veteran journalist and news anchor Natalie Hayden faced in the early days after her IBD diagnosis. Her decision was to gather her support system around her and get camera ready. Find out how she made it as a morning news anchor, found the love of her life, started her family, and founded Lights, Camera, Crohn’s.
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.
How does IBD impact the family? Couples who are thinking about having children when one or both of them have IBD often have questions about how the disease will affect their family. Amber interviews her 8-year-old daughter and 10-year-old son about how IBD does — and doesn’t — affect their lives.
With an invisible illness such as IBD, it can be challenging to protect your quality of life. Patient influencers often push themselves in the service of others and that may seem strange to those that follow along on social media. How can someone be so sick and yet be able to attend a medical conference? Sara Ringer of Inflamed and Untamed explains how what you see online can be misleading and how she manages two difficult digestive diseases, all while striving to live a fulfilling life that includes being a resource for other patients seeking information and support.
What’s a Twitter Chat?
A Twitter chat is a way for Twitter users to gather together at the same time and talk about a particular topic. In this case, we’re moms who have IBD and we want to discuss clinical trials. Our co-host this month is Clara Health, a group focused on making it easier for patients and families to access breakthrough treatments. By searching for, or clicking on, the hashtag, #IBDMoms and #PatientsHavePower you can follow along with all the posts using that tag. In this way, you can see the conversation and also take part.