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.
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.
How can we help new ostomates better adjust to their stoma? Megan Johnson, who you might better know as The Front Butt YouTuber, had a unique journey on the way to becoming a permanent ileostomate due to Crohn’s disease. Her experiences with the abysmal patient education material in the hospital after ostomy surgery sparked her desire to make accessible content that helps people adjust after surgery and “be comfortable in their own skin.”
Are you ready to tell your story? Your legislators in Washington D.C., in your state, and your home town want to hear from you about how IBD has affected your life and the legislation you care about. Brooke Abbott of The Crazy Creole Mommy Chronicles and Amber tell you how to get started in health activism and how to make your voice heard in our government!
It’s estimated that half of people who have an inflammatory bowel disease (IBD) try complementary and alternative medicine to treat their disease. Eric Polsinelli of Vegan Ostomy describes how he tried dozens of complementary therapies for his Crohn’s disease but never found anything that worked. He did, however, come away with vital insight about how people living with IBD can assess alternative therapies and talk to their physicians about working them into a comprehensive treatment plan. Continue reading
The healthcare space isn’t a level playing field. Minority populations face complex challenges when it comes to accessing and receiving care, which is why April is designated as National Minority Health Month. In regards to inflammatory bowel disease, it’s not well known that Crohn’s disease and ulcerative colitis also affect minorities. Shawntel Bethea of Chronically Strong and Brooke Abbott of The Crazy Creole Mommy Chronicles discuss how they’ve been affected by healthcare disparity and offer concrete ideas on what can be done to start addressing healthcare gaps in their communities.
Take a journey back to 1999, when cellphones were a rarity, dial-up internet access was still in use, and Amber had her first surgery of the 2-step j-pouch process. Amber’s husband Mike, a writer and communicator, journaled his thoughts on the day of the surgery. This journal was recently uncovered and Amber reads it to Mike and gets his reactions and further recollections of that challenging day.
Megan Johnson of The Front Butt YouTuber has presented 5 questions for people with IBD to answer and then tag someone else using #IBDAdvocacyTag. It’s a great way to get to know people in the community better and hear different perspectives. My answer to the form of IBD I have is not going to be what you expect and my socially awkward moment is pretty epic: I remember every detail about it, even though it happened almost two decades ago. And who did I tag? Well, I do that in my own way, too.