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 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.
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.”
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.
Recently, during an interview, I was asked to talk about what I couldn’t do because of my IBD or my j-pouch. I may have visibly bristled at the question, though I tried to mask this initial negative reaction. I did think about how to formulate an answer–probably for a good solid minute. In the end, I couldn’t come up with anything.
The interviewer made a few suggestions, but they were things that I don’t dwell on, such as dietary restrictions. Having some dietary restrictions is not something I think about often. I can absolutely still eat all kinds of healthy food as well as not so healthy, yet tasty, food like chocolate, and also have a cocktail. I no longer see food as an obstacle or a problem, because I’ve worked out my diet and I pretty much stick with what I know at this point. Therefore, this is not something I ruminate about or concern myself with too much.
What’s it like to be a competitive swimmer and one day develop Crohn’s disease? Well, you don’t stop swimming! Hear Ryan Stevens, Crohn’s Guy, talk about the work he’s doing to raise awareness of IBD.
For my part, I love it when people tell me they’ve read my writing. Especially when they don’t have IBD themselves or have a close friend or family member with the disease. While I do my best to reach people with IBD so that they have the information they need to make treatment decisions and live better, I also want to reach people who aren’t touched by IBD in order to recruit them as allies. After all, this is the very heart of awareness: people with IBD are already aware. We must reach those who have no reason to become educated about IBD, and offer them the tools to become aware.
“It would be the death of you to come with me, Sam,” said Frodo, “and I could not have borne that.”
“Not as certain as being left behind,” said Sam.
“But I am going to Mordor.”
“I know that well enough, Mr. Frodo. Of course you are. And I’m coming with you.”
― J.R.R. Tolkien,
Do you feel supported in your daily life, as you navigate your way through your diagnosis of IBD? Support can come in many forms, and you probably have several sources of support, but I think it’s probably rather rare to feel supported all the time.
In The Lord Of The Rings, Frodo the Hobbit is charged with carrying The One Ring. The One Ring, which looks like a simple gold ring, is infused with evil power, and it poisons Frodo in body, mind, and spirit. Frodo’s friend and companion is Samwise, who travels with Frodo to destroy The One Ring before it can fall into the wrong hands. Frodo becomes increasingly unstable during their journey — obsessed with The Ring and, in the end, unable to even walk. Sam carries him. Continue reading