People who live with Crohn’s disease or ulcerative colitis experience stigma because of their inflammatory bowel disease (IBD). The taboo topic of bowel disease can permeate all aspects of a person’s life, especially when there are cultural influences also at play. Tina Aswani Omprakash, who lives with Crohn’s disease and a permanent ileostomy, shares her story of personal empowerment and how she is working to help other people with IBD live their lives with confidence. Tina describes how IBD has profoundly affected her family as well as why she decided to become an outspoken advocate for the IBD and ostomy communities and start her blog, Own Your Crohn’s.
It’s common for people with IBD to look online for patients who have a similar disease journey to their own. For men, however, there are fewer places to find such a peer because there are not as many men in the IBD influencer space as there are women. That’s where Rasheed Clarke, author of Three Tablets Twice Daily, blogger, and ulcerative colitis and j-pouch patient steps in. Hear Rasheed contrast how his running career is different before and after j-pouch surgery, his thoughts on being one of the few male voices in the online IBD community, how we can encourage more men to share their journey, and the wild and wonderful thing he did with a toilet for World IBD Day in 2017.
An elevator speech or elevator pitch is a quick summary of a topic that can be given in about under a minute: just enough time to take an elevator ride. It’s usually thought of in a business sense, like a sales pitch or an idea you have that you present to someone in management upon a chance meeting (such as in the elevator). The use has been expanded to mean any prepared and rehearsed speech that you can give quickly on a moment’s notice. The purpose of this article is to guide you on crafting your elevator speech about your inflammatory bowel disease (IBD).
What compels a person to share their personal journey with IBD? For Rasheed Clarke, author of Three Tablets Twice Daily, his writing began as a way to keep track of everything for himself and his healthcare team. It quickly turned into a tool that he used to show those around him the stark realities of a life with IBD: bloody diarrhea and all. His coworkers and friends were shocked to learn how much he was coping with every day but not everyone close to him approved of his honesty. On this episode of About IBD, Rasheed digs into the positives, the negatives, and the responsibilities that come with being an influencer in the IBD space.
As people with inflammatory bowel disease (IBD), it is important that we share our stories. We need to share in order to bring awareness of our disease amongst the public but also to other people who live with the disease. IBD is isolating but there is a thriving community that’s willing to share information and support in order to prevent anyone from feeling alone in their disease.
However. I have concerns.
Why is it important to tell our stories? Every person who has IBD is unique and so is their disease journey. You might not think your experience is relevant to others living with IBD or another chronic condition, but it is, in many ways. A story can provide validation and hope while helping put the reality of life with IBD in perspective. Brooke Abbott of The Crazy Creole Mommy Chronicles and IBD Moms and I continue our discussion of how we can support others with IBD through telling our stories and listening to yours.
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.
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.
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.”