Are you unique? Do you represent most patients with IBD? Christy Stone of Crohnie Bologna tells the story of her disease journey, how she feels that she’s not unique as an inflammatory bowel disease patient, why she chooses kindness, and why these things make her a better advocate.
Welcome to the year-end wrap up show! I put together clips from my first 14 shows that drop the heaviest knowledge bombs about how life with IBD affects us, our careers, our relationships, and our stress levels.
Do you have an IBD Elevator Speech? I got you, here’s where you can learn to create yours after you listen to Brooke Abbott give hers: www.verywell.com/how-to-create-yo…r-speech-1942452
What are your goals? Are you taking steps each day to move towards those goals? Brian Greenberg, endurance athlete and president of Chronically Better You, tells us how he moved from goals after surgery—getting out of bed and making his own lunch—to training for an Ironman in 2018. People with IBD know the value of structure and Brian explains how he has learned to manage his life with Crohn’s disease and an ostomy through careful planning and setting goals.
Takeda Pharmaceutical Company contacted me and offered me the opportunity to participate in a program that they’d developed which simulates the experience of having inflammatory bowel disease (IBD). The program was being used internally to help Takeda employees understand IBD better and was now being rolled out to participants outside the company. IBD is an exceptionally isolating disease and research shows that it is associated with a high degree of stigma in the public perception.
I was immediately intrigued with the prospect of this program: my first thought was that I couldn’t imagine what this might look like. My second thought was that it sounded like an innovation that could change how participants view IBD and impact their work as health care professionals, industry representatives, and legislators. The program is called “In Their Shoes,” and the full session takes 2 days, but I participated in an abbreviated, 3-hour variant.
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.
Being diagnosed with IBD as a child presents special challenges for kids and for parents. Learn how Brian Greenberg of Intense Intestines Foundation dealt with a Crohn’s disease diagnosis at a young age and transitioned from being a child reliant on parents to help manage his IBD to learning how to manage it all himself.
How does stress affect IBD? We know that stress does not cause IBD, but it does affect the disease. How does IBD actually cause stress, and what can we do to balance our lives in such a way that it does not affect us in a negative way? I talk with my guest, Dr Taft, about how she advises patients with chronic diseases on relieving stress and the tips and tools that have worked for her and her patients in integrating a comprehensive stress relief program into daily life.
The first edition of my About IBD Podcast where I talk about this fungus fracas, how it relates to IBD, and why I’m not too worked up about IBD research done on mice.
Happy Rock – Bensound.com – http://www.bensound.com/royalty-free-music
The second edition of the About IBD Podcast where I talk with 3 women with IBD about their experiences in telling their partners about their illness.