I’ve made many mistakes along my disease journey. The first, and most dangerous, was to believe that my fate was already sealed.
This post was sponsored by AbbVie Inc. Personal opinions and thoughts are my own.
Crohn’s and Colitis Awareness Week is December 1-7. If you have Crohn’s disease or ulcerative colitis, get tips from gastroenterologist Dr. Corey Siegel, a Crohn’s disease and ulcerative colitis expert, by visiting the online Expert Advice Tool before your next trip to the doctor’s office.
When I was 16, I was diagnosed with a disease I’d never heard of called ulcerative colitis. Approximately 700,000 people in the United States are affected by ulcerative colitis – a chronic inflammatory bowel disease (IBD) characterized by inflammation of the large intestine (colon and rectum). It is not caused by food or a contagious disease.
Those are the facts. Now, for the reality. Continue reading
We think of inflammatory bowel disease (IBD) as being a disorder of the digestive tract, but anyone who has IBD will tell you that it affects the entire body. Something that is often overlooked when dealing with digestive disease is how it affects our emotions. Some people with Crohn’s disease or ulcerative colitis find that there’s one emotion overwhelmingly associated with the disease: guilt. Continue reading
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.
What are your traditions around Thanksgiving? What we eat and how we celebrate Thanksgiving depends on where we live, our ethnicity, and our family traditions. What matters is coming together and remembering to be thankful. Brooke Abbott of The Crazy Creole Mommy Chronicles and IBD Moms tells me about some of her family’s Thanksgiving traditions and how she talks about being grateful with her son. We discuss some of the ways we try to support the IBD community and what we can do better, especially during the hectic and stressful holiday season. Plus, see the end of the show notes for some of Brooke’s recipes!
Inflammatory bowel disease (IBD) tends to run in families but it’s not as simple as being passed down from parent to child. It’s more complicated because of the number of genes that are involved and the fact that it’s the genes plus some “trigger” that starts the disease process. In fact, many people with IBD don’t have a family history of the disease. Even so, it’s worth digging into family history in order to learn if there’s more IBD or immune-mediated conditions in the family.
Dating can be challenging for anyone at any stage in life, but having IBD and/or other chronic conditions adds another level of difficulty that can be disconcerting. Angela Cohen was diagnosed with Crohn’s disease after her intestine perforated. Her long-term relationship ended not long after and she was thrust into the dating world. What she discovered while going on more than a few “first dates” was illuminating not only about how IBD and other autoimmune conditions are perceived by potential partners but also about herself and what she wants to get out of dating, as well as her life goals. Continue reading
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.