The inflammatory bowel diseases (IBD) can make people feel powerless and isolated. Participating in day on the Hill events in Washington DC with patient advocacy groups are one way to take back control and have your voice heard by those who can help affect change. Hear from Jaime Holland of Pretty Rotten Guts, who describes her experiences in lobbying on Capital Hill including why it’s important to her, how she navigates the day with mobility issues, and why the experience is empowering.
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Improving the quality of life for people with inflammatory bowel disease (IBD) takes commitment and focus to understanding the issues affecting patients and caregivers. Real change means engaging with all stakeholders, including physicians, industry, and government, as well as patients and caregivers. A future that includes more effective treatments and compassionate care for those touched by IBD will only happen when those who have the best interests of patients at heart take their seat at the table. There are many activists in the IBD community that are doing this hard work and you can strengthen their achievements by amplifying their voices.
What’s new in inflammatory bowel disease (IBD) treatments and what’s next on the horizon? Dr Peter Higgins, a gastroenterologist, IBD specialist, and researcher at the University of Michigan discusses what’s new in IBD from the Crohn’s and Colitis Congress meeting in 2019. We talk fecal transplants, healing strictures in the intestines, and the feasibility of custom ostomy products. It’s a conversation about cutting edge research on Crohn’s disease and ulcerative colitis mixed with the practicality of using these treatments in the real world.
Does having IBD make you feel like a princess? Crohn’s disease and ulcerative colitis are not only painful, serious conditions, but they also carry stigma which leads to patients feeling isolated. Sophia Vicari, the founder of The Princess Promise, is creating a community that challenges the perception society has about digestive disease. Diagnosed with ulcerative colitis while in college, it didn’t take long before Sophia decided she needed to work to help others in the IBD community become more comfortable talking about poop. Hear Sophia’s disease journey, what it was like for her to be Miss Camden County, NJ, while living with ulcerative colitis, and how she plans to help women with IBD find their inner princess.
Every person that lives with Crohn’s disease or ulcerative colitis in the United States knows the challenges of dealing with health insurance companies. Denials of service are common, particularly when diagnostic tests are ordered or when a new drug is prescribed. A change in insurance carrier, which can come after a life event (such as getting married or changing jobs) or at the start of the calendar year is another time when patients may find themselves in the appeal process in order to get needed tests or medication. For Jaime Holland, a life change, an insurance change, a calendar year change, and a change in gastroenterologist culminated in her being in danger of not receiving her biologic medication on time. Hear Jaime tell the story of how the problem started, why she had to look to someone outside her physicians office and her insurance carrier to get it solved, and her tips to help you avoid similar insurance snafus. This episode is perfect not only for anyone living with inflammatory bowel disease (IBD) but also anyone who cares for those living with these diseases.
Many young people who are undergoing ileostomy surgery to treat Crohn’s disease or ulcerative colitis have never met another younger person with an ostomy. Gaylyn Henderson, founder of Gutless and Glamorous, wants to make sure that people living with inflammatory bowel disease (IBD) don’t experience the uncertainty and stigma that she encountered before her ostomy surgery. In between running a successful foundation and a support group for people with chronic illness, Gaylyn has also become a spokeswoman for people with an ostomy, proving that her ileostomy is not a barrier to success.
I was fortunate to see The Matrix on its first run in theaters when it came out on March 31, 1999. We knew little about the movie at the time, just that it was science fiction and it looked amazing and that we would want to see it on the big screen and not later on VHS (DVD was not yet mainstream). The movie came out only a few weeks after my first of two surgeries to create my j-pouch (or IPAA, ileal pouch-anal anastomosis) to treat ulcerative colitis (which is one form of inflammatory bowel disease, or IBD).
I love The Matrix, and how could I not? It contains so many narrative aspects I enjoy, including science fiction, robots taking over the world, an unconventionally beautiful and lethal female character, and a kick-ass soundtrack. To be honest, there are a lot of things about the plot that don’t hold up to serious scrutiny. But that’s fine, it is still amazing and undeniably groundbreaking in both storytelling and technical aspects.
When The Matrix opens, the watcher has no idea what is going on. This is my favorite way to be pulled into a story: absolutely cold, with no frame of reference. There’s no exposition and the narrative plunks you right into this universe that works differently than the one you know. You have to make a decision right then and there, if you are all in and if you’re ready for the filmmakers to take you on the ride and teach you about their world. For me, it was my first time being out of the house and enjoying myself after having surgery, and I was so ready.
(Mild spoilers for The Matrix are contained in this article, so if you haven’t seen it, or haven’t seen it lately, go watch it now. I mean, how can you exist in the world and understand what other people talk about without having seen it?)
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.
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.
This is the second week of my attempts at meditating on a regular basis. I fail, of course. But I also succeed. At some point I know a regular meditation is supposed to be something to look forward to, like a good meal or the perfect cocktail. However, I’m still struggling to fit it into my day and not to see it as another box that needs to be checked along with other items like taking my medication and returning phone calls (two things I also fail at almost daily). There’s a host of issues that come up in the second week of this experiment, most of which don’t have any answers.
Remember, this is my journey and no one should take my missteps as absolution from trying meditation. I’m still going to recommend that everyone try it. Continue reading →