GBM Team – The Great Bowel Movement

If Remission is the Goal, Why Do I Still Feel Bad? [Guest Post]

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Originally posted as part of the Experts by Experience series presented by Mayo Clinic and Inspire.com By Megan Starshak | Original publish date: July 19, 2019 Everyone always talks about being sick. My life took an unexpected turn after I was diagnosed with inflammatory bowel disease (IBD). I was lost, trying to navigate the nature of this new disease, this new identity, in a new college where no one seemed to understand. So, when I found a community of patients, I finally felt like I had others fighting alongside me—I found direction. Finding my place within the community changed my whole world. It felt as if a weight was lifted off me, not having to explain the nuances of life with a chronic illness. My community believed me, they knew my journey because they were on the same one. It was a safe and supportive space to talk about all the challenges and complexities of IBD. We talked about everything—but everything revolved around being...

From the Hospital to the Big Screen: Derek and the Crohnie Movie

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From the Hospital to the Big Screen: Derek and the 'Crohnie' Movie A conversation with Derek Mari Recently, we had the chance to chat with Derek Mari about his diagnosis of Crohn's disease, why he fights so hard against stigma and shame, and how he's bringing this story (hopefully) to a really, really large audience - through a full-length film. Follow along with what he had to share: GBM: Let's start at the very beginning - your diagnosis story. Derek: I grew up in Modesto, CA, and was originally diagnosed with ulcerative colitis at the age of 15. It happened after about a year of dealing with symptoms, and so so much Tylenol. Although I finally received that diagnosis, it still felt like a mystery. I didn't really understand the problem, only that I was in a ton of pain and wanted it to stop. I eventually moved to Los Angeles to go to film school, and I started seeing a gastroenterologist at UCLA. My diagnosis...

We Are Living In A Time of Great Empathy

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“Empathy is the only human superpower: it can shrink distance, cut through social and power hierarchies, transcend differences, and provoke political and social change.” -Poet Elizabeth Thomas We Are Living In A Time of Great Empathy Understanding leads to Empathy There is hardly an IBD patient out there that hasn't struggled with being misunderstood. We've all tried to explain what our diseases, and lives, are like, only to be met with some combination of disgust, pity, or aversion. Or maybe it was a well-intentioned effort at support, a suggestion to drink more tumeric tea, or a misaligned attempt to relate, with the story of that one time they ate a bad meal. As we work towards a greater understanding of the real, complex, and often changing lives we live with IBD, we also work towards more empathy. After all, the more others understand, the more they can support us in the right ways, fight on our side, and empathetically just be present when there's nothing...

On Ten Years, in 2020

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"A long December and there's reason to believe maybe this year will be better than the last." -Counting Crows On Ten Years, in 2020 In the midst of everything that was 2020, we missed the fact that The Great Bowel Movement turned 10 years old. Ten. A whole decade. We’ve grown up, we’ve watched the community evolve, and we’ve been witness to a changing IBD conversation across the emergence and growth of various platforms. We’ve taken a moment to reflect on what’s changed, what’s stayed the same, and everything that is the anomaly of life in 2020. This is a long (but important, we think) one, so here's what we're talking about: Our Origin Story The Conversation Has Evolved with Technology The Grassroots Stories are Still Incredibly Impactful There Has Been A Shift in Power to Patients Clinical Trial Participation is Critically Important Diversity and Inclusion are (Finally) Top Priorities 2020 Made Us Show Up Our origin story revolves around our time at the Crohn’s and Colitis Foundation’s Camp Oasis, and the...

Adventures with an Ostomy

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Adventures With An Ostomy Guest Post by Abbey Corbett Life. Life. It’s a beautiful thing. It’s unpredictable. It’s exciting. It’s maddening. It can change in the blink of an eye. The year was 2009. I was sitting with one of my roommates at college when something caught my eye on the muted TV screen. It was a photo of a stunning young woman in a black bikini confidently showing off her ostomy bag. I was immediately drawn to the story because as someone who had been diagnosed with Crohn’s disease at the age of 8, I knew that a bag was almost guaranteed to be in my future. When I pictured it though, I pictured it 20, maybe 30 years in the future after I’d been married and maybe had a few children. After I had been able to get as much out of life as possible. Sudden Turns When You're Not Ready Fast forward 8 years later, I found myself sitting in my doctor’s office...

“It’s Not Helpful When You Say That”

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"I can totally relate, I once had [thing]" -Anyone who finds out you have an autoimmune disease "At least it's not cancer" -Also anyone who finds out you have an autoimmune disease It's Not Helpful When You Say That No one knows how to talk to you about being sick. Especially as you are just entering life with disease, or processing a new diagnosis, you'll often find that 'real talk' is bypassed for a combination of pity, fluffy encouragement, unsolicited advice, and even some WTF moments. We like to think that most of this is well-intentioned (although unfortunately not all) but it often misses the mark because those around you are afraid to, or simply don't know how to talk to a sick person about being sick. Learning to guide the narrative means, in simpler terms, telling people how to have conversations with you. It takes learning on both sides, and it's something I wish I would have recognized and embraced earlier on in my disease...

When Your Cup Is Almost Empty

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"You can't pour from an empty cup." -Norm Kelly Whatever lessons we've learned about self-care, community care, and compassion fatigue have been amplified by the 2020 global pandemic. The stress and anxiety, the loneliness, the mental effort it takes to process, and the unknown finish line have been brought to the surface for not just chronic illness patients, but most everyone in the land. I've been in a comfortable place with my own IBD for some time now, and I've stated repeatedly that when you're in remission, it's your opportunity (if not obligation) to give back to those who are where you once were. After all, when I was disastrously sick, navigating a new diagnosis, and learning to live a life incurable, I took what I needed, and I found it from those who were so able to give, even when I had nothing to return at the time. Now that we're collectively experiencing a similar-but-also-way-different health crisis, I've found myself on both sides...

Pack Health For IBD – Patient Health Coaches

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As a patient of Inflammatory Bowel Disease, have you ever felt lost? What a ridiculous question. We've all felt lost at one time or another. Managing the chronic illness experience is confusing, time consuming, exhausting, and certainly doesn't come with a guidebook. When we recently heard about Pack Health and their entrance into the IBD space, we were extremely excited to see someone else recognize this gap - this need for a guide - and put together a program that actually works to do it successfully. Pack Health works with IBD and other chronic illness patients to be strong partners in the patient experience. The program works by matching you with an expert that's educated and experienced in navigating the specific challenges of IBD, and they do it at a professional level, so they can be trusted to provide reliable and accurate resources. This health coach connects you as a patient, to all the points you manage, and helps you get it all...

HealtheVoices5

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HealtheVoices 5: A Little Heart Can Do Big Things We were honored to have attended the #HealtheVoices19 conference: A Little Heart Can Do Big Things. At some point (or probably many points, the conference was a blur!) I was asked, as a first year advisor, how HealtheVoices has changed since its inception. It took me a while to figure out how to respond to this, because honestly, there are so many things, and growth like this takes time to absorb. The first year was like a good first date. We knew there was potential, we had an idea of what we wanted, but we just needed to figure out how to build up. Year two saw some growth and familiarity come into play. By year three, we had found our groove, and from there, a really, really good thing just became greater and greater. The faces that have experienced, and contributed to, HealtheVoices over the years have brought in some different perspectives, and...

GBM’s Buttload of Prizes Giveaway!

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Thanks for stopping by. This sweepstakes is now closed. Thank you for being a part of our IBD community. We’re celebrating reaching 10,000 Facebook fans with our Buttload of Prizes Giveaway! You can earn up to 4 sweepstakes entries by responding to prompts on the social network of your choice. But first, check out this amazing prize pack! Check out the IBD Prize Pack One winner will be randomly chosen to receive this ENTIRE ridiculously awesome haul. Two additional winners will be randomly chosen to receive $50 Amazon gift cards. By the way, most of the prizes here were generously donated to this prize pack. To help say 'thanks', please consider supporting these companies through purchases and social engagement! Winners will be chosen on Dec 21, 2018. I Heart Guts Plush Intestines We don’t even have to say anything about how awesome I Heart Guts is. Their intestines plush is a must-have for IBD patients, because, well, we can’t think of a single reason not...