Surviving out of Spite

Ulcerative colitis, chronic illness, mental health, and self-advocacy — this episode of Surviving Out of Spite gets real about what it’s actually like living with an unpredictable chronic illness.

Sam talks with Jesse about his ulcerative colitis (UC) diagnosis, severe symptoms and flares, bowel accidents, travel, mental health, stress, and the challenges of navigating life with IBD (inflammatory bowel disease). They also discuss chronic illness self-advocacy, toxic positivity, support from friends and family, finding community, and celebrating small wins.

Jesse shares how his experience with ulcerative colitis ultimately led him into chronic illness advocacy and why having a support system can make such a difference when you're living with an invisible illness.

If you live with ulcerative colitis, Crohn’s disease, IBD, gastroparesis, or another chronic illness, this conversation is a reminder that you are not alone, and you don't have to navigate it alone.

Living with gastroparesis can affect far more than digestion. It can change your relationship with food, your body, clothing, relationships, work, and even your sense of identity.In this episode of Surviving Out of Spite, Sam sits down with Dr. Erica Agudo to talk openly about the realities of living with gastroparesis and chronic illness, both personally and professionally. Erica shares her experiences navigating unpredictable symptoms, dietary challenges, relationships, and the emotional impact of living with a condition that is often misunderstood.The conversation also explores the complicated relationship between gastroparesis, body image, food, and disordered eating. For people living with chronic digestive illnesses, eating and nutrition can become complicated by nausea, vomiting, food intolerance, dietary restrictions, weight changes, and the need to constantly adapt to symptoms. Erica and Sam discuss how these experiences can affect self-perception, clothing choices, confidence, and mental and emotional well-being.Erica also discusses her research into women's experiences with gastroparesis and why patient voices are essential to improving understanding, healthcare, and advocacy. They talk about the stigma surrounding gastroparesis, the importance of finding community, self-advocacy, and why sharing lived experiences can help patients feel less isolated.If you live with gastroparesis, chronic illness, digestive disease, or disordered eating, or you support someone who does, this conversation offers an honest look at some of the experiences that can be difficult to explain to people who don't live them.Your story matters. Your experience matters. And you are not alone.Subscribe to Surviving Out of Spite for honest conversations about gastroparesis, chronic illness, patient advocacy, medical experiences, relationships, mental health, and finding ways to keep going when your body doesn't cooperate.Interested in the journal? Click here: https://a.co/d/09nzOEhL

What happens when gastroparesis makes eating and drinking enough nearly impossible? When do feeding tubes or TPN become part of treatment?In this episode of Surviving Out of Spite, Sam sits down with Dr. Kent Sasse, a surgeon with decades of experience treating gastroparesis, to talk about nutritional support, feeding tubes, TPN, and the realities of living with severe gastroparesis.Most importantly, this conversation challenges the idea that nutritional support is a “last resort.” For some patients, it can provide the nutrition, strength, and stability needed to get back to living life.Disclaimer: This podcast is for educational and informational purposes only and is not a substitute for medical advice.

Are we treating gastroparesis all wrong?In this conversation, Sam and Dr. Zachary Spiritos explore the complexities of gastroparesis, chronic illness, autoimmune disease, dysautonomia, and the gut-brain connection, and why treating gastroparesis may require looking beyond a gastric emptying test.They chat about the limitations of gastric emptying studies, the wide range of gastroparesis symptoms, and the importance of understanding potential underlying causes. They also explore how autoimmunity, dysautonomia, stress, and the nervous system can interact with gastrointestinal health.The conversation goes beyond diagnosis and treatment to address patient advocacy, compassionate care, medical research, gender bias, and the importance of listening to patient experiences. They discuss why better communication between patients and healthcare providers and a more curious, holistic approach to chronic illness is so important.

If you live with gastroparesis or chronic illness, this conversation offers an important look at why the whole patient matters.

Living with chronic illness can affect far more than your physical health; it can change your identity, relationships, mental health, and sense of connection.In this episode of Surviving Out of Spite, Sam sits down with psychotherapist and fellow patient Jodi Taub to discuss the emotional realities of chronic illness, medical trauma, mental health, and relationships.They explore isolation, feeling like a burden, the “shame-burden cycle,” asking for help, communicating your needs, and supporting loved ones through chronic illness. They also discuss medical trauma, changes in identity, peer support, coping strategies, therapy, and the possibility of post-traumatic growth.Most importantly, this conversation looks at how relationships, connection, meaning, and purpose can help us navigate life when illness makes everything unpredictable.If you live with gastroparesis or another chronic illness, or support someone who does, this conversation offers validation, perspective, and practical insight into the emotional side of chronic illness.Would you like to learn more about Jodi and her practice? Click below!https://www.joditaubtherapy.com/Interested in Jodi's book? Click the link below!https://a.co/d/0hKrCKAJ

Living with chronic illness can change everything; including how you see yourself, your future, and your place in the world.

In this conversation, Sam and Deanna dive into the realities of living with chronic illness and rare disease, exploring how diagnosis can reshape identity, mental health, relationships, and everyday life. They talk about the ongoing process of understanding an illness, adapting to a life you didn't necessarily choose, and finding strength in the uncertainty.

They also discuss the importance of community, patient advocacy, resilience, and sharing your story; and how connecting with others who truly understand can make chronic illness feel a little less isolating.

If you're living with chronic illness or rare disease, we hope this conversation reminds you that your experience matters, and that there is power in finding people who understand.

Don't forget to like, subscribe, and share this video to help connect more patients, caregivers, and advocates with the chronic illness community.

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Finding a protein source that works with a sensitive digestive system can be challenging. In this episode, Jack, founder of Drink Wholesome, shares the story behind creating a protein powder designed for people who struggle with digestive issues, food sensitivities, and dietary restrictions.Sam and Jack discuss why many traditional protein powders can be difficult to tolerate, the importance of simple ingredients and minimal processing, and how listening to customer experiences helped shape the evolution of Drink Wholesome’s products. From early product development challenges to creating new flavors designed with specific needs in mind, this conversation explores the future of more personalized nutrition.For many people living with chronic digestive conditions, nutrition is about more than just choosing healthy foods; it’s about finding options that their bodies can tolerate.

What’s new with Zenowell taVNS? In this episode of Surviving Out of Spite, Sam sits down with Jane to explore the latest Zenowell device and app updates, including the brand-new Digest Mode and Focus Mode; and what these features could mean for people living with gastroparesis, digestive symptoms, stress, and gut-brain health.Jane shares a behind-the-scenes look at how these new features were developed, how patient and user feedback influences Zenowell’s ongoing innovation, and how breathing techniques have been incorporated into the app to support relaxation, concentration, and nervous system regulation.They also chat about the new Mobi Band, how wearable health technology can help collect more comprehensive data, and how integrating information from multiple health devices could eventually provide users with a more complete picture of their health.

Cyclic Vomiting Syndrome (CVS) is more than just “vomiting.” It is a debilitating GI disorder that can cause intense, recurring episodes of violent vomiting, emergency room visits, hospitalizations, dehydration, malnutrition, and a devastating impact on daily life. Yet many patients and families face years of searching for answers, misdiagnosis, stigma, and the painful experience of not being believed.

In this episode of Surviving Out of Spite, Sam sits down with Blynda, President of the Cyclic Vomiting Syndrome Association, to discuss the reality of living with CVS and the challenges families face when navigating the healthcare system. Blynda shares her son’s journey with cyclic vomiting syndrome and abdominal migraines, including the struggles of getting a proper diagnosis, finding knowledgeable providers, and advocating for compassionate medical care.

Together, they talk about the connection between CVS and migraines, the trauma many GI patients experience in emergency rooms, the harm caused when patients are dismissed or accused of exaggerating symptoms, and why advocacy and awareness are critical for rare and misunderstood conditions.

Could Parkinson's disease begin in the gut? Emerging research suggests the connection between the gut and brain may be much stronger than we once believed.In this episode, Sam talks with Dr. Trisha Pasricha to explore the relationship between Parkinson's disease, gastroparesis, constipation, and other gastrointestinal disorders. Together, they discuss how digestive symptoms often appear years before neurological symptoms, why dopamine plays an important role in both the brain and the digestive tract, and what researchers are learning about the gut-brain axis.Dr. Pasricha explains why many people living with Parkinson's struggle with delayed gastric emptying, constipation, nausea, and other GI symptoms that can significantly impact quality of life. She also shares why treating digestive symptoms can be especially challenging, how specialists approach care, and what promising research may mean for future treatments.The conversation also dives into the importance of multidisciplinary care, the benefits of pelvic floor therapy, patient advocacy, and why understanding the whole body is essential when managing chronic illness.