Surviving out of Spite

What happens when gastroparesis or chronic GI symptoms become an emergency, but the ER doesn’t understand what you’re experiencing?In this episode of Surviving Out of Spite, Sam talks with ER physician Dr. Rick Pescatore about gastroparesis, chronic abdominal pain, nausea, vomiting, dehydration, and emergency room care. They discuss why chronic GI patients may feel dismissed or misunderstood in the ER, even when symptoms are severe.They also get practical: How do you advocate for yourself in the ER? What should you bring to the hospital? How do you explain your baseline and symptom changes? What do you do when a doctor isn’t listening?This conversation covers ER advocacy, chronic illness, patient-provider communication, shared decision-making, and how patients and emergency physicians can work together.If you live with gastroparesis, IBS, chronic abdominal pain, nausea, vomiting, cyclic vomiting, or another gut-brain disorder, this episode is for you.And if you've ever sat in an ER thinking, “They don't believe me,” you're not alone.Here’s a link: https://belly-md.com/pages/menome-code for a code that gets our G-PACT community 6 months of MeNome Premium, free. Tap “That’s me” next to the G-PACT line, drop in an email, and the code appears right on the page. Copy it and it takes you straight into signup.

What does it really mean to build strength in a hypermobile body? In this episode, Sam sits down with Heidi Pasch, a hypermobility-informed personal trainer and contortionist, for an honest and empowering conversation about hypermobility, EDS, strength training, rehabilitation, chronic pain, and safe movement.

For people living with Ehlers-Danlos syndrome (EDS), hypermobility, or chronic illness, exercise and movement can come with unique challenges. Heidi shares her experience and expertise on how to approach training in a way that prioritizes muscle health, injury prevention, stability, body awareness, and long-term strength rather than simply pushing for more flexibility.

They also challenge some of the common misconceptions surrounding hypermobility and flexibility. Being flexible doesn't necessarily mean your body is stronger or healthier, and for some hypermobile people, excessive flexibility can create additional challenges with stability and injury risk. The conversation looks at why slow, deliberate, personalized movement can be so important when training a hypermobile body.

Beyond physical training, Heidi discusses the mental shift that can come with chronic illness and disability, including body acceptance, body positivity, and moving away from society's constant focus on weight and appearance. They talk about how changing the way we think about our bodies can help people feel more empowered in their movement and rehabilitation journeys.

https://www.heidipasch.com/shop

https://www.heidipasch.com/training-for-hypermobility-and-joint-stability

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.

Want to connect with Deanna?

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Deanna Steinle | LinkedIn

Resilience is Beautiful Facebook Page

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.

What does it really take to create a documentary about chronic illness?

In this episode, Sam sits down with Lauren Keenan, Director of the film, to take you behind the scenes of this powerful chronic illness documentary. Together, they discuss the creative process, the emotional realities of filmmaking, and the deeply personal journey of telling authentic patient stories that capture life beyond a diagnosis.

From half-marathon training while living with chronic illness to navigating setbacks, vulnerability, and resilience, Sam and Lauren share what it takes to create a documentary that is both honest and impactful. Their conversation explores how storytelling can change perceptions of gastroparesis, invisible illness, or chronic pain, while highlighting the strength and humanity of the chronic illness community.

Creating a documentary about chronic illness is about far more than capturing footage; it's about building trust, embracing uncertainty, and giving patients the opportunity to tell their stories on their own terms. Sam and Lauren discuss the challenges of balancing filmmaking with chronic illness, why understanding your "why" is essential during difficult moments, and how authentic storytelling can educate, inspire, and create meaningful change.

If you're passionate about chronic illness awareness, patient advocacy, or documentary filmmaking, this episode offers a unique behind-the-scenes look at how these powerful stories are brought to life.

What does it really take to tell an authentic story about chronic illness?

In this behind-the-scenes conversation, Sam sits down with Joe Keenan to discuss the creation of Chronic Life Media and the documentary that captures the realities, resilience, and humanity of people living with chronic illness. From the first concept to filming, editing, and planning for film festivals, they share what audiences don't see, and why authentic storytelling matters.

Living with a chronic illness is about so much more than symptoms. This episode explores how powerful stories can help break stereotypes, build empathy, and remind the world that patients are complex individuals with dreams, goals, relationships, and lives beyond their diagnoses.

Whether you're living with gastroparesis, a different chronic illness, or supporting someone who is, this conversation offers an honest look at the power of sharing our stories and the impact authentic representation can have.

If you've ever wondered what goes into creating a documentary about chronic illness, or why these stories matter, this episode is for you.

Why is gastroparesis so difficult to diagnose and treat? In this episode, Sam chats with gastroenterologist Dr. Aditi Stanton to discuss the realities of living with and treating gastroparesis, one of the most challenging digestive disorders.

Dr. Stanton shares why gastric emptying studies don't tell the whole story, the biggest gaps in gastroparesis care, and why nutrition, patient advocacy, and strong communication between patients and providers are essential for better outcomes. They also talk about treatment approaches, the role of GI psychologists, stress and the gut-brain connection, and why managing chronic digestive diseases requires a personalized, multidisciplinary approach.

Whether you're living with gastroparesis, chronic nausea, vomiting, early satiety, or other GI motility disorders, this conversation offers practical insights from both the physician and patient perspectives.

Can patients trust AI with their healthcare decisions? And who should be responsible when technology becomes part of the diagnostic process?

In Part 2 of this conversation, Sam and Erika from IncitefulMed dive deeper into the complex relationship between artificial intelligence, healthcare, trust, and patient advocacy. As AI becomes increasingly integrated into medicine, patients are faced with important questions about privacy, transparency, accuracy, and who ultimately controls their health information.

Erika shares some insights on the role AI can play in helping patients understand symptoms, medical research, and treatment options while emphasizing the importance of context, critical thinking, and human oversight. Together, they explore why there is often a gap between medical research and real-world clinical practice, and how technology can help bridge that divide.

This discussion also tackles healthcare incentives, pharmaceutical influence, monetization within health technology, and the challenges patients face when trying to determine which tools and sources of information are truly trustworthy. For those living with chronic illness or rare diseases, access to accurate information can be empowering, but understanding where that information comes from is just as important.

Together, they have an honest conversation about the future of AI in medicine, the importance of transparency in healthcare technology, and how patients can become stronger advocates for themselves in an increasingly digital healthcare landscape.

What happens when culture, bias, trauma, and chronic illness intersect?

In this episode of Surviving Out of Spite, Sam sits down with patient advocate and non profit leader Tina Aswani-Omprakash to chat about her journey living with Crohn’s disease, gastroparesis, and other GI conditions. Tina shares how cultural expectations, healthcare biases, and how unfortunate medical trauma shaped her experiences as a South Asian woman navigating the healthcare system.

Together, they talk about the importance of shared decision-making, culturally sensitive care, and the need to create safe spaces where patients feel seen, heard, and supported. They also talk about the stigma surrounding GI conditions, the role of intergenerational trauma, and why trust between patients and providers is essential for healing.

The conversation dives into food and cultural identity, the challenges of restrictive diets, and the importance of finding dietitians and healthcare professionals who understand diverse backgrounds. Sam and Tina highlight the power of community, vulnerability, and advocacy in breaking down stigma and empowering patients living with chronic digestive diseases.

Whether you're living with Crohn’s disease, gastroparesis, IBD, or another chronic illness, this episode offers hope, validation, and practical insights on navigating healthcare while honoring your identity and lived experience.

Links mentioned in the podcast episode:

https://ownyourcrohns.com/

https://saia-gi.org/

How can patients use artificial intelligence to better understand their health, and should they trust it?

In Part 1 of this conversation, Sam chats with Erika Warren, founder of InsightfulMed, to discuss AI literacy in healthcare and how technology can help patients become more informed advocates for their own care.

Many patients struggle to understand medical records, test results, research studies, and complex healthcare information. Erika shares how InsightfulMed was designed to help bridge that gap by making health information more accessible, understandable, and actionable for patients navigating chronic illness, rare disease, and complex medical conditions.

Together, Sam and Erika talk about the growing role of AI in healthcare, how patients can use technology to ask better questions, and why health literacy is one of the most important tools for improving healthcare outcomes. They also discuss healthcare data privacy, user control, and the importance of transparency when using digital health tools.

Whether you're living with a chronic illness, caring for a loved one, or simply interested in the future of healthcare technology, this episode offers practical insights into how AI can empower patients while protecting trust and privacy.

More info on Inciteful Med: https://incitefulmed.com/

In this episode of Surviving Out of Spite, Sam chats with Amber Tresca of AboutIBD to discuss the realities of living with inflammatory bowel disease (IBD), gastroparesis, and other chronic health challenges. Amber shares her personal journey with J-pouch surgery, navigating life after major medical interventions, and learning how to balance work, health, and personal growth.Sam and Amber talk about the emotional and practical aspects of chronic illness, including managing unpredictability, building supportive communities, protecting mental health, and finding resilience during difficult seasons. They discuss the importance of flexibility, radical acceptance, and creating a life that works with your condition rather than constantly fighting against it.Whether you're living with IBD, gastroparesis, a chronic illness, or supporting someone who is, this conversation offers honest insights, encouragement, and practical wisdom for navigating the ups and downs of long-term health challenges.Where to find more from Amber? IG: @aboutIBDYT: @aboutIBDWeb: www.aboutIBD.comEmail: amber@aboutibd.com

In this episode of Surviving Out of Spite, Sam sits down with Dr. Sarah Cohen Solomon for a deeply honest conversation about chronic illness, Ehlers-Danlos Syndrome (EDS), and what it really takes to build a more humane healthcare system.

Dr. Solomon brings a unique dual perspective as both a physician and a patient, offering insight into the lived reality of navigating chronic illness while practicing medicine. They talk about the complexities of individualized care, the importance of listening to patient concerns, and why curiosity, not assumptions, should guide clinical decision-making.

This episode is about shifting healthcare toward collaboration, where patients are not dismissed, but believed, supported, and involved in their own care decisions. It’s a call for a more compassionate, responsive, and patient-centered medical system.

If you’re living with chronic illness, supporting someone who is, or working in healthcare, this conversation offers grounded insight into how care can be improved through empathy, advocacy, and listening.