IBS Chat Episode 15: My IBS story and advocacy journey as told to Tuft’s University School of Medicine Students

Mahana IBS is a new FDA-cleared clinically proven digital treatment app that uses Cognitive Behavioral Therapy (CBT) to reduce IBS symptom severity. Manaha reports that nearly 2 in 3 patients using Mahana IBS find relief for their IBS symptoms. My guest was Dr. Luisa Scott who is the Director of Medical Affairs at Mahana. We learn what Medical Affairs do for an organization and how CBT - Cognitive Behavioral Therapy, acts on the brain-gut-axis to manage IBS symptoms. Dr. Scott describes the research which supports a digital CBT program for IBS and whether this approach is right for everyone. Patients of course need to talk to their healthcare provider and receive a prescription in order to gain access to the digital app. For more information about Mahana IBS visit https://www.mahana.com/treatments/ibs Find Jeffrey Roberts and IBS Patient Support Group at: Website: https://www.ibspatient.org Facebook: https://www.facebook.com/groups/ibspatient Twitter: https://twitter.com/ibspatient Instagram: https://www.instagram.com/ibspatient  Music: Werq Kevin MacLeod (incompetech.com) Licensed under Creative Commons: By Attribution 3.0 License http://creativecommons.org/licenses/by/3.0/

Jeffrey Roberts, Founder IBSpatient.org, had the opportunity to share his IBS story and advocacy journey with first year medical students at Tuft’s University School of Medicine. He was interviewed by Dr. Libby Bradshaw, Patient Experience Threads Director and Assistant professor, Public Health and Community Medicine. Dr. Bradshaw’s session with the students was to focus on the patient experience of IBS and abdominal pain. Jeffrey was very pleased to share his early years of being diagnosed and how he began becoming a patient advocate. He also touched on his IBD diagnosis later in life and how IBS and IBD are different for him. They spoke about the stigma that IBS patients encounter from family and the medical community as well as a doctor’s perspective and what Jeffrey believes is important for medical students to know. Find Jeffrey Roberts and IBS Patient Support Group at: Website: https://www.ibspatient.org Facebook: https://www.facebook.com/ibspatient Twitter: https://twitter.com/ibspatient Instagram: https://www.instagram.com/ibspatient  Music: Werq Kevin MacLeod (incompetech.com) Licensed under Creative Commons: By Attribution 3.0 License http://creativecommons.org/licenses/by/3.0/

Ernie Molina is someone who developed IBS after a being placed on antibiotic therapy by his dentist for 6 months after dental implants. His dentist felt that Ernie’s gut discomfort could be managed by eating yogurt. This did not work for Ernie. Before the dental work, Ernie described his health as good and enjoyed a wide variety of foods. This all changed following the antibiotics. Fortunately Ernie’s wife Mary had developed a bar which had few ingredients due to their daughter Lola needing a gentle snack food. When probiotics were added to the bar, Ernie began to return to a normal life. That’s when the Lola Snacks Probiotic Energy Bar took off. In my conversation with Ernie and Mary Molina, Ernie tells his story when and how he was diagnosed with IBS and how he felt after eating the Lola Snacks bars. Mary shares details about how the bar was developed and plans for the future including wide distribution of the bar and an interest in a research clinical trial to understand why Lola Snacks bars eased Ernie’s IBS symptoms. You can find our more information about Lola Snacks at https://lolasnacks.com/ Find Jeffrey Roberts and IBS Patient Support Group at: Website: https://www.ibspatient.org Facebook: https://www.facebook.com/ibspatient Twitter: https://twitter.com/ibspatient Instagram: https://www.instagram.com/ibspatient  Music: Werq Kevin MacLeod (incompetech.com) Licensed under Creative Commons: By Attribution 3.0 License http://creativecommons.org/licenses/by/3.0/

Dr. Mark Pimentel is a professor of medicine and gastroenterology at Geffen School of Medicine UCLA and associate professor of medicine at Cedars-Sinai Medical Center, Los Angeles. He is also the executive director of the Medically Associated Science and Technology (MAST) Program at Cedars-Sinai, https://csmast.com. A pioneering expert in irritable bowel syndrome (IBS), Dr. Pimentel's research led to the first-ever blood tests for IBS, https://ibssmart.com. Dr. Pimentel has served as a principal investigator for numerous clinical investigations of IBS and the relationship between gut flora composition and human disease. Dr. Pimentel is a diplomate of the American Board of Internal Medicine, a fellow of the Royal College of Physicians and Surgeons of Canada, and a member of the American Gastroenterological Association, the American College of Gastroenterology, and the American Neurogastroenterology and Motility Society. Pam Emmer is a GI motility patient who has overcome SIBO, small intestinal bacterial overgrowth. She has been a patient advocate, fundraiser and cheer leader for Cedar Sinai Medical Center in LA and the Mast Program for almost 10 years. Pam and I met with Dr. Pimentel at DDW 2023 in Chicago where we spoke about intestinal methane overgrowth, how to use prokinetics, motility and pooping - what's the difference, biomarkers for malabsorption and its relationship to SIBO and upcoming clinical trials for the MAST program.  Find Pam Emmer at: Website: https://lifeaftersibo.com Facebook: https://www.facebook.com/pamslifeaftersibo Twitter: https://twitter.com/lifeaftersibo Instagram: https://www.instagram.com/lifeafter_sibo Find Jeffrey Roberts and IBS Patient Support Group at: Website: https://www.ibspatient.org Facebook: https://www.facebook.com/ibspatient Twitter: https://twitter.com/ibspatient Instagram: https://www.instagram.com/ibspatient  Music: Werq Kevin MacLeod (incompetech.com) Licensed under Creative Commons: By Attribution 3.0 License http://creativecommons.org/licenses/by/3.0/

Johannah Ruddy MEd, is the Executive Director of the ROME Foundation and a patient advocate. Johannah works to provide the patient perspective to everything that she does. She recently co-wrote and published the book Gut Feelings: Disorders of Gut Brain Interaction which is a guide for patients and doctors. Johannah and I got together to discuss our own experiences related to “What I Wish Someone had Told me About IBS”. We discuss how patients aren’t alone and how you can gain information from others. We believe that the stigma about talking about IBS might be decreased if people were more open about suffering with it. Not everyone has the answers so it’s important to leverage your relationship with your doctor and to question treatment options. Be positive things will get better! Find Jeffrey Roberts and IBS Patient Support Group at: Website: https://www.ibspatient.org Facebook: https://www.facebook.com/ibspatient Twitter: https://twitter.com/ibspatient Instagram: https://www.instagram.com/ibspatient  Music: Werq Kevin MacLeod (incompetech.com) Licensed under Creative Commons: By Attribution 3.0 License http://creativecommons.org/licenses/by/3.0/

Natalie (Sparacio) Hayden is an Inflammatory Bowel Disease patient advocate who was diagnosed with Crohn’s disease in 2005, She is a Mom of 2 beautiful children, with one more on the way. She is a former TV news anchor and reporter so she has had a very active life. Her blog is LightsCameraCrohns.com where she publishes weekly articles. She enjoys sharing stories about pregnancy and motherhood in hopes of comforting and empowering others. I was struck by Natalie’s story about living with IBD and the overlap with the quality of life of living with Irritable Bowel Syndrome (IBS). It’s a similar constant power struggle that we have living with a digestive disease. In my conversation with Natalie, she tells her story when and how was she diagnosed including her warning symptoms. Natalie told me about her day to day coping and what it’s like being a stay-at-home Mom and Mom to be, with the fear of starting a biologic and the effect on fertility. She speaks about parenthood and what can and can’t she do. She says it takes a wonderful partner to be able to cope. Natalie believes that “the moment you open up and share your story is when you will receive support”. Find Natalie Hayden at: Website: https://LightsCameraCrohns.com Facebook: https://www.facebook.com/natalieasparacio Twitter: https://twitter.com/nataliesparacio Instagram: https://www.instagram.com/natalieannhayden/ Find Jeffrey Roberts and IBS Patient Support Group at: Website: https://www.ibspatient.org Facebook: https://www.facebook.com/ibspatient Twitter: https://twitter.com/ibspatient Instagram: https://www.instagram.com/ibspatient  Music: Werq Kevin MacLeod (incompetech.com) Licensed under Creative Commons: By Attribution 3.0 License http://creativecommons.org/licenses/by/3.0/

Grace Whittle first started having digestive symptoms that felt like daily food poisoning when she was 23 years old. Fortunately her fiancée, Aonghus Shortt, was a mechanical engineer and invented a device, the AIRE (available from FoodMarble.com), to help measure the amount of hydrogen in your breath, which is how you analyze foods that contain FODMAP. A low FODMAP diet is recommended to patients with IBS to reduce symptoms caused by fermentable sugars in foods. The term FODMAP is an acronym for the different sugars. With Aonghus' device, Grace learned that she could eat some foods which she was not sure she could eat; however a diet in FODMAP wasn’t the only answer for Grace’s symptoms. Grace was fortunate to work with doctors that took her symptoms seriously. Her experience in coping with IBS definitely helped to give her confidence. She believes that you will find a solution but it won’t look like anyone else’s solution. Grace is also fortunate to have a very supportive and empathetic partner in Aonghus and for him to invent a device that would help solve her problems. Find Jeffrey Roberts and IBS Patient Support Group at: Website: https://www.ibspatient.org Facebook: https://www.facebook.com/ibspatient Twitter: https://twitter.com/ibspatient Instagram: https://www.instagram.com/ibspatient Pinterest: https://www.pinterest.com/ibspatient  Music: Werq Kevin MacLeod (incompetech.com) Licensed under Creative Commons: By Attribution 3.0 License http://creativecommons.org/licenses/by/3.0/

Shifting from “having IBS” to “have had IBS” is the goal of Dr. Jennifer Franklin (Ph.D., MACP). In this podcast, Dr. Jennifer Franklin (Ph.D., MACP) and I spoke about her unique perspective on how therapy can help people with functional GI disorders. Relationship healing plays a large role in dealing with IBS and this is often something that is addressed by therapy. The relationship that you have with your IBS is something that is worth exploring and as Dr. Franklin (Ph.D., MACP) refers to, as “shifting your patterns”. Dr. Franklin wants patients to feel hopeful and she created the website DontHateYourGuts.com to help patients to be inspired to seek healing and not just symptom management. Dr. Franklin (Ph.D., MACP) offers psychotherapy for individuals, couples and families that she sees on a regular basis as well new patients that she might see for an individual consultation. She is currently working on a webinar series and is involved in writing a book as well as some YouTube videos. Find Jeffrey Roberts and IBS Patient Support Group at: Website: https://www.ibspatient.org Facebook: https://www.facebook.com/ibspatient Twitter: https://twitter.com/ibspatient Instagram: https://www.instagram.com/ibspatient Pinterest: https://www.pinterest.com/ibspatient  Music: Werq Kevin MacLeod (incompetech.com) Licensed under Creative Commons: By Attribution 3.0 License http://creativecommons.org/licenses/by/3.0/

We need to use our heads to be able to learn different strategies to manage problems where medications and dietary changes fall short with IBS. In this podcast, Dr. Jeffrey Lackner (PsyD) and I spoke at Digestive Disease Week in San Diego about Cognitive Behavioral Therapy or CBT and its role as a validated treatment option for IBS patients. CBT is no longer just for anxious or stressed patients. Rather, positive physical changes are occurring in the gut related to abdominal pain and stool regularities. CBT is now a legitimate treatment option, like diet or medication to manage patient's IBS symptoms thanks in part to Dr. Lackner's research and work. Jeffrey Lackner (PsyD) is an internationally recognized authority on the behavioral treatment of chronic pain disorders, especially Irritable Bowel Syndrome (IBS). He has influenced doctors and therapists guidelines worldwide. He is a Professor of Medicine and Chief of the Division of Behavioral Medicine, Jacobs School of Medicine and Biomedical Sciences at the University at Buffalo. Find Jeffrey Roberts and IBS Patient Support Group at: Website: https://www.ibspatient.org Facebook: https://www.facebook.com/ibspatient Twitter: https://twitter.com/ibspatient Instagram: https://www.instagram.com/ibspatient Pinterest: https://www.pinterest.com/ibspatient  Music: Werq Kevin MacLeod (incompetech.com) Licensed under Creative Commons: By Attribution 3.0 License http://creativecommons.org/licenses/by/3.0/

FoodMarble's AIRE is the first portable breath test device that can measure gases which might help to identify which foods you are not absorbing and producing excess gases and which are causing your IBS-like symptoms. Breath tests are used to detect gases which are produced by bacterial fermentation and are then passed through your breath. Excess hydrogen or methane breath gases can lead to a diagnosis of malabsorption, Small Intestinal Bacterial Overgrown (SIBO) or can be a key tigger of Irritable Bowel Syndrome (IBS)-like symptoms including diarrhea, constipation gas and bloating. The low FODMAP diet is an evidenced based diet for IBS to help you determine which foods might be your triggers. Breath tests might be useful as a way to determine which foods are safe and FoodMarble's AIRE portable breath device makes doing this simple. More information and details about how to order the AIRE breath device are available on the FoodMarble website, https://www.FoodMarble.com. See what's in the box when we unbox'ed it, https://bit.ly/2XzpA4S. Aonghus Shortt,PhD Co-Founder & CEO, and Claire Shortt,PhD Chief Scientist from FoodMarble were my guests while at Digestive Disease Week in San Diego. They explained what was the purpose in creating the AIRE breath test device, how does it work and how this might benefit an IBS sufferer especially when it comes to analyzing foods in a low FODMAP diet. Find Jeffrey Roberts and IBS Patient Support Group at: Website: https://www.ibspatient.org Facebook: https://www.facebook.com/ibspatient Twitter: https://twitter.com/ibspatient Instagram: https://www.instagram.com/ibspatient Pinterest: https://www.pinterest.com/ibspatient  Music: Werq Kevin MacLeod (incompetech.com) Licensed under Creative Commons: By Attribution 3.0 License http://creativecommons.org/licenses/by/3.0/