Bowel Moments

This week we had a great conversation with Mason Milne! Mason is the host of the Crohn's and Autism Awareness Advocate podcast! We talked to him about being diagnosed with Crohn's when he was 17 years old and a bit about the health system in the UK where he lives. We talked about what it's been like navigating the healthcare system with autism and advocating for his needs. Mason gave some advice for other people living with autism that may also need to communicate their specific needs or preferences to their healthcare team. We talked a lot about his podcast, the unique series that he does, and how he recruits guests- including some famous ones! And finally we discussed his love of the show Dr. Who and how attending conventions has lead to him recruiting some very cool guests to his show!

Please keep in mind that the views and opinions expressed in this program are those of the speakers and should not be considered medical or legal advice. Please consult with your healthcare team on any changes to your disease, diet, or treatment. We want you to stay safe and healthy! ;)

Links:

• Mason's YouTube channel
• Mason's episode with the 8th Doctor- Paul Magan
• An interview with Mason about living with Crohn's and Autism- Crohn's Colitis UK

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This week we had a great time getting to know Dr. Kim S. Beall! Kim is a Doctor of Pharmacy whose son was diagnosed with Crohn's disease when he was 13 years old. After she and her son discussed his treatment options with his healthcare team and they did some research he decided to try Exclusive Enteral Nutrition (EEN) to get his Crohn's in remission. We discussed how Kim and her family supported him during this time and how he coped with being on this very restrictive diet. Nutrition has been central to Kim's son’s management of Crohn’s disease since his diagnosis in 2013 at age thirteen. Nutritional therapy has been an essential part of providing optimal care and has afforded him the best opportunity to manage life with Crohn’s disease successfully.

After her son achieved remission, she and her husband, Anthony Beall who is a physician, realized that there really was a lack of information about dietary therapies for IBD, that many healthcare providers didn't really know where to look, and that there was a huge need for a repository of this information. So they started the nonprofit organization Nutritional Therapy for IBD in 2019 to fill an essential void in providing evidence-based knowledge, tools, and resources to empower patients and aid clinicians seeking to leverage nutrition alongside medications in inflammatory bowel disease. Their mission is to establish evidence-based nutritional therapy as a foundational part of IBD treatment to enhance the well-being and health outcomes of all children and adults with Crohn’s disease or ulcerative colitis. We empower clinicians and patients with essential, current, comprehensive, educational, and innovative resources. We talked to Kim about starting this nonprofit, some of the great tools available for patients and clinicians, the recipe database, and how her nonprofit has been received by the medical community.

We were so inspired by Kim's passion and the all of the great things that Nutritional Therapy for IBD is doing.

Please keep in mind that the views and opinions expressed in this program are those of the speakers and should not be considered medical or legal advice. Please consult with your healthcare team on any changes to your disease, diet, or treatment. We want you to stay safe and healthy! ;)

Links:

• The Diet Comparison Chart discussed in this episode- Nutritional Therapy for IBD
• Information for Healthcare Professionals- Nutritional Therapy for IBD
• Recipe Database
• Abigail Marie- The Chef with IBD's episode- volunteer with Nutritional Therapy for IBD
• Nicole Pavlin's episode- volunteer with Nutritional Therapy for IBD
• Barbara Olendski's - RD- video
• Information on Exclusive Enteral Nutrition- Nutritional Therapy for IBD

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This week we had such a great conversation with Dr. Megan Riehl! Dr. Riehl is a GI Psychologist, Assistant Professor of Medicine and the Director of GI Behavioral Health at the University of Michigan. We talked to her about all things IBD and mental health and how she helped to establish and incorporate GI behavioral health into the IBD center at the University of Michigan. We also talked to her about her interest in innovations in digital therapeutics, how she's worked with some developers to ensure the efficacy and quality of their products, and what apps that she recommends to patients as well as providers. We talked to her about her new book! It's called "Mind Your Gut: The Science-Backed Whole-Body Guide to Living Well with IBS." While this book is geared for people living with IBS, there is some really great information in there for people living with IBD as well and we discussed this with Dr. Riehl as well. Finally we went over some additional virtual resources that she finds helpful for patients. We really enjoyed talking with Dr. Riehl and we know you'll learn so much from her as well.

Please keep in mind that the views and opinions expressed in this program are those of the speakers and should not be considered medical or legal advice. Please consult with your healthcare team on any changes to your disease, diet, or treatment. We want you to stay safe and healthy! ;)

Links:

• The Gut Health Podcast- Dr. Riehl and Kate Scarlata, RD's new podcast!
• Dr. Meredith Craven's episode
• Info on the Nerva app
• Curable app for chronic pain
• Mahana IBD app
• Diaphragmatic breathing video
• Dr. Brennan Spiegel's book- "VRx: How Virtual Therapeutics Will Revolutionize Medicine"

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This week we talked to Abigail VanHoose- otherwise known as Abigail Marie the Check with IBD!Abigail was diagnosed with UC after a bad car accident and after she finished culinary school. Her disease journey was definitely rocky and very impacted by substandard medical care. Like may people living with IBD, she was told that "diet doesn't matter" but after dealing with multiple flares, she found the book "Breaking the Vicious Cycle that outlines the Specific Carbohydrate Diet and how it can be helpful for people with IBD. She decided to give it a try but found the recipes to be....less than exciting. She decided to put her culinary talents to work and started coming up with new recipes that followed the diet and than led her to decide to share her knowledge in her blog. We talked to her about following the SCD, how she creates the recipes, what she includes on her blog, and her favorite recipes. We also talked to her about her work with the nonprofit Nutrition Therapy for IBD and how she's been able to help them grown their recipe database, expand their social media, and much more. Finally we go on a rant about the medical system, steroids, and medical education. If you've listened to previous episodes, you know this is unsurprising. We had a great time hearing from Abigail, we know you will too and we're all set to try some of her yummy-sounding recipes. Cheers!

Please keep in mind that the views and opinions expressed in this program are those of the speakers and should not be considered medical or legal advice. Please consult with your healthcare team on any changes to your disease, diet, or treatment. We want you to stay safe and healthy! ;)

Links:

• Abigail's Blondie recipe
• Abigail's Coffee "Ice Cream" recipe
• Abigail's Strawberry Cupcake with Vanilla Icing recipe
• Nutrition Therapy for IBD

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This week we talk to Kim Braly, RD! Kim is a Registered Dietitian that specializes in IBD, consults on nutrition and IBD-related research studies, has expertise on IBD nutrition program development and educates practitioners on nutrition therapies for IBD. She is currently in private practice seeing adults and kids living with IBD virtually across the country. Previous to this she was part of the IBD Center at Seattle Children's Hospital where she saw patients as well as developed and participated in research studies on nutrition therapies for IBD. We talked to her about what it was like to develop these studies and how challenging it is to control for all the potential changes that can happen when participants are cooking their own foods. We talked about the Specific Carbohydrate Diet and how she talked to patients about the expectations and prepared them to take it on. We also talked about the efficacy of several diet therapies. We also discussed health and economic disparities and how these might affect the ability of some families to consider dietary therapies and the lack of insurance coverage to help. Finally we talked about the website that she developed with a woman living with Crohn's disease who was her patient at Seattle Children's called Eats for IBD. This website provides much-needed nutrition support and practical resources to those with IBD including educational sessions, support options, and delicious recipes that are friendly to dietary therapies. We had a lot of fun talking with Kim and we learned so much too! Cheers!

Please keep in mind that the views and opinions expressed in this program are those of the speakers and should not be considered medical or legal advice. Please consult with your healthcare team on any changes to your disease, diet, or treatment. We want you to stay safe and healthy! ;)

Links:

• Eats for IBD website
• Kim's private practice website
• ImproveCareNow
• Nutrition Therapy for IBD website
• Find an IBD-Focused Dietitian- Crohn's & Colitis Foundation- USA
• Find an IBD-Focused Dietitian- Academy of Nutrition and Dietetics - USA

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This week we had such a great conversation with Courtney Walls! Like several of our guests, Courtney had a pretty dramatic introduction to the IBD community including needing urgent surgeries, C-diff infections, fistulizing disease, and she's now living with an ostomy (happily). We talked to her about going through all of that while also living with anxiety and how she's processing it using mental health therapies like CBT and internal family systems and going through the Employee Assistance Program through her work. Courtney also started a very successful Instagram account about her Crohn's journey called courts_crohns_corner. We talked to her about what it was like putting her story out so publicly, how different it is to be talking about her disease and her treatment decisions in real time versus sharing past history, and about how she's using her account to give support to others while also getting some herself. Finally we discussed her love to Charles Barkley and Arizona.

Please keep in mind that the views and opinions expressed in this program are those of the speakers and should not be considered medical or legal advice. Please consult with your healthcare team on any changes to your disease, diet, or treatment. We want you to stay safe and healthy! ;)

Links:

• What is Internal Family Systems Therapy
• What is C.Diff- Centers for Disease Control
• Understanding C.Diff Infection- video from the American Gastro Association
• Our episode with Courtney Robert, LCSW about EMDR
• Our episode on what EMDR is like as a patient with friend of the show, Hannah C.
• Learn about Team Challenge- Crohn's & Colitis Foundation USA
• Learn about living with an ostomy, finding support, and more- United Ostomy Association

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This week we had a great conversation with Stephanie Brenner! Stephanie is a Licensed Clinical Social Worker at Chronic Illness Psychotherapy in Evanston, IL who has 13 years of experience working with clients with chronic illnesses. Through her journey as an IBD patient and clinician, she has developed a passion for helping people with health challenges live their lives to the fullest. We talked to her about how living with her IBD helped her develop a passion for being a therapist for kids and adults with chronic illnesses. We also discussed doing therapy with kids, medical hypnotherapy, medical gaslighting and how she works with people as they take on a new identity as they cope with a new diagnosis. We also discuss the guide for parents of kids with Crohn's that she wrote in coordination with Tina Aswani-Omprakash (Own Your Crohn's, SAIA, etc!). We spent a while talking about how she works with patients who may need to address challenges with healthcare providers who they need to remain connected to. We discussed so many aspects of mental health and tapped into Steph's professional experience and brain that we'll have to bring her back to talk more about her IBD and living with an ostomy!

Please keep in mind that the views and opinions expressed in this program are those of the speakers and should not be considered medical or legal advice. Please consult with your healthcare team on any changes to your disease, diet, or treatment. We want you to stay safe and healthy! ;)

Links:

• The Circle of Care Guidebook for Caregivers of Children and Adolescents Managing Crohn's Disease
• Find Camp Oasis- camp for kids with IBD- Crohn's & Colitis Foundation USA
• Resources from ImproveCareNow- for kids with IBD
• Find an IBD trained therapist- Rome GI Psych
• Episode with Dr. Meredith Craven about hypnotherapy
• Episode with Robin and Hannah Cramer about doing EMDR
• Episode with Courtney Robert, LCSW about EMDR

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***Warning that this episode discusses eating disorders, disordered eating, and medical trauma.*** This week we spoke with Dr. Jordan Shapiro! Dr. Shapiro is a GI Hospitalist at Peak Gastroenterology Associates in Colorado as well as a private practice GI at Gentle GI in Houston, TX (starting April 1, 2024). Dr. Shapiro also is a yoga instructor and enthusiastic practitioner and so we spend quite a bit of time learning about the practice of yoga that goes beyond the body movements we're probably all familiar with and how adding yoga to your care may be beneficial. He also has expertise in working with patients with eating disorders or disordered eating as well as in trauma-informed care. We talk to him about how he approaches patient care in a empathetic way and how he works with patients who have identified trauma experiences that may impact their care. We also talk to him about how he uses this knowledge and experience to help other providers learn how to create a safe environment for people who may be struggling with trauma responses. We really enjoyed this conversation with Dr. Shapiro and think you'll learn a lot from him as well.

Please keep in mind that the views and opinions expressed in this program are those of the speakers and should not be considered medical or legal advice. Please consult with your healthcare team on any changes to your disease, diet, or treatment. We want you to stay safe and healthy! ;)

Links:

• Dr. Tiffany Taft's episode- discusses her research on medical trauma
• Yoga and Meditation video- GI Research Foundation
• Interesting research article on medical trauma- among the authors is former guest Mara Shapiro- by the Crohn's Colitis Young Adult Network (CCYAN)
• Diet, Culture, and Your Body- Crohn's & Colitis Foundation- USA

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This week Alicia was joined by guest host and past guest, Derek Dodson! They interviewed Jordan B. McConnell! Jordan is a Air Force veteran, IT professional, father and husband who also lives with Crohn's disease! We talked to him about being diagnosed as a young teen and how his disease was presented to his family and how he was able to join the military and how that affected his ability to continue in his military career. Jordan is also the creator and one of the hosts of the Crohn's Veteran podcast and lifestyle brand. We talked to him about creating the show, recruiting his co-hosts, and all of the amazing guests that they were able to interview as well as the community they created around the show. We also discussed coping with IBD as a male and how that may create situations where one may feel stifled in expressing needs and so much more. We had such a great conversation with Jordan and we can't wait for you to get to know him as well.

Please keep in mind that the views and opinions expressed in this program are those of the speakers and should not be considered medical or legal advice. Please consult with your healthcare team on any changes to your disease, diet, or treatment. We want you to stay safe and healthy! ;)

Links:

• Jordan's instagram
• Jordan's interview with Amber Tresca at About IBD podcast
• Crohn's Veterans website

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This week we had the absolute pleasure to talk to Dr. David Binion! Dr. Binion is a physician-scientist who is also living with Crohn's disease. He is Co-Director of the IBD Center at the University of Pittsburgh School of Medicine. He was diagnosed with Crohn's when he was a teenager- before the information age and also before there were many treatment for IBD. He has devoted his career to analyzing "Big Data" to figure out how to predict disease outcomes, prognosis and flares. We talked to him about his longitudinal research, what he's learned, and how that's given him hope as an IBD patient. We talked to him about what he's seeing in reclassifying IBD into more subcategories and what that will mean for more effective treatment and also what he sees on the horizon for IBD research.

We enjoyed getting to know Dr. Binion so much and know that you'll find this conversation as interesting and hopeful as we did!

Please keep in mind that the views and opinions expressed in this program are those of the speakers and should not be considered medical or legal advice. Please consult with your healthcare team on any changes to your disease, diet, or treatment. We want you to stay safe and healthy! ;)

Link:

• Dr. Binion's page on winning the Sherman Prize in 2018

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