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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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This week we talked to Registered Dietitian, Amalia Karlin! Amalia experienced symptoms very similar to UC but she struggled to get a diagnosis.  Eventually her symptoms got to be so severe she had to have a colectomy and now lives with an ostomy. After that she decided that she as going to devote her career to helping other people living with ostomies to maximize their nutrition and live their best lives. We also talked to her about life with an ostomy, the healthcare system in Canada, and experiencing pregnancy with an ostomy. She has a very dramatic story but we think you'll love meeting her as much 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! ;) 

Links: 

• Diet & Nutrition- United Ostomy Association
• Nutrition for Ostomy Patients - video- University of Miami
• Food reference chart for people living with ostomies- United Ostomy Association 

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Welcome to our 100th episode! This week we talked to the renowned Dr. David T. Rubin! Dr. Rubin is the Joseph B. Kirsner Professor of Medicine and a Professor of Pathology, Chief of the Section of Gastroenterology, Hepatology & Nutrition and the Co-Director of the Digestive Diseases Center at The University of Chicago Medicine. 

He also currently serves as an associate faculty member at the MacLean Center for Clinical Medical Ethics, an associate investigator at the University of Chicago Comprehensive Cancer Center and is a member of the University of Chicago Committee on Clinical Pharmacology and Pharmacogenomics. He is the chair of the National Scientific Advisory Committee of the Crohn’s & Colitis Foundation, where he also serves as a Board of Trustees member. He is the deputy chair of the Executive Committee of the International Organization for the Study of Inflammatory Bowel Disease.  In 2018, Dr. Rubin completed the Harvard T.H. Chan School of Public Health Leadership Development Course for Physicians.

Dr. Rubin is a Fellow of the American Gastroenterological Association (AGA), the American College of Gastroenterology (ACG), the American Society for Gastrointestinal Endoscopy (ASGE), the American College of Physicians (ACP), and the Royal College of Physicians (Edinburgh). He is on the Board of Trustees for the ACG. Among numerous awards and honors, Dr. Rubin was chosen by his peers as a member of Best Doctors (recognized for superior clinical ability) and America’s Top Physicians (gastroenterology). Additionally, he twice received the ACG’s Governor’s Award of Excellence in Clinical Research (2003 and 2013), and the UChicago Postgraduate Teaching Award in recognition of significant contributions for fellowship education (2006). In 2012, he received the Crohn’s & Colitis Foundation’s Rosenthal Award, a national leadership award bestowed upon a volunteer who has contributed in an indisputable way to the quality of life of patients and families. He is an Associate Editor of the journal Gastroenterology and Editor-in-Chief of the ACG On-Line Education Universe. In 2020, Dr. Rubin received the Sherman Prize for Excellence in Crohn’s and Colitis.

Dr. Rubin is an editor of a best-selling book Curbside Consultation in IBD which is now in its 3rd edition and an author or coauthor of over 500 articles on treatment and management of IBD, cancer in IBD and novel paradigms, as well as the first author of the 2019 ACG Guidelines for ulcerative colitis. His current research is in the area of novel approaches to monitoring of IBD (wearables and point of care intestinal ultrasound), prevention of progressive complications from uncontrolled inflammation, and a variety of collaborative and translational studies related to the causes of IBD and its complications. 

Episodes from some of Dr. Rubin's UChicago's team: 

• Dr. Alysse Bedell- Gastro Psychologist
• Michele Rubin, APN- JPouch surgical nurse extraordinaire
• Marita Kametas- Ostomy Specialist! 
• Dr. David Choi- IBD Pharmacist

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.

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This week we spoke to Liam Robertson! Liam was diagnosed with UC when he was a young adult but the process was lengthy and filled with times when he was not believed. We talked about what that was like to navigate the health system and his feelings on it. We discussed how he got so involved in social media, how that's helped him cope with flares and complications, and the importance of having a community around you. We also talked about the books that he's written including "More Than Meets the Eye: Living with Ulcerative Colitis" and the kids book series about Jack Jupiter who is a child living with IBD. We talked about what prompted him to write the books and the response he's gotten from people all over the world. We also discussed his job on an oil rig and what that's been like for him to be so far away from medical care with UC. And finally we spoke about him training in muay thai- what got him interested and more. Liam was so much fun to talk to! Go check out his books. 

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" 

• Liam's book- "More Than Meets the Eye: Living with Ulcerative Colitis"
• Liam's newest Jack Jupiter book- "Jack Jupiter- Reindeer Rally" 
• Find all of his books here.

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This week we spoke to Michele Rubin! Michele is an advanced practice nurse and is the Associate APN Director of the IBD Center at the University of Chicago Medicine. She specializes in surgery for IBD and has helped to create a J-Pouch specific clinic. We talked to her about surgery part of the treatment options, J-Pouches and what to expect in recovery, and how she works with patients to ensure they have the best outcomes. We also discussed the research that she's done related to IBD surgery and their efforts to try to predict a patient's response to their J-Pouch and how to treat complications. Finally we talked about how and why a surgeon may choose to hand sew instead of use surgical staples. Michele has been in the IBD space for a long time and has so much knowledge to share and she was such a joy and a light. We could have talked to her for hours. 

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! ;) 

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This week we talked to Ashley Mann! Ashley was diagnosed with Crohn's disease when she was 20 years old but she had been experiencing symptoms when she was in high school. We talked to her about what it was like being a competitive cheerleader with active disease. We talked to hear about what she describes as trying "every medication on the market" and navigating countless surgeries. We discussed her decision to move to a permanent ileostomy and how close she is to living with short-gut syndrome. We talked about how she's had to learn to manage her healthcare and advocate for herself while moving frequently because of her husband's career in the military. We also talked about what it was like to get her care in the military healthcare system and her experience with friend-of-the-show, Dr. Anish Patel. Finally we talked about the importance of making healthcare decisions that you feel are right for you even in the face of differing opinions from the people most important to you. 

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: 

• Our episode with Dr. Anish Patel
• A video about Short Bowel Syndrome- Canadian Society for Gastrointestinal Research 
• 
  

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This week we had the pleasure of talking with Bianca Hernandez! Bianca was diagnosed with Crohn's disease in 2015 and she almost immediately parlayed her diagnosis into advocacy for her community. She worked with her school system to get better access to the private bathroom at her school and rallied and inspired other students affected by IBD to advocate for this in their schools. She was selected to join the National Council of College Leaders program at the Crohn's & Colitis Foundation- USA which allowed her to lead in many other advocacy initiatives including step-therapy reform and Ally's law and to work on ensuring that educational materials developed were properly translated into Spanish. This program also introduced her to life-long friends and other inspiring young people in the IBD Community. We talked about her advocacy work and how her efforts to ask for what she needed lead her to becoming a fierce advocate for the whole IBD community. We discussed the perils of comparing your healthcare decisions and disease with other people's journeys and how to destigmatize medical decisions and to not compare yourself to others. We discussed how IBD impacts the Latinx community and ideas on how to raise awareness about IBD and colon cancer screening within these communities. Bianca was so much fun to talk to and is so inspiring. I know you'll find her passion as infectious 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! ;) 

Links: 

• Information on the National Council on College Leaders- Crohn's & Colitis Foundation- USA 
• Crohn's & Colitis Foundation- homepage in Spanish
• Ally's Law/ Restroom Access Law- Crohn's & Colitis Foundation- USA
• Information about Step Therapy- Crohn's & Colitis Foundation -USA

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This week we had such a great conversation with Dr. David Schwartzberg! Dr. Schwartzberg is a double-board certified colorectal surgeon at Mather Hospital and Columbia specializing in IBD, pelvic floor conditions, re-operative colorectal surgeries, J-Pouch disorders, and minimally invasive surgical techniques. We talked to him about his passion for colorectal surgery and how he spends any free time he has that's not with his family researching and learning more about it. We talked to him about his drive to find a career that helped people and had a true impact on the world. We discussed his interest in J-Pouches and improving complications that may come with previous surgeries. We explored how some folks that had been diagnosed with UC to start may now have a Crohn's diagnosis post J-Pouch and also upper GI Crohn's disease. We also talked about his love of music and how he and his wife have fostered that love in his 3 boys. We also talked about many other things including the improved technology in buckets but I cut that part out.  Needless to say we laughed, we cried, we went off the rails but I promise you're getting the best part.  We don't think Dr. Schwartzberg could be more more passionate about caring for people living with IBD and their families and we can't wait for you to hear that in this conversation too.  

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: 

• Learn more about Dr. Schwartzberg in this video
• Dr. Schwartzberg explains 3-Part J-Pouch surgery in this video- Empowering Patients LLC
• Special Concerns for People with J-Pouches- UCSF Health
• When Should Chronic Pouchitis be Treated as Crohn's Disease?- Crohn's & Colitis Foundation USA 

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This week we had the pleasure of getting to know Alex Boyd! Alex was diagnosed with UC when she was 26 years old when she thought she had caught a stomach bug that had gotten very aggressive. It was only 2 weeks after her diagnosis that she was advised to have her colon removed and to start her J-Pouch surgery process. We talked to her about the dramatic way that she was introduced to our community and how she worked with her medical team to make this decision. We talk to her about the issues that she's experienced with her J-Pouch and how she's coping with that. We talked to her about how she's focused on her mental health to help with her coping skills and also how she's worked with her employer to get the accommodations that she needs to be the best employee she can be. We also spoke about how living with an illness like this can lead you to examine your life and your relationships and how that can lead you to making some big, and at times scary choices to allow you to grow and lead the life you deserve.  We really enjoyed hearing Alex's perspective and all that she's learned and we know you will too. 

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! ;) 

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This week we spoke to Adam Finkelstein! Adam was diagnosed with UC when he was just 2 years old. We talk to him about what it was like growing up with UC and dealing with it as a child. We spoke about how his experiences with the medical system prompted his interest in writing a children's book for other kids with IBD called "Up and Adam: A Patient's Experience on Winning with IBD." Also how it sparked his interest in becoming a physician and especially a surgeon. Finally we talked about Adam's experience as a Camp Oasis counselor, how he was able to share his book with all of the kids this summer, and what their reactions were and the conversations it started. Adam was a joy and we think he'll make an extremely empathetic doctor some day soon! 

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: 

• Find Adam's book on Barnes & Noble 
• Adam's episode on the About IBD podcast
• Adam's email- [email protected]

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