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This week we talked to Traci Beebe! Traci is the Director of Nursing and Clinical Practice at The Permanente Medical Group and she also happens to be Robin's sister! Traci was in nursing school when Robin was diagnosed with IBD and we talked to her about what that was like. We also talked to her about her experience with pain management clinics and pain and IBD. We discussed how and why pain management is so complicated and misunderstood in IBD and what we can do to change that. We also talked about the importance of case management and involving family in chronic illness care and management. Finally we talked about what it's been like for her to experience and help Robin during some of her most challenging times with IBD. Traci is so passionate and such and advocate and it was such a JOY to get to know her during this conversation. 

Links: 

• How to Support Someone With IBD- Blog by the Crohn's & Colitis Foundation- USA
• Resources for caregivers and professionals caring for IBD patients and their families- ImproveCareNow
• Pain Management for IBD- Crohn's & Colitis Foundation- USA
• Pain and IBD- Crohn's Colitis Canada

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This week we talk to Kajal Patel! Kajal is a 3rd year medical student originally diagnosed with UC but when she started to develop fistulas, her diagnosis was changed to Crohn's. We spoke to her about advocacy and a group she co-founded on campus for medical students with chronic illness. We talked about how she copies with everything that comes with IBD and school like setting up a 504 plan when you're an adolescent and registering with your college or university's office of disability services (even if you're in remission.) We discussed developing a sense of self/identity when diagnosed with IBD at a formative age and how she used to think she "was" her diagnosis and we talked to her about choosing GI for her career. 

Links: 

• Read more about Kajal's story- Own Your Crohn's Blog
• Talking to your professors about IBD- article written by Kajal for the Crohn's & Colitis Foundation
• 12 Things I Wish I'd Known Before Going to College With A Disability or Chronic Illness- Self
• Navigating College- Crohn's & Colitis Foundation- USA

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This week we talked to Dr. Alessandro Fichera! Dr. Fichera is the Division Chief of Colorectal Surgery at Baylor University Medical Center in Dallas, Texas and the Surgery Safety and Quality Officer since July 2020. His clinical and research interest include colorectal cancer and inflammatory bowel disease. We talked to him about the different types of surgeries for IBD including robotically assisted surgery. We talked a lot about J-Pouch surgeries and optimizing outcomes for patients. We discussed how he addresses sexuality with his patients when it may be affected by a surgery. Finally we discussed his "5 R's" principle for preventing surgical recurrence and his love of the blues. 

Links: 

• Surgery for IBD- Crohn's & Colitis Canada 
• Surgery for UC- Crohn's & Colitis Foundation- USA
• Surgery for Crohn's Disease- Crohn's & Colitis Foundation- USA
• Understanding J-Pouch Surgery- Crohn's & Colitis Foundation- USA

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This week Robin had a fan girl moment while we talked to Jackie Zimmerman! Jackie is one of the founders of Girls with Guts and was one of the OG IBD bloggers with her blog called "Blood, Poop, & Tears." Robin was a big fan of her blog and got a lot of information and support from it when she was originally diagnosed. We talked to her about creating community for women with IBD, living with both UC and Multiple Sclerosis, coordinating her care, building and running a business while living with IBD and MS, advocacy and advising with pharma companies, and so much more. This conversation had us feeling so many things- I hope you enjoy it as much as we did. 

Links: 

• Jackie's Blog
• Girls with Guts
• What are the younger and elder Futharck Runes? 
• Tips on building a business while living with a chronic illness- Forbes

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This week we talked to Francesca Ferraro! Francesca was diagnosed with UC in 2019 and just had the first part of a J-Pouch surgery in January 2023. She has been absolutely loving life with her ostomy and talks a lot about the pros and cons of continuing with the next round of the J-Pouch process. She told us how her ostomy has improved her quality of life, decreased her anxiety, and has allowed her to go out and live the life she felt had been significantly compromised by her UC. We also talked about making such big decision as such a young age, the medication merry-go-round, and the emotional toll and trauma that can come with some IBD symptoms. We also talked about working with a therapist to help with the grief and trauma that can come with these diagnoses. Francesca is funny, resilient, interesting, ambitious, and so much more. I think you'll love meeting her as much as we did. 

Links: 

• Understanding J-Pouch surgery video- Crohn's & Colitis Foundation- USA
• How to Change Your Ostomy video- Ostomystory
• United Ostomy Association of America website
• Rome Foundation- Find a therapist trained in IBD- USA

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This week we had a great conversation with Dr. Jeremy Adler! Dr. Adler is the Director of the Pediatric IBD Program at CS Mott Children's Hospital at the University of Michigan. We talked to him about his research interests in quality of care improvements, health disparities and IBD, and the Covid vaccine and its effectiveness with children with IBD. We also talked to him about the medications used to treat children with IBD and his work leading the BISCUIT Study which looks at why biologic treatments are discontinued in the treatment of kids with IBD and the outcomes. We also talked to him about why he decide to go back to do even more medical school to become a pediatric IBD specialist after working as a pediatrician for many years.  We really enjoyed sharing a cup of later afternoon coffee with Dr. Adler and hope to get to talk to him again soon! 

Sincere apologies for the audio quality this week! My internet was not as great as it needed to be in the airport. Lesson learned! We appreciate your patience!! 

Links: 

• Information about IBD in Children- North American Society for Pediatric Gastroenterology, Hepatology and Nutrition (NASPGHAN)
• IBD Resources for Parents and Kids with IBD- ImproveCareNow (ICN)
• Youth and Parent Resources- Crohn's & Colitis Foundation- USA
• Surgery Decision Making Tool- ImproveCareNow
• Information about surgery for UC- Crohn's & Colitis Foundation- USA

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This week we had such a great conversation with Sam Reid! Sam works in digital engagement and communications for an independent, nonpartisan policy institute in Washington D.C. Her Crohn's disease has had a big impact on her career and many of the issues that she works to improve such as drug pricing and barrier to care. We had a very interesting and passionate conversation about healthcare access and affordability. We also talked about how she sought connection via social media and the blogs and articles that she's written to help other people coping with their disease. She's been published in Teen Vogue, Allure, Healthline and more. Sam had to learn how to navigate the healthcare system quickly and she's channeled that into such impactful and passionate outlets. We could have talked to Sam for so much longer and it was so hard to edit this episode down! 

Links: 

• Op Ed written by Sam for Teen Vogue- Trying to Access  Healthcare Can Feel Like a Second Job
• Op Ed written by Sam for Teen Vogue-Chronic Illnesses are Devastating the Finances of Young American Like Me
• Article by Sam for Allure- All of the Product I Use for My Crohn's Flare Ups

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This week friends of the show Stacey Collins, RD and Josie McGarva, GI Psychologist join us to recap the Crohn's & Colitis Congress. Congress is a conference for IBD HealthCare providers and researchers that's held by the American Gastroenterological Association and the Crohn's & Colitis Foundation. This conference focuses on the total care of people living with IBD from bench research to bedside and both Stacey and Josie  presented about their research and work. We talked about what they spoke on, what they learned, what left them feeling hopeful both professionally and as patients with IBD, and their thoughts on how the conference can improve and evolve. It may sound like a stuffy conversation but we had a lot of fun and laughs in this conversation with our friends. Cheers! 

Links: 

• Stacey Collins is an IBD focused dietitian- this is her private practice page
• Josie McGarva teaches yoga! If you're in Denver, you can find her classes here
• A journal article by Josie about PTS and IBD
• OutCare Health- comprehensive resource for LGBTQ+ healthcare
• Breathing Apps mentioned- Breathe2Relax and Awesome Breathing

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This week we talked to Maurie Jhaveri! Maurie was diagnosed with Crohn's when she was 11 years old but she was not stranger to Crohn's. Her dad was also diagnosed when he was 11 and so she was already a bit familiar with it but obviously had many questions as she started to navigate it herself. She found great support, education, and comfort in the Child Life Specialist at her children's hospital (shout out to Brenda Sonnier!) and that lead her to choosing to study Child Life so that she could become that same source of support for other kids affected by illness. We talked about her path to finding a good treatment, the complicated guilt than can come with living with a chronic illness, a new diagnosis she's having to navigate and co-manage with her Crohn's, and some of her unusual side effects. We also talked about how dance helped her to cope with her Crohn's and to help her connect with others when she was  younger and how she'd like to create a dance program of her own to help other kids living with chronic illness. Maurie was such a joy to talk to and we know you'll love this conversation too. 

Links: 

• Learn about Child Life
• Youth and Parent Resources regarding IBD- Crohn's & Colitis Foundation 
• Camp Oasis- Camp for kids with IBD- Crohn's & Colitis Foundation 

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This week we talked to Kelly Issokson, RD! Kelly is the Clinical Nutrition Coordinator at the F. Widjaja Foundation Inflammatory Bowel Diseases Institute at Cedars-Sinai in Los Angeles, California. Kelly provides nutrition therapy to children and adults in the IBD Institute, the Nutrition & Integrative IBD Subspecialty Clinic. She is the Course Director and Apprenticeship Director of the newly minted Cedars-Sinai Advanced Dietary IBD Education and Training (DIET) Program. Her research focus is on the nutritional optimization of surgical patients with IBD. We talked to her about this new provider training program and why it's so important. We discussed what patients can do to optimize their nutrition if they're preparing for surgery and what labs to ask for in general to get an idea of your nutrition status. We also talked about the nutrition care pathway that Kelly helped research and write for providers to track their patients nutrition status and to check for malnutrition and also her volunteer work doing advocacy on access to nutrition counseling services and medical food. 

Links: 

• Nutrition resources for healthcare providers- Crohn's & Colitis Foundation 
• Get involved with IBD advocacy- Crohn's & Colitis Foundation 
• Link to find Stacey Collins, RD- IBD specialist in private practice- friend of the show and Kelly Issokson! 

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