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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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This week we talked to Erron J. Maxey! Erron is a retired International Professional Basketball Player and now a banker. He had his first Crohn's flare when he was traveling in Columbia for his job and that started a pretty wild ride to get diagnosed and to find him best treatment options. We talked to him about what it was like to live in many different countries while coping with his disease and what it was like to train and eat to compete at an elite level with Crohn's.. We also discussed how it can seem like men are reticent about talking about their health issues and especially their mental health. We also talked about this volunteer activities with The Color of Crohn's and Chronic Illness (Aka COCCI).  It was so fun to talk to Erron and we just scratched the surface! Enjoy! 

Links: 

•  Video featuring Erron that discusses fistulas- COCCI
• An article with tips on International travel with IBD- Medical News Today
• Traveling with IBD- Crohn's & Colitis Foundation 
• IBD Passport- Travel Advice for IBD
• The Foul Bowel: 101 Ways to Survive and Thrive with Crohn's Disease by John Bradley- Erron recommended this book but we had to cut that part. :(

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This week we had the pleasure of talking to corporate executive, wife, mother, nonprofit board member, support group leader, author, and all around badass Christine Rich. And boy did we go all in on this conversation! We talked about mental health, body image, eating disorders, feeling safe or unsafe in your body, and so much more. We talked a lot about her book "Chronic" and how it was a very raw and important look at living with a chronic illness and hearing Christine's story. 

Links: 

• Link to Christine's book "Chronic"
• Find community and support- Crohn's & Colitis Foundation 
• Find a mental health provider trained in GI health- Rome Foundation 
• National Eating Disorder Helpline
• Information on eating disorders and IBD- The Emily Program
• A blog on disorder eating from our friend- Dietitian Stacey Collins! - Lights Camera Crohn's blog

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We're ringing in the new year with a great episode! This week we talk to Dr. Bhaskar Gurram! Dr. Gurram is a pediatric gastroenterologist specializing in IBD at Children's Medical Center Dallas and UT Southwestern. We talked to him about the genetics of IBD and what we know about it from the current research. We discussed Fecal Microbiota Transplant (FMT) and it's role in treating C.Diff. We also discussed C.Diff in general and how to treat it as well as general health maintenance for people living with IBD (especially kids). Finally we talk about the language that's used in IBD care and how medical professionals can ensure that they're using patient-first language to help patients feel more successful and as truly part of the decision making process. 

Dr. Gurram is a treasure and we so enjoyed our conversation with him! Enjoy! 

Links: 

• What is FMT? - Mount Sinai GI Department
• Health Maintenance Checklist for Kids with IBD- Crohn's & Colitis Foundation 
• Lots of resources for families with kids with IBD- GIKids

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We had the pleasure of getting to know Dani Edelstein in this episode! We talked to her about being diagnosed when she was only 8 years old and what it was like for her as the child of a doctor to have to navigate the medical system on her own when she got to be an adult. We discussed how the language used around IBD care can create difficulty for folks living with it- for instance when healthcare providers say that a patient has "failed" their medication. Dani talks about how that lead to patients feeling responsibility and even shame for their disease. We talked about the importance of mental health care, the differences between a loop and an end ileostomy, and so much more. 

Links: 

• What is an ostomy? - United Ostomy Association
• Really informative video about different types of stomas- Zero to Finals YouTube channel
• Many toolkits for children living with IBD and their parents including transferring care to an adult GI- ImproveCareNow

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