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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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This week we caught up with our friend Lauren Erbach Barnfield! We've both known Lauren for several years but have never heard her full IBD story so it was really great to hear it all. We talked about her participation in the PIANO study which is a study about women living with IBD and taking biologics while pregnant and what all that entailed. We talked to her about finding the right treatment for her Crohn's and who choosing a biologic is intimidating especially when you can find so many negative stories on the internet. We also discussed talking to her small children about IBD, her going graduate school while living with Crohn's, having a full-time job AND a family, and about blogging about her Crohn's when she was younger. We also spent quite a bit of time talking about the importance of sharing your IBD story- even the mundane and seemingly normal parts- to help other people better understand what it's like to live with a chronic illness. And we talked a lot about the health insurance system in the US and how challenging it is to people with chronic illnesses. 

Links: 

• A blog about the PIANO study- Natalie Hayden for the Crohn's & Colitis Foundation 
• A factsheet about Pregnancy and IBD- Crohn' s & Colitis Foundation 
• The book Lauren references is Trick Mirror: Reflections on Self-Delusion by Jia Tolentino
• Tips for talking to your kids about your IBD- Crohn's Colitis UK
• Alicia's drink recipe- Orange Lemon Gin Cooler 

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This week we really enjoyed hearing Will Awve's story! We talked about his diagnosis with UC in college and how that affected his college experience. We discussed him trying basically all medication options to try to control his UC, his bouts with C. Diff,  and then his eventual decision to go through J-Pouch surgery. We also had a chance to talk about how your mental health and how you mentally position your disease affects your attitude and resilience. And finally we talk about how UC can create some interesting, uncomfortable, and possibly even dangerous situations when out in the wilderness. 

Links: 

• Take Action on access to medical nutrition- Crohn's & Colitis Foundation
• A blog about hiking and camping with IBD- Girls with Guts
• An interesting blog with tips about hiking with UC- **this blogger is not known to us- any advice and information is the author's. :)

Interested in being a guest? Email Robin at [email protected] or Alicia at [email protected] or both! Cheers!

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This week we had such a great conversation with Joshua Samudre! Joshua is a medical student living with UC and so we talked to him about what it's like to study medicine while also a consumer of medicine. We talked to him about moving across the country and reestablishing yourself and your care. We talked to him about advocacy volunteer and volunteering at Camp Oasis and we had some good laughs about bidets, how mean kids can be, getting old and technology, and his unusual "fun fact" that he shared with us. Also- lots of shout outs to Grady Stewart! Be sure to check out his episode too! 

Links: 

• Advocacy volunteer opportunities- Crohn's & Colitis Foundation
• Camp Oasis- Crohn's & Colitis Foundation 
• Grady Stewart's Bowel Moments Episode

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Welcome to our second Research Roundup episode! We brought back Dr. Sunanda Kane- Professor of Medicine at Mayo Clinic and Dr. Lukasz Kwapisz- Assistant Professor of Medicine at Baylor College of Medicine to talk to us about the latest in what's happening in IBD research. We talked about new medications, biosimilars, diet research, and more. 

Links: 

• Mayo Clinic on Crohn's Disease & Ulcerative Colitis: Strategies to Manage IBD and Take Charge of Your Life- Dr. Kane's new book! 
• Diet and Nutrition Research Updates- Crohn's & Colitis Foundation 

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This week we had a great chat with Dr. Sabina Ali! Dr. Ali is a pediatric gastroenterologist and the  medical director of the Inflammatory Bowel Disease Program at UCSF Benioff Children's Hospital Oakland. She also happens to be living with IBD herself. We talked to her about her special interest in quality of care research and involvement with ImproveCareNow. We also discussed caring for very young children with IBD, the importance of having a great care team, diets and IBD, and her involvement with the South Asian IBD Alliance. 

Links: 

• Information for Parents, Kids, and Teens- Crohn's & Colitis Foundation 
• Support Groups for Parents, Kids, and Teens- Crohn's & Colitis Foundation 
• ImproveCareNow
• Diet and Nutrition- ImproveCareNow

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This week we spoke to Matthew Kasabian! Matt told us about being diagnosed with IBD in college and  how isolated it made him feel. He talked about how he saw all his friends out living their young, fun lives on social media and how frustrated he felt but also how he used these feelings of isolation and frustration to motivate him to seek out new treatments and new healthcare providers. We talked to him about the holistic diet he tried, we discussed his J-Pouch surgery and how living with an ostomy during that process helped him heal and gave him his life back, we talked about his healthy lifestyle of eating well and working out (with a few High Noons and other drinks incorporated), and about job hunting while going through the J-Pouch surgery process. Finally we talked to him about how he stays so positive and what an incredible impact an ostomy nurse named Andrew had on his life and his recovery. 

Links: 

• Ostomy support and resource- United Ostomy Association 
• What is C.Diff and how is it treated? - Mayo Clinic
• IBD and Body Image- Crohn's & Colitis Foundation - Campus Connection 
• Nutrition Tips for IBD- UCSF Health 

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