colitis

This week we had the absolute pleasure to get to know Madhura Balasubramaniam! Madhura is a Ph.D. student in Chennai, India and she is also the Director of Patient Outreach and Advocacy for the South Asian IBD Alliance (SAIA)! She was diagnosed with Crohn's disease in 2019 after struggling with her health for many years. She and her doctor decided to utilize a feeding tube to help her manage her disease and so we talked about her choice to do this and how it was received by her family and community. We talked a lot about IBD in India- how it's viewed, the stigma attached to it, the treatment options, the health insurance system and so much more. We also talked about how she got involved with SAIA and her role on the POA committee and what it's been like to be involved with South Asian patients from around the world who are living with IBD. This was a truly fascinating conversation and Robin and I both loved Madhura. She is so incredibly passionate and committed to improving the lives of everyone with IBD and smart, funny, and a joy on top of it! 

Please keep in mind that the views expressed on this show are those of the speakers and should not be considered medical or legal advice. Please consult with the appropriate expert if you have questions or concerns. 

Links: 

• Nutritional Support and Therapy- Crohn's & Colitis Foundation USA
• Another story by Madhura about using a PEG tube for her Crohn's - Patients Engage
• Where to find info on IBDesis

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This week we talked to Robin's long-time friend, Abbe Feitelberg! Abbe is an attorney who is living with Crohn's disease. When she isn’t working, she is usually traveling, cycling, or finding time for fun no matter what that looks like. Abbe has lived with Crohn’s since the age of 17, getting through college and law school without a proper diagnosis and many difficult days. Following her diagnosis, Abbe went through multiple courses of ineffective treatment, several hospital stays, and some very scary days. But Abbe kept fighting and is proud to live each day to the fullest, truly believing that each one is crazy beautiful.

We talked to her about the Americans with Disabilities Act that provides protections for people living with chronic illnesses. We talk to her about getting through high school, college and law school without a diagnosis and therefore not having access to these protections. We talked to her about choosing a treatment that fits into her lifestyle and managing multiple chronic illnesses. I loved getting to know Abbe and hearing how she lives her lift to the fullest despite managing her illnesses. I can totally see why she and Robin have been friends for years. 

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 Americans With Disabilities Act
• United Nations- Convention on the Rights of Persons with Disabilities
• US Dept. of Education- Protections for Students with Disabilities/504 plans
• ADA National Network- What are public or private college-university's responsibilities to students with disabilities?
• Weighing the new approaches to treating Crohn's and ulcerative colitis- Harvard Health Publishing 
• Megan Starshak's BM Episode! 
• Girls with Guts

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This week we had such a great conversation with Laura Manning, MPH, RDN, CDN! Laura is a registered dietitian that works with the IBD team at the Susan and Leonard Feinstein Inflammatory Bowel Disease Center at Mount Sinai Medical Center. We talked to her about her interesting and unique career before she became a dietitian and why she switched. We talked about nutrition therapy for people living with Crohn's disease and her research on scurvy and IBD. We discussed nutritional supplements and their safety and also how to introduce foods back into  your diet. We also discussed the very effective and empowering GRITT-IBD program which is a multi-disciplinary program intended to provide services and support that will help patients have improved quality of life. Finally we talked about fish. We loved our conversation and laughs with Laura this week 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 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 about the GRITT-IBD Program- Mount Sinai IBD Center
• An article on Scurvy and IBD that talks about Mt. Sinai's findings- General Surgery News
• Laura and the Mt. Sinai team's Journal article- Vitamin C Deficiency in Inflammatory Bowel Disease: The Forgotten Micronutrient- Crohn's & Colitis 360
• Dietary Supplements: What You Need to Know- US National Institutes of Health Office of Dietary Supplements

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This week we talked to Tommy Hazelton! Tommy was diagnosed with UC back in the late 1990's and went through a period where his disease was not well controlled. He was working as a musician and a performer and we talked about how he was able to be up on stage while symptomatic. We talked about the unusual and intriguing things he credits as helping him into remission and to maintaining symptom remission. We  discussed his involvement in a support group and in volunteering as a counselor at Camp Oasis. We also talked about his friendship with another one of our guests -Stacey Calabro! Tommy was funny, introspective, unique, and we had a lot of fun and laughs in this episode. 

Please keep in mind that the views and opinions expressed in this program are those of the speakers and should not be considered medical 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: 

• Stacey Calabro's episode! 
• An interesting article on using breast milk to treat adults
• Blog- "My journey to writing music that inspires"- Crohn's Colitis UK
• A delightful song about this guy's UC- "Ulcerative Colitis: A Song"

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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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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 robin@bowelmomentspod.com or Alicia at alicia@bowelmomentspod.com or both! Cheers!

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