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This week we had quite the conversation with Beth Meals. Beth was diagnosed with UC but also with Endometriosis and POTS. We talked to her about struggling with all of these medical conditions when she was younger and growing up and about how her family dismissed and minimized her health conditions. We also talked about her trying to find the right healthcare providers who would explore these symptoms and help her get the right diagnoses and treatments. We talked to her about how this led to hear not trusting her body and how working with a dietitian has helped her to trust food and her body more. We talked to her about medical gaslighting and how she has coped with that.  We also talked to her about the importance of community and support.

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: 

• Article: "Feeling Dismissed? How to Spot 'Medical Gaslighting' and What to Do About It"- New York Times
• Pelvic Floor Dysfunction in IBD- recorded webinar on Own Your Crohn's and in partnership with the Crohn's & Colitis Foundation- USA
• Stacey Collins, M.A., RD/LDN 

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This week we brought back Dr. Bincy Abraham- Distinguished Professor and Director of the Underwood Center- Fondren IBD Program at Houston Methodist and Dr. Jami Kinnucan- Senior Associate Consultant in the Section on Gastroenterology and Hepatology at Mayo Clinic in Florida. We talked to them about their recent trip to the Digestive Disease Week conference. They mentioned the themes that noted in the conference in advances in diagnostic tools, new medications, and information on diets and IBD. We learned a lot from them and had major FOMO that we didn't get to attend DDW as well. We also may have to try to convince them that "The Bincy and Jami Show" has a nice ring to it and produce their own podcast! ;)

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: 

• An interesting article about the Emerald Innovations device- Outsourcing Pharma
• Emerald Innovations website
• Information about Intestinal Ultrasound- Mount Sinai IBD Center
• Article on Intestinal Ultrasound- Crohn's & Colitis Foundation- USA

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This week we spoke to Ken Carpenter! Ken is the producer and host of Athlete 1 podcast and was diagnosed with UC when he was 46 years old. Since he's been diagnosed he has had a pretty wild ride finding the right treatment and the right provider but has been so fortunate to have his wife be his partner in this process. We discussed all of the health conditions that he's faced and how his community rallied around him. We talked about his love of all things sports including coaching baseball for many years and how he managed that while also struggling with his UC. We talked to him about his life and how he eventually found his path (with help from his wife!) but about all the things in tried along the way including serving in the Army as a paratrooper! 

We had a lot of fun getting to know Ken and we definitely had some good laughs! 

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: 

• Athlete 1 podcast
• Information on Ankylosing Spondylitis- Cleveland Clinic
• Information on J-Pouch Surgery- Crohn's & Colitis Foundation USA
• Surgery in IBD and Pouchitis video- Crohn' s & Colitis Foundation USA

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This week we spoke to Amanda Dinkelman! Amanda is living with Crohn's disease but she doesn't let that stop her from being active and keeping fit. She credits getting out and moving her body with helping her  cope with her disease and has even taken on a new challenge of powerlifting! We talk to her about training after a bowel resection and being very ill, how to trust your body, and how she keeps her body fueled. We also had a long conversation about the importance of finding a healthcare provider that's your true partner in your care and that you can trust. We also discussed how to become your own healthcare advocate and how therapy and meditation can help with learning acceptance, dealing with medical trauma, and with coping skills. We covered so many things and I think this conversation surprised all of us. We had fun and were playful and we also got deep and serious. I think you'll enjoy the ride 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: 

• An interesting story about an Olympic Powerlifter name Ali Zawad with Crohn's
• A video explaining resection surgery- Crohn's & Colitis UK
• Breathing Apps- Breathe2Relax and Awesome Breathing

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This week we had so much fun getting to know Natalie Hayden! You probably know her from her very popular blog- Lights, Camera, Crohn's: An Unobstructed View- and her Instagram account! Natalie is a journalist and worked as an on-air reporter for 3 different TV stations and was also the host of Wakeup Wisconsin all while coping with Crohn's disease. We talked to her about what it was like to work in such a public field while coping with her disease and figuring out the right treatment. We talked to her about when she decided to go public with her disease and to become a powerhouse patient advocate. We discussed how she uses her journalist skills to create informative and accurate stories for her blog and what it's like to engage on social media with our community. We also talked about motherhood and raising 3 small children while living with Crohn's and what it's like to navigate all the tasks associated with managing your disease like shots, appointments, ER visits and more with little ones. We also talked about tips that she has for other people who may be interested in getting active on social media as a patient advocate. We really enjoyed our time with Natalie and had so many more questions for her. If you don't follow her- do it now! You'll learn so much! 

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 about the PIANO study- for pregnancy and IBD while using biologics
• Resources for New Moms with IBD- Article by Natalie in Everyday Health
• IBDMoms- A community by Moms with IBD, for Moms with IBD
• Chronically Jess- resource for folks with IBD

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*** Warning- This episode discusses sexuality and contains sexual content and may not be suitable for all audiences.****
This week we had a really fun conversation with Dr. Neil Nandi! Dr. Nandi is an Associate Professor and Gastroenterologist with the University of Pennsylvania. We discussed his personal connection to IBD and how that shaped his career. We also talked about his role as the Director of Patient Outreach and Advocacy for the South Asian IBD Alliance and how the got involved with that organization. We spent a lot of time talking about how IBD can affect sexuality, how he talks to his IBD patients about this, and how to provide a safe space for people in the LGBTQI+ community to discuss their sexual health. Finally we discussed a fun fact about Dr. Nandi that we found when doing some research on him and now we want his autograph! 

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: 

• South Asian IBD Alliance
• Information on sex and relationships and IBD- Crohn's & Colitis UK
• "Sex, Intimacy, and IBD" Factsheet-  Crohn's & Colitis Foundation- USA
• "Sexual Health & Ulcerative Colitis: How to Talk to Your Doctor"- Everyday Health
• The Needs of Gay and Lesbian People with IBD- Crohn's &  Colitis UK
• Dr. Nandi's fun fact! How to watch "Tie the Knot" or on YouTube

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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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