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**Trigger warning: This episode discusses suicidal ideation.**
This week we had so much fun getting to know Belinda Brown! Belinda is the CEO of Crohn's & Colitis New Zealand! Belinda was diagnosed with Crohn's at 26 years old and we discussed her diagnosis, her search for the right treatment, navigating the consequences of her surgeries when she was trying to conceive, and her struggle with thoughts of suicide and how she coped with these dark feelings. We also talk about how her diagnosis led her to get involved with Crohn's & Colitis New Zealand, to join their board, and to eventually lead the organization as CEO. We discussed the great work they're doing and especially their amazing camp for kids living with IBD called Camp Purple.

We know you'll love Belinda as much as we did and we can't thank her enough for sharing her passion, her truth, and her vulnerability with us and with our community.

If you or a loved one struggling with thoughts of suicide, please call or text 988.

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;

• Crohn's & Colitis New Zealand
• Camp Purple
• Coping emotionally with IBD
• Fertility and pregnancy with IBD
• 3 Ply Take on the Rickshaw Run video
• Information about visiting New Zealand with IBD

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This week Robin was joined by guest host, friend of the show, and IBD Dietitian, Stacey Collins! They spoke to Yi Min Teo! Yi Min is Registered Dietitian Nutritionist and owner of Herbs and Food – a virtual private practice specializing in digestive health and culturally-sensitive nutrition counseling. They talked about Yi Min growing up in Singapore and some of the cultural differences that she noted when she moved to the US and also some of the similarities. They discussed working with clients who have comorbid diagnoses with their IBD and the importance of personalizing a plan that works for all aspects of their health and circumstances. This lead to a really interesting conversation about incorporating cultural foods and traditions into diet plans and also to food accessibility and disparities. They also talked about advocacy and expanding dietitian services to even more people as well as meeting each patient where they're at to learn how to incorporate effective diet changes to each person's life circumstances. It was a really impactful discussion about food accessibility and how to make diet therapies more available to everyone living with IBD. Listen and learn along with me with this fun and important conversation!

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:

• Find Yi Min on Instagram
• Yi Min's website
• Nutritional Therapy for IBD nonprofit- great info on diet therapies for IBD
• Diet, Culture, and Your Body- Crohn's & Colitis Foundation USA

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This week we spoke to Dr. Alan Moss! Dr. Moss is the Chief Scientific Officer at the Crohn's & Colitis Foundation in the US. Previously he was the Director of the Crohn’s & Colitis Program at Boston Medical Center (BMC) and Professor of Medicine at Boston University (BU). He is a clinician-scientist who is a passionate patient advocate. We talked to him about moving from Ireland to the US to pursue training in IBD. We talked to him about why he decided to switch from direct patient care to leading the scientific efforts at the Foundation. We talked to him about what plans he has for the future of research at the Foundation including shepherding in new technology such at AI. We talked to him about how they are ensuring patient data protections and equity in how technology may shape research. We discussed how the research agenda has changed from focusing solely on remission to prevention, remission and on to repair and healing past damage. Finally we discussed the new 5 year strategic plan that the Foundation has undertaken in guiding their research agenda and the process by which healthcare providers, researchers and patients helped to build this new plan.

We had such an interesting conversation with Dr. Moss and we're excited to see what he will accomplish in this new role.

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:

• Overview of Challenges in IBD
• Information about IBD Plexus
• Information about IBD Qorus
• Information in IBD Ventures

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This week we had such an interesting conversation with Dr. Erica Barnell. Dr. Barnell is the Co-Founder and Chief Medical and Science officer for Geneoscopy, Inc! Geneoscopy is a life-sciences start-up company that leverages eukaryotic biomarkers to non-invasively diagnose, monitor, and treat gastrointestinal disease. The idea for Geneoscopy was conceived during Dr. Barnell’s first clinical rotation while earning her MD/Ph.D. at Washington University School of Medicine in St. Louis. Specifically, Erica encountered a woman with Stage IV colorectal cancer (CRC) who had never undergone a colonoscopy, citing the inconvenience and burden of attending a traditional colonoscopy as key barriers. Dr. Barnell developed an easy non-invasive stool test to screen for colon cancer and she is now expanding it to the IBD space. She and her team are working to be able to use this RNA screening tool to allow for better prediction of treatment outcomes, disease monitoring and more. We talked to her about developing her initial test, going through the FDA approval process, and then developing a company while still finishing her MD/PhD. We also talked to her about starting a company with her brother and all of the many life changes she went through during it's initial stage as well. We discussed RNA technology and she gave us a quick lesson on it, and finally we discussed her participation in the Crohn's & Colitis Foundation's IBD Innovate Conference earlier this year and how it helped her premier her product to the IBD space and to explore possible partnerships and funding opportunities.

Robin and I are big geeks for research and innovation and this conversation with Erica was so fun.

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 about the IBD Innovate Conference- Crohn's & Colitis Foundation- USA
• Episode of Oncology Overdrive from Healio with Dr. Barnell
• FDA Approves ColoSense test- Colorectal Cancer Alliance

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This week we talked to Nicole Kittleson! Nicole's daughter Addy was diagnosed with Crohn's disease when she was 8 years old but that diagnosis wasn't easy to get to. Addy wasn't growing or gaining weight, her eyes became dull and her hair started falling out. Nicole brought her concerns to her daughter's pediatrician but they just encouraged her to feed her more calories but Nicole knew something more was going on. When her daughter started experiencing skin inflammation and complaining about blood in her stool and Nicole finally demanded that her daughter get the tests she needed to get a definitive diagnosis of Crohn's. We talked to her about Addy's unusual and severe symptoms of a flare and their decision to use the Specific Carbohydrate diet to treat her disease for several years. We talked about the ramifications of using this diet including the cost, the time, and the impact that it had on family traditions and culture. We talked about how Nicole, Addy, and the rest of the family incorporated the SCD and these changes and needs into their daily routine and how they coped as a family. Finally we talked about how parents can also experience medical trauma as part of the process of their child having a chronic illness and about how parents can care of themselves while also caring for their child with IBD. In Nicole's case her own diagnosis of an autoimmune condition- Lupus- forced her to understand her need to care for herself as well as her family.

We had a deep and impactful conversation with our friend Nicole as well as some laughs. We know that you'll be inspired by her and her daughter Addy 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 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:

• Nutritional Therapy for IBD- great source of info in diets and IBD
• Info on the Specific Carbohydrate Diet- Nutritional Therapy for IBD
• Diet info from the Crohn's & Colitis Foundation- USA
• Info on Camp Oasis- camp for kids with IBD- Crohn's & Colitis Foundation USA
• Community & Support programs- Crohn's & Colitis Foundation- USA
• IBDesis- South Asian IBD Alliance's support program
• Info on Toxic Megacolon- Stanford Children's Hospital

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This week we met Victorien Madsen! Victorien lives in The Netherlands and was diagnosed with UC after the birth of her 2nd child. We talked to her about navigating this new disease while parenting young children. Trying to find the right treatment option and finally finding the Specific Carbohydrate Diet before the internet was really even a thing. We talked to her about how she incorporated that diets into her life and her family's routine. We talked to her about modifying recipes and how she learned to create delicious foods for herself. We discussed how she started volunteering to run a support group for people with IBD who are interested in using diet to complement their treatment and finally how all of that led her to start volunteering with Nutritional Therapy for IBD.

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:

• Nutritional Therapy for IBD
• An article about Victorien and her diet journey- in Dutch!
• Curing Food- Victorien's website- in Dutch!
• Victorien's pecan waffle recipe
• Nutritional Therapy for IBD's Diet comparison chart

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This week we had such a great conversation with Kate Scarlata, MPH, RD! Kate is a Boston-based registered dietitian and New York Times best selling author with 30+ years of digestive health experience. Kate is a world-renowned low FODMAP diet expert and invited speaker on the role of food intolerance in GI disorders at numerous international and national gastrointestinal health conferences from Harvard Medical School to Monash University. She specializes in digestive health including treatment for: IBS, celiac disease, inflammatory bowel disease, mast cell activation syndrome and small intestinal bacterial overgrowth (SIBO).

We talked to her about so many things! We discussed patients that have co-occurring IBD and IBS- how frequent that is and how to best treat them. We talked about food intolerances, intolerance testing, and elimination diets. We discussed medical equity and her efforts to highlight the lack of medical diet-friendly- like for celiac- food offered in food pantries. We talked about common myths surrounding gut health that she asks her guests on her podcast called The Gut Health podcast to discuss. Finally we discussed her new book that she co-authored with Dr. Megan Riehl called "Mind Your Gut: The Science-Based, Whole-Body Guide to Living Well with IBD."

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:

• Kate's Blog that she mentions
• Kate and Megan's book
• Dr. Megan Riehl's episode
• Kate and Megan's podcast -The Gut Health Podcast

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This week we spoke to Rocio Castrillon- better known for her popular Instagram account @VoiceforIBD! She shared her story of being diagnosed with Crohn's disease and how a lack of information caused her to suffer in silence with fistulizing disease. We talked to her about finally getting involved with Team Challenge with the Crohn's & Colitis Foundation in the USA and how that helped her find a large community of other people living with IBD. The opened up other volunteer opportunities and so we talked to her about the many ways that she's gotten involved with the community including advocacy work, leading a Spanish-speaking support group, educational initiatives, and more. We especially discussed her support group that includes people from many parts of the world and what are some commonalities she's observed and the people she helps. Finally we talked about how all of her advocacy work and involvement led her to being nominated for the National Board of Trustees for the Crohn's & Colitis Foundation here in the US. We discussed how she's using this seat at the table and this platform to raise even more awareness of the needs of the Hispanic/Latino IBD community and so much more.

We really loved getting to know Rocio more during the conversation and we know you'll appreciate all that she does for our community as well!

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:

• Grupo de Apoyo para Adultos con EII
• Article by Rocio in Crohn's & Colitis 360
• Crohn's Disease Patient Experiences and Preferences wit Disease Monitoring: An International Qualitative Study - Crohn's & Colitis 360

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