Send us a text

This week we spoke to Dr. Edward L. Barnes! Dr. Barnes is a gastroenterologist and clinical investigator dedicated to improving the care of patients with inflammatory bowel disease at the University of North Carolina School of Medicine.  Dr. Barnes is also the 2021 Sherman Emerging Leader Prize Recipient. He has a particular interest in improving outcomes for patients with inflammatory bowel disease who require a colectomy and an ileal pouch-anal anastomosis. Patients with an ileal pouch-anal anastomosis may experience significant complications after surgery, including the development of new inflammatory conditions of the pouch. Dr. Barnes has developed multiple new research strategies to identify risk profiles for those patients at greatest risk for adverse outcomes and strategies to improve the effectiveness of available therapies for pouch-related disorders. 

We talked to him about his research and work on pouch disorders. 

Links: 

• Dr. Barnes won the 2021 Sherman Emerging Leader Prize! 
• Information about J-Pouch surgery and possible complications- Crohn's & Colitis Foundation USA
• Special Concerns for People with J-Pouches- UCSF Health

Let's get social!!
Follow us on Instagram!
Follow us on Facebook!
Follow us on Twitter!

Send us a text

This week we talked to Myisha Malone-King! Myisha is the brains and moderator behind the Facebook group Game of Crohn's n Chronic Illness! The goal of this group is to offer support and knowledgeable information about inflammatory bowel disease and to inspire others to not be afraid or hide because of a chronic illness. We talk to her about what discussions happen on the page and how it's helped her to support and educate other people living with IBD. We discuss her diagnosis process and how her Crohn's affected her pregnancies and how that led to her considering an abortion. We talked to her about everything that she considered as she made that decision and how difficult it was knowing that her health and her life could be so incredibly impacted by it. We talked to her about the pain she experiences with her Crohn's and how difficult it was to find a doctor that would believe her and help find the right treatment plan. We talked to her about grief and the grief that goes along with living with a chronic illness. Finally, we talk about journaling and writing poetry as a way to process living with a chronic illness. We discuss Myisha's new book of poetry called "Footprints of the Soul", where you can find your copy, and she reads us one of her beautiful poems. 

This was such a great conversation and Myisha is a treasure. 

Just a warning that we discuss abortion in this episode so it may not be appropriate for all audiences. 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: 

• We reference our episode with Nicole Williams, LPC. You can find it here.
• Myisha's Twitter account
• Myisha's book- Footprints of the Soul
• Chronic Illness and Grief: The Dual Process Model of Coping with Loss- Psychology Today by Katie Willard Virant MSW, JD, LCSW- Chronically Me
• Myisha on the Patients Rising show- Medical Gaslighting and Self Advocacy

Let's get social!!
Follow us on Instagram!
Follow us on Facebook!
Follow us on Twitter!

Send us a text

This week we spoke to Marita Kametas, MSN, APN, FNP-BC, CMSRN, COCN! Marita is an Advanced Practice Provider Leader, IBD APN, and Ostomy Specialist in the IBD Center at the University of Chicago. We talked to her about all things ostomy! We discussed how providers can speak to patients about all of their treatment options including surgery and ostomies and how that language can really help to make patients feel more comfortable and in control. We talked about how she helps patients prepare for surgery and to deal with ostomies after surgery. We discussed the research she's doing into new ostomy technology and what she'd love to see advance in this area. We also talked about pregnancies with ostomies, complications one can have with an ostomy and so much more. It was super interesting and I think you'll learn just 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: 

• United Ostomy Association of America
• A Guide to Ostomy Bag Care - includes videos! UChicago Medicine
• Ostomy Tips & Tricks- Crohn's & Colitis Foundation USA
• 5 Tips for Navigating Life With an Ostomy- Katelyn Wilson, RD- GastroGirl

Let's get social!!
Follow us on Instagram!
Follow us on Facebook!
Follow us on Twitter!

Send us a text

***Warning that this episode includes an open discussion about sexuality and may not be suitable for all audiences.***
This week we talked to the lovely Julia Gaspare-Pruchnicki! Julia is a medical student that was initially diagnosed with UC when she was 9 years old. She went on to have a colectomy and J-Pouch when she was 10 years old. After struggling with pouchitis and fistulas, Julia's diagnosis was changed to Crohn's disease. We talk to her about the treatments she's tried for her fistulizing disease including clinical trials with stem cells. We discussed the accommodations that she took advantage of when she was doing her undergraduate degree as well as medical school and how that has helped her having piece of mind. We talk to her about her passion for becoming a family medicine doctor and how she feels like she can use what she's learned from her Crohn's to help other people navigate their health. We discuss her mom's UC and J-Pouch and how that helped her feel like she had a partner and advocate as she navigated her disease. And finally we had a really frank conversation about how IBD and especially fistulas can affect your sex life and sexuality. We really appreciate Julia's willingness to be so open with this part of her life and her disease.  

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: 

• Sex and Relationships- Crohn's & Colitis UK
• Sexuality and IBD- video from Canadian Society of Intestinal Research
• Perianal Fistula and Crohn's - video from Mayo Clinic

Let's get social!!
Follow us on Instagram!
Follow us on Facebook!
Follow us on Twitter!

Send us a text

This week we spoke to IBD and Rare Disease advocate, Aaron Blocker! Aaron lives with Crohn's disease as well as an ultra-rare disease called Hypophosphatasia. We talked to him about managing both illnesses and coordinating his care. We talked to him about how he set up his very popular and informative Facebook community called Support for Crohn's & Ulcerative Colitis and how he monitors this page to keep the conversations informative, supportive, and as accurate as possible. We also talked to him about his degree in biomedical research and how he uses it to help translate complicated scientific information for the patient population and to help educate our community. Additionally this has helped him engage with the pharmaceutical and scientific community professionally to help with patient education, marketing and much more. Finally we talked to him about parenting his three very small children, including twin babies (!), while living with two chronic illnesses. 

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: 

• Support for Crohn's and Ulcerative Colitis Facebook page
• Information on Hypophosphatasia- National Organization for Rare Diseases
• Aaron's page from IBD Social Circle
• IBD Dads: What These Patient Heroes Have to Say About Fatherhood- Lights, Camera, Crohn's Blog- Natalie Hayden
• Natalie Hayden's episode 
• Fatherhood and IBD with Jordan McConnell- About IBD Podcast with Amber Tresca (Look for a BM episode with Jordan soon!) 

Let's get social!!
Follow us on Instagram!
Follow us on Facebook!
Follow us on Twitter!

Send us a text

This week we had such an interesting and fun conversation with Dr. Meredith Craven! Dr. Craven is a licensed health psychologist and she's the Director of GI Health Psychology in the Division of Gastroenterology and Hepatology at Stanford Health. We spent quite a bit of time talking about gut directed hypnotherapy and other brain-gut behavioral health techniques. We also had a really interesting discussion about Dr. Craven's research and work on health disparities and diversity, equity, inclusion, and justice. We also talked about her interest in and practice of yoga and how she's helped her patients use it as well as diaphragmatic breathing and mindfulness to manage their IBD.

We could have talked to Dr. Craven for hours and hours. I hope you learn as much as we did from this 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: 

• A body scan meditation video with Dr. Craven
• Coping Strategies to Improve Mental Health- Crohn's & Colitis Foundation-USA
• Racial Disparities Seen in Use of IBD Medical Therapy- Gastroenterology & Endoscopy News
• How Healthcare Algorithms and AI Can Help and Harm- Johns Hopkins Bloomberg School of Public Health

Let's get social!!
Follow us on Instagram!
Follow us on Facebook!
Follow us on Twitter!

Send us a text

This week we brought back friend of the show and former guest, Hannah Cramer! Hannah and Robin have both been using Eye Movement Desensitization and Reprocessing (EMDR) to help them with their medical trauma.  EMDR is a psychotherapeutic technique used to help people process and recover from trauma and problematic traumatic memories that may interfere with life. They've found EMDR to be incredibly helpful and very quick to alleviate some really significant anxiety and trauma associated with their disease and with their experiences with the medical system. We discussed how the process has worked for them, what to expect if you're considering this, pros and cons to this technique, and how they've talked to others about it. It was super interesting to hear their different experiences but also so encouraging to hear how it helped them.

If you want to know more about EMDR from a therapist that uses it with IBD patients, please go back to episode 33 with Courtney Robert. If you want to hear more of Hannah's story, go back to episode 13.

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: 

• What is EMDR? - From EMDR Institute, Inc. 

Let's get social!!
Follow us on Instagram!
Follow us on Facebook!
Follow us on Twitter!

Send us a text

This week we had such an informative conversation with Dr. David Choi! Dr. Choi is a Specialty Clinical Pharmacist and the Associate Director of the IBD Center at UChicago. We talked to him about his role as part of the IBD care team and how he plays an important part in patient advocacy and in getting the patient the treatment they and their provider think is best. We discussed his research in pharmacist-initiated interventions and prior authorizations and in other insurance issues in patient care and what they learned from this work. We talked a lot about biologic medications and biosimilars and what patients should know about these options and about switching to one. We also discussed supplements and how your pharmacist can help you figure out what is safe for you to use or what might have medication interactions. Finally we talked to him about training new or more pharmacists to do specialty IBD care and about networking with other IBD Pharmacists through the IBD Pharmacist Network. This was such an interesting conversation and I think you'll learn 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: 

• Biosimilars: What You Should Know- Crohn's & Colitis Foundation- USA
• Biologics and Biosimilar Medications for Inflammatory Bowel Disease- Crohn's Colitis Canada

Let's get social!!
Follow us on Instagram!
Follow us on Facebook!
Follow us on Twitter!

Send us a text

This week we spoke to Nicole and Luke Pavlin! Nicole is living with Crohn's disease and Luke is her husband and care partner. We talked about the process for her to get diagnosed and the unusual birth defect she has that complicated her case. We talked about her ongoing struggles with food anxiety and medical trauma and how the GRITT- IBD program and staff have helped her cope. We talked to her about how her Dietitian and her mental health team have worked together to help her. We talked about her participation in a couple of research studies being put on by Mount Sinai including one with wearable devices.  Nicole talked about why participating in these types of studies was especially important to her as a science educator and to help her feel like she was helping others. We also talked about her volunteer role with the nonprofit Nutrition 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: 

• Wearable Devices and IBD: Hear One Woman's Experience as a Citizen Scientist
• Mount Sinai IBD Center Innovative Programs (GRITT)
• Nutritional Therapy for IBD
• Meckel's diverticulum

Let's get social!!
Follow us on Instagram!
Follow us on Facebook!
Follow us on Twitter!

Send us a text

This week we talked to Nir Salomon! Nir is the Founder and Director of the Integrative Gastroenterology unit at Sheba Medical Center in Israel. He's also the Co-Founder and Head of R&D at Evinature. Nir has done research for more than a decade on neutraceuticals for the treatment of IBD. We talked to him about his training in this area, what neutraceuticals are and how they and other types of integrative medicines are used in IBD care. We talked to him about how he chose the items that he decided to research and how he developed Evinature's CurQD protocol. We discussed the clinical trials that he went through and how this protocol can be helpful to the treatment regime of IBD. Finally we talked about research in Israel and why they may be able to research things that are not as readily studied in the United State. It was a really interesting conversation! Enjoy!

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! ;)

Let's get social!!
Follow us on Instagram!
Follow us on Facebook!
Follow us on Twitter!