Send us Fan Mail

This week we spoke to Adam Finkelstein! Adam was diagnosed with UC when he was just 2 years old. We talk to him about what it was like growing up with UC and dealing with it as a child. We spoke about how his experiences with the medical system prompted his interest in writing a children's book for other kids with IBD called "Up and Adam: A Patient's Experience on Winning with IBD." Also how it sparked his interest in becoming a physician and especially a surgeon. Finally we talked about Adam's experience as a Camp Oasis counselor, how he was able to share his book with all of the kids this summer, and what their reactions were and the conversations it started. Adam was a joy and we think he'll make an extremely empathetic doctor some day soon! 

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 Adam's book on Barnes & Noble 
• Adam's episode on the About IBD podcast
• Adam's email- [email protected]

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

Send us Fan Mail

*** Warning: This episode discusses sexuality, sexual health and sexual trauma and may not be appropriate for all audiences.*** This week we spoke to Dr. Alyse Bedell! Dr. Bedell specializes in  psychogastroenterology and is a sexual health counselor at the University of Chicago IBD Center. She has specialized training and knowledge in how stress, anxiety and depression can affect digestive health. Dr. Bedell works with patients struggling with a range of gastrointestinal conditions, such as inflammatory bowel disease. and using her expertise to help her patients cope with their condition and improve their gastrointestinal symptoms. Dr. Bedell is able to assist patients in better understanding and managing their symptoms through a holistic approach that addresses both physical and emotional components. 

We spoke to her about sexual health and IBD including how sexuality can be affected by IBD and disease symptoms. We talked about intimacy and how people with IBD can increase their intimacy with their partners, working with people in the LGBTQI+ community, working with people who have experience sexual trauma and how to educate providers in responding empathetically to that experience, and so much more. This was such an interesting and educational 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: 

•  AASECT- American Association of Sexuality Educators, Counselors and Therapists- find a sexual health therapist. 
• Sex and Intimacy Fact Sheet- Crohn's & Colitis Foundation- USA 
• Sex and Relationships- Crohn's & Colitis UK

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

Send us Fan Mail

***This episode includes discussions about suicide and suicidal ideation and may not be appropriate for some people.****  This week we had a really deep conversation with our friend Derek Dodson! Derek has been living with Crohn's disease for 40 years and so we talk to him about what it was like to live with Crohn's before there were any good treatment options, what it was like being a teenager on steroids, and what is has been like to see so much scientific and treatment advances. We discussed his family history with IBD including his grandfather's "ileitis" and his daughter Maurie Jhaveri's diagnosis and how her diagnosis compelled him to get more involved in the IBD community. We talk about his strong Christian faith and how it has been a source of comfort and solace during his hardest times but also how it has changed his faith, how he prays, and how it helped him come up with his life motto of "make it count." We also talked about how living with Crohn's for so long, multiple surgeries, and all his treatments have had lasting impacts on his health in other ways including some vitamin deficiencies. Finally we discuss how Derek's IBD has affected his mental health including his coping with suicidal thoughts and some very significant hopelessness. And how his faith, his family, his community, and working with a therapist has helped him cope and reframe living with his 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: 

• National Suicide and Crisis Lifeline- If you or a loved one is struggling with suicidal thoughts, please call 988- US only
• A list of international suicide helplines
• Resources for Mental Health- Crohn's & Colitis Foundation- USA
• Find a therapist familiar with IBD- Rome Foundation 

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

Send us Fan Mail

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 Fan Mail

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 Fan Mail

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 Fan Mail

***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 Fan Mail

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 Fan Mail

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 Fan Mail

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!