Bowel Moments

This week we had a great conversation with Stephanie Brenner! Stephanie is a Licensed Clinical Social Worker at Chronic Illness Psychotherapy in Evanston, IL who has 13 years of experience working with clients with chronic illnesses. Through her journey as an IBD patient and clinician, she has developed a passion for helping people with health challenges live their lives to the fullest. We talked to her about how living with her IBD helped her develop a passion for being a therapist for kids and adults with chronic illnesses. We also discussed doing therapy with kids, medical hypnotherapy, medical gaslighting and how she works with people as they take on a new identity as they cope with a new diagnosis. We also discuss the guide for parents of kids with Crohn's that she wrote in coordination with Tina Aswani-Omprakash (Own Your Crohn's, SAIA, etc!). We spent a while talking about how she works with patients who may need to address challenges with healthcare providers who they need to remain connected to.  We discussed so many aspects of mental health and tapped into Steph's professional experience and brain that we'll have to bring her back to talk more about her IBD and living with an ostomy! 

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: 

• The Circle of Care Guidebook for Caregivers of Children and Adolescents Managing Crohn's Disease
• Find Camp Oasis- camp for kids with IBD- Crohn's & Colitis Foundation USA
• Resources from ImproveCareNow- for kids with IBD
• Find an IBD trained therapist- Rome GI Psych
• Episode with Dr. Meredith Craven about hypnotherapy
• Episode with Robin and Hannah Cramer about doing EMDR
• Episode with Courtney Robert, LCSW about EMDR 

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***Warning that this episode discusses eating disorders, disordered eating, and medical trauma.***  This week we spoke with Dr. Jordan Shapiro! Dr. Shapiro is a GI Hospitalist at Peak Gastroenterology Associates in Colorado as well as a private practice GI at Gentle GI in Houston, TX (starting April 1, 2024). Dr. Shapiro also is a yoga instructor and enthusiastic practitioner and so we spend quite a bit of time learning about the practice of yoga that goes beyond the body movements we're probably all familiar with and how adding yoga to your care may be beneficial. He also has expertise in working with patients with eating disorders or disordered eating as well as in trauma-informed care. We talk to him about how he approaches patient care in a empathetic way and how he works with patients who have identified trauma experiences that may impact their care. We also talk to him about how he uses this knowledge and experience to help other providers learn how to create a safe environment for people who may be struggling with trauma responses.  We really enjoyed this conversation with Dr. Shapiro and think you'll learn a lot from him 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: 

• Dr. Tiffany Taft's episode- discusses her research on medical trauma
• Yoga and Meditation video- GI Research Foundation 
• Interesting research article on medical trauma- among the authors is former guest Mara Shapiro- by the Crohn's Colitis Young Adult Network (CCYAN)
• Diet, Culture, and Your Body- Crohn's & Colitis Foundation- USA

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This week Alicia was joined by guest host and past guest, Derek Dodson! They interviewed Jordan B. McConnell! Jordan is a Air Force veteran, IT professional, father and husband who also lives with Crohn's disease! We talked to him about being diagnosed as a young teen and how his disease was presented to his family and how he was able to join the military and how that affected his ability to continue in his military career.  Jordan is also the creator and one of the hosts of the Crohn's Veteran podcast and lifestyle brand. We talked to him about creating the show, recruiting his co-hosts, and all of the amazing guests that they were able to interview as well as the community they created around the show. We also discussed coping with IBD as a male and how that may create situations where one may feel stifled in expressing needs and so much more. We had such a great conversation with Jordan and we can't wait for you to get to know him 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: 

• Jordan's instagram
• Jordan's interview with Amber Tresca at About IBD podcast
• Crohn's Veterans website

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This week we had the absolute pleasure to talk to Dr. David Binion! Dr. Binion is a physician-scientist who is also living with Crohn's disease. He is Co-Director of the IBD Center at the University of Pittsburgh School of Medicine. He was diagnosed with Crohn's when he was a teenager- before the information age and also before there were many treatment for IBD. He has devoted his career to analyzing "Big Data" to figure out how to predict disease outcomes, prognosis and flares. We talked to him about his longitudinal research, what he's learned, and how that's given him hope as an IBD patient. We talked to him about what he's seeing in reclassifying IBD into more subcategories and what that will mean for more effective treatment and also what he sees on the horizon for IBD research. 

We enjoyed getting to know Dr. Binion so much and know that you'll find this conversation as interesting and hopeful 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! ;) 

Link: 

• Dr. Binion's page on winning the Sherman Prize in 2018

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This week we talked to Registered Dietitian, Amalia Karlin! Amalia experienced symptoms very similar to UC but she struggled to get a diagnosis.  Eventually her symptoms got to be so severe she had to have a colectomy and now lives with an ostomy. After that she decided that she as going to devote her career to helping other people living with ostomies to maximize their nutrition and live their best lives. We also talked to her about life with an ostomy, the healthcare system in Canada, and experiencing pregnancy with an ostomy. She has a very dramatic story but we think you'll love meeting her 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: 

• Diet & Nutrition- United Ostomy Association
• Nutrition for Ostomy Patients - video- University of Miami
• Food reference chart for people living with ostomies- United Ostomy Association 

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Welcome to our 100th episode! This week we talked to the renowned Dr. David T. Rubin! Dr. Rubin is the Joseph B. Kirsner Professor of Medicine and a Professor of Pathology, Chief of the Section of Gastroenterology, Hepatology & Nutrition and the Co-Director of the Digestive Diseases Center at The University of Chicago Medicine. 

He also currently serves as an associate faculty member at the MacLean Center for Clinical Medical Ethics, an associate investigator at the University of Chicago Comprehensive Cancer Center and is a member of the University of Chicago Committee on Clinical Pharmacology and Pharmacogenomics. He is the chair of the National Scientific Advisory Committee of the Crohn’s & Colitis Foundation, where he also serves as a Board of Trustees member. He is the deputy chair of the Executive Committee of the International Organization for the Study of Inflammatory Bowel Disease.  In 2018, Dr. Rubin completed the Harvard T.H. Chan School of Public Health Leadership Development Course for Physicians.

Dr. Rubin is a Fellow of the American Gastroenterological Association (AGA), the American College of Gastroenterology (ACG), the American Society for Gastrointestinal Endoscopy (ASGE), the American College of Physicians (ACP), and the Royal College of Physicians (Edinburgh). He is on the Board of Trustees for the ACG. Among numerous awards and honors, Dr. Rubin was chosen by his peers as a member of Best Doctors (recognized for superior clinical ability) and America’s Top Physicians (gastroenterology). Additionally, he twice received the ACG’s Governor’s Award of Excellence in Clinical Research (2003 and 2013), and the UChicago Postgraduate Teaching Award in recognition of significant contributions for fellowship education (2006). In 2012, he received the Crohn’s & Colitis Foundation’s Rosenthal Award, a national leadership award bestowed upon a volunteer who has contributed in an indisputable way to the quality of life of patients and families. He is an Associate Editor of the journal Gastroenterology and Editor-in-Chief of the ACG On-Line Education Universe. In 2020, Dr. Rubin received the Sherman Prize for Excellence in Crohn’s and Colitis.

Dr. Rubin is an editor of a best-selling book Curbside Consultation in IBD which is now in its 3rd edition and an author or coauthor of over 500 articles on treatment and management of IBD, cancer in IBD and novel paradigms, as well as the first author of the 2019 ACG Guidelines for ulcerative colitis. His current research is in the area of novel approaches to monitoring of IBD (wearables and point of care intestinal ultrasound), prevention of progressive complications from uncontrolled inflammation, and a variety of collaborative and translational studies related to the causes of IBD and its complications. 

Episodes from some of Dr. Rubin's UChicago's team: 

• Dr. Alysse Bedell- Gastro Psychologist
• Michele Rubin, APN- JPouch surgical nurse extraordinaire
• Marita Kametas- Ostomy Specialist! 
• Dr. David Choi- IBD Pharmacist

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.

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This week we spoke to Liam Robertson! Liam was diagnosed with UC when he was a young adult but the process was lengthy and filled with times when he was not believed. We talked about what that was like to navigate the health system and his feelings on it. We discussed how he got so involved in social media, how that's helped him cope with flares and complications, and the importance of having a community around you. We also talked about the books that he's written including "More Than Meets the Eye: Living with Ulcerative Colitis" and the kids book series about Jack Jupiter who is a child living with IBD. We talked about what prompted him to write the books and the response he's gotten from people all over the world. We also discussed his job on an oil rig and what that's been like for him to be so far away from medical care with UC. And finally we spoke about him training in muay thai- what got him interested and more. Liam was so much fun to talk to! Go check out his books. 

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" 

• Liam's book- "More Than Meets the Eye: Living with Ulcerative Colitis"
• Liam's newest Jack Jupiter book- "Jack Jupiter- Reindeer Rally" 
• Find all of his books here.

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This week we spoke to Michele Rubin! Michele is an advanced practice nurse and is the Associate APN Director of the IBD Center at the University of Chicago Medicine. She specializes in surgery for IBD and has helped to create a J-Pouch specific clinic. We talked to her about surgery part of the treatment options, J-Pouches and what to expect in recovery, and how she works with patients to ensure they have the best outcomes. We also discussed the research that she's done related to IBD surgery and their efforts to try to predict a patient's response to their J-Pouch and how to treat complications. Finally we talked about how and why a surgeon may choose to hand sew instead of use surgical staples. Michele has been in the IBD space for a long time and has so much knowledge to share and she was such a joy and a light. We could have talked to her for hours. 

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! ;) 

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This week we talked to Ashley Mann! Ashley was diagnosed with Crohn's disease when she was 20 years old but she had been experiencing symptoms when she was in high school. We talked to her about what it was like being a competitive cheerleader with active disease. We talked to hear about what she describes as trying "every medication on the market" and navigating countless surgeries. We discussed her decision to move to a permanent ileostomy and how close she is to living with short-gut syndrome. We talked about how she's had to learn to manage her healthcare and advocate for herself while moving frequently because of her husband's career in the military. We also talked about what it was like to get her care in the military healthcare system and her experience with friend-of-the-show, Dr. Anish Patel. Finally we talked about the importance of making healthcare decisions that you feel are right for you even in the face of differing opinions from the people most important to you. 

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: 

• Our episode with Dr. Anish Patel
• A video about Short Bowel Syndrome- Canadian Society for Gastrointestinal Research 
• 
  

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This week we had the pleasure of talking with Bianca Hernandez! Bianca was diagnosed with Crohn's disease in 2015 and she almost immediately parlayed her diagnosis into advocacy for her community. She worked with her school system to get better access to the private bathroom at her school and rallied and inspired other students affected by IBD to advocate for this in their schools. She was selected to join the National Council of College Leaders program at the Crohn's & Colitis Foundation- USA which allowed her to lead in many other advocacy initiatives including step-therapy reform and Ally's law and to work on ensuring that educational materials developed were properly translated into Spanish. This program also introduced her to life-long friends and other inspiring young people in the IBD Community. We talked about her advocacy work and how her efforts to ask for what she needed lead her to becoming a fierce advocate for the whole IBD community. We discussed the perils of comparing your healthcare decisions and disease with other people's journeys and how to destigmatize medical decisions and to not compare yourself to others. We discussed how IBD impacts the Latinx community and ideas on how to raise awareness about IBD and colon cancer screening within these communities. Bianca was so much fun to talk to and is so inspiring. I know you'll find her passion as infectious 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: 

• Information on the National Council on College Leaders- Crohn's & Colitis Foundation- USA 
• Crohn's & Colitis Foundation- homepage in Spanish
• Ally's Law/ Restroom Access Law- Crohn's & Colitis Foundation- USA
• Information about Step Therapy- Crohn's & Colitis Foundation -USA

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This week we had such a great conversation with Dr. David Schwartzberg! Dr. Schwartzberg is a double-board certified colorectal surgeon at Mather Hospital and Columbia specializing in IBD, pelvic floor conditions, re-operative colorectal surgeries, J-Pouch disorders, and minimally invasive surgical techniques. We talked to him about his passion for colorectal surgery and how he spends any free time he has that's not with his family researching and learning more about it. We talked to him about his drive to find a career that helped people and had a true impact on the world. We discussed his interest in J-Pouches and improving complications that may come with previous surgeries. We explored how some folks that had been diagnosed with UC to start may now have a Crohn's diagnosis post J-Pouch and also upper GI Crohn's disease. We also talked about his love of music and how he and his wife have fostered that love in his 3 boys. We also talked about many other things including the improved technology in buckets but I cut that part out.  Needless to say we laughed, we cried, we went off the rails but I promise you're getting the best part.  We don't think Dr. Schwartzberg could be more more passionate about caring for people living with IBD and their families and we can't wait for you to hear that in this conversation 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: 

• Learn more about Dr. Schwartzberg in this video
• Dr. Schwartzberg explains 3-Part J-Pouch surgery in this video- Empowering Patients LLC
• Special Concerns for People with J-Pouches- UCSF Health
• When Should Chronic Pouchitis be Treated as Crohn's Disease?- Crohn's & Colitis Foundation USA 

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This week we had the pleasure of getting to know Alex Boyd! Alex was diagnosed with UC when she was 26 years old when she thought she had caught a stomach bug that had gotten very aggressive. It was only 2 weeks after her diagnosis that she was advised to have her colon removed and to start her J-Pouch surgery process. We talked to her about the dramatic way that she was introduced to our community and how she worked with her medical team to make this decision. We talk to her about the issues that she's experienced with her J-Pouch and how she's coping with that. We talked to her about how she's focused on her mental health to help with her coping skills and also how she's worked with her employer to get the accommodations that she needs to be the best employee she can be. We also spoke about how living with an illness like this can lead you to examine your life and your relationships and how that can lead you to making some big, and at times scary choices to allow you to grow and lead the life you deserve.  We really enjoyed hearing Alex's perspective and all that she's learned 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 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! ;) 

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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- AdamIBDStory@gmail.com

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*** 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

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***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 

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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

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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

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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

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***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

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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!) 

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