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imPACt

imPACt

By Patient Advisory Council
Welcome to the imPACt Podcast! The Patient Advisory Council (PAC) of ImproveCareNow aims to use this podcast to increase awareness, education, inclusivity, and connection while working towards our goals of diversity, equity, and inclusion. Collaboration between PAC members and guest speakers inside and outside ICN will be at the forefront of our conversations to foster a sense of community through PAC’s advocacy work. Topics will range from patient advocacy to the daily stress of IBD as a patient, and rotating hosts will ensure fresh perspectives! Sit back, relax, and enjoy the imPACt!
Listen on
IBD and Patient-Parent Relationships
In this episode of the imPACt, members of the PAC (patient advisory council) and parent working group (PWG) talk about patient-parent relationships in the context of IBD care and how these relationships evolve. Parents and/or guardians play a huge role in helping pediatric patients with IBD navigate and manage their IBD care. However, as patients grow older and gain independence, they may want to take more of a lead in their own care. This transition often shifts the roles of the parent and the patient in the IBD care team. Lisa and John, parents of a son with Crohn's disease share their perspective as parents and PAC members Shira and Fionna share the patient perspective. We share our own experiences as we become more independent, while at the same time still relying on our parents for certain types of support in our IBD care. We share example of what kinds of parental support have been vital to our physical and mental well-being. Social Media: Instagram and Twitter: @icnpatients Facebook: @ICNPAC Anchor: anchor.fm/icnpatients Spotify: imPACt improvecarenow.org Disclaimer: The information in this podcast is of a general nature. Please do not use information shared here in place of a visit, call, consultation or the advice of a licensed physician or other qualified healthcare provider. The information shared during this podcast should not be relied on to diagnose or treat any health condition. This information does not constitute medical advice and is not an endorsement of specific medications, treatment protocols or diets. Patients and caregivers with health care related questions or concerns are advised to contact a physician or other qualified healthcare provider promptly.
46:18
September 10, 2021
Bad Joints & Sore Stomachs: IBD and Arthritis
Join PAC members Shira and Caitlyn as they discuss IBD associated arthritis with pediatric gastroenterologist Dr. Rachel Bensen and pediatric rheumatology fellow Dr. Sara Patrizi. Joint issues are one of the more common extra-intestinal manifestations in patients with Crohn’s and UC. We cover some basic information about arthritis and IBD, discuss the importance of multidisciplinary care, and Caitlyn and I share a little bit about our personal journeys with arthritis and IBD. Big thank you to Dr Bensen and Dr Patrizi for joining us and look out for more episodes on IBD and extra-intestinal manifestations in the future! Social Media: Instagram and Twitter: @icnpatients Facebook: @ICNPAC Anchor: anchor.fm/icnpatients Spotify: imPACt improvecarenow.org Disclaimer: The information in this podcast is of a general nature. Please do not use information shared here in place of a visit, call, consultation or the advice of a licensed physician or other qualified healthcare provider. The information shared during this podcast should not be relied on to diagnose or treat any health condition. This information does not constitute medical advice and is not an endorsement of specific medications, treatment protocols or diets. Patients and caregivers with health care related questions or concerns are advised to contact a physician or other qualified healthcare provider promptly.
32:40
August 27, 2021
Back to School with IBD
Join PAC members Elise, Leela, Vanessa, and Madeline, on this week's episode about going back to school with IBD. They discuss the importance of getting accommodations in college, and how to manage dealing with infusions and flares during school. They also talk about how they deal with IBD during sports seasons, and how they transition their IBD care and routine into their school one. Be sure to listen and enjoy this episode as the PAC prepares to head back to school! Social Media: Instagram and Twitter: @icnpatients Facebook: @ICNPAC Anchor: anchor.fm/icnpatients Spotify: imPACt improvecarenow.org Disclaimer: The information in this podcast is of a general nature. Please do not use information shared here in place of a visit, call, consultation or the advice of a licensed physician or other qualified healthcare provider. The information shared during this podcast should not be relied on to diagnose or treat any health condition. This information does not constitute medical advice and is not an endorsement of specific medications, treatment protocols or diets. Patients and caregivers with health care related questions or concerns are advised to contact a physician or other qualified healthcare provider promptly.
54:50
August 13, 2021
Transitioning with Dr. Michele Maddux
**Content Warning: this podcast episode includes a discussion about alcohol, tobacco, drugs, sexual activity and birth control as they relate to IBD patient health, care, planning and decision-making.** Episode 11 of the imPACt podcast brings together young adult PAC members and Dr. Michele Maddux, a clinical psychologist at Children’s Mercy Hospital, for a candid discussion about the many aspects of transitioning from pediatric to adult IBD care. PAC members share their experience and how they have learned about more adult topics such as insurance and become more responsible for their IBD care. Dr. Maddux and the PAC talk about important but commonly uncomfortable conversations to have with your doctor regarding alcohol, drugs, sex, and birth control and how to initiate them. They share about valuable resources available for IBD patients transitioning from pediatric to adult care such as the Transition Toolkit and My Health Passport by The Hospital for Sick Children. Resources Mentioned: Transition Toolkit: https://www.improvecarenow.org/transition_to_adult_care My Health Passport by The Hospital for Sick Children: https://teens.aboutkidshealth.ca/Article?contentid=2775&language=English Social Media: Instagram and Twitter: @icnpatients Facebook: @ICNPAC Anchor: anchor.fm/icnpatients Spotify: imPACt improvecarenow.org Disclaimer: The information in this podcast is of a general nature. Please do not use information shared here in place of a visit, call, consultation or the advice of a licensed physician or other qualified healthcare provider. The information shared during this podcast should not be relied on to diagnose or treat any health condition. This information does not constitute medical advice and is not an endorsement of specific medications, treatment protocols or diets. Patients and caregivers with health care related questions or concerns are advised to contact a physician or other qualified healthcare provider promptly.
43:16
July 30, 2021
IBD, Body Image, and Relationships with Food Pt. 2 Ft. Brittany-Roman Green
Disclaimer: This episode discusses body image, eating disorders, and weight. We encourage our audience to listen at their own discretion. Join us (Maha, Maddie, and Fionna) as we continue our discussion from Episode 2 on IBD, Body Image, and Relationships with Food. This time we have special guest, Brittany Roman-Green, a registered dietician and certified personal trainer specializing in gastrointestinal conditions including Crohn’s disease and ulcerative colitis. Brittany shares her personal journey with IBD, how she sees the effect of IBD on relationships with food and body image in her practice, and gives some tips on how to start working on your relationship with food and your body. Social Media: Instagram and Twitter: @icnpatients Facebook: @ICNPAC Anchor: anchor.fm/icnpatients Spotify: imPACt improvecarenow.org Disclaimer: The information in this podcast is of a general nature. Please do not use information shared here in place of a visit, call, consultation or the advice of a licensed physician or other qualified healthcare provider. The information shared during this podcast should not be relied on to diagnose or treat any health condition. This information does not constitute medical advice and is not an endorsement of specific medications, treatment protocols or diets. Patients and caregivers with health care related questions or concerns are advised to contact a physician or other qualified healthcare provider promptly.
41:34
July 16, 2021
GI Psychology featuring PAC Alumna Dr. Jennie David
Join PAC members Maha and Madeline as they talk to GI Psychologist Dr. Jennie David about what GI psychology is! Social Media:  Instagram and Twitter: @icnpatients  Facebook: @ICNPAC  Anchor: anchor.fm/icnpatients  Spotify: imPACt improvecarenow.org  Disclaimer: The information in this podcast is of a general nature. Please do not use information shared here in place of a visit, call, consultation or the advice of a licensed physician or other qualified healthcare provider. The information shared during this podcast should not be relied on to diagnose or treat any health condition. This information does not constitute medical advice and is not an endorsement of specific medications, treatment protocols or diets. Patients and caregivers with health care related questions or concerns are advised to contact a physician or other qualified healthcare provider promptly.
52:27
July 2, 2021
Queer, Sick, and Proud
As a disclaimer, this podcast episode includes brief mentions of sex education and substance use. Join us for Episode 8 of the imPACt podcast! PAC members Anya, Shira, and Avery discuss pride month and how queerness and IBD are related! They share their thoughts on the importance of validation both as queer individuals and patients and talk about pride and accessibility. Listen in to hear some of their experiences as well in health care settings as queer IBD patients and advocates. Hannah Witton's YouTube channel: https://www.youtube.com/user/hannahgirasol Social Media: Instagram and Twitter: @icnpatients Facebook: @ICNPAC Anchor: anchor.fm/icnpatients Spotify: imPACt improvecarenow.org Disclaimer: The information in this podcast is of a general nature. Please do not use information shared here in place of a visit, call, consultation or the advice of a licensed physician or other qualified healthcare provider. The information shared during this podcast should not be relied on to diagnose or treat any health condition. This information does not constitute medical advice and is not an endorsement of specific medications, treatment protocols or diets. Patients and caregivers with health care related questions or concerns are advised to contact a physician or other qualified healthcare provider promptly.
29:19
June 18, 2021
IBD and Identity
Listen in as Becky, Maddie, and Fionna talk about the complexity of IBD and identity. We share how IBD and identity interconnect and impact how patients connect with others, including the ways our identities impact our IBD care. This episode highlights the individuality of identity and how we identify with IBD as patients. Social Media: Instagram and Twitter: @icnpatients Facebook: @ICNPAC Anchor: anchor.fm/icnpatients Spotify: imPACt improvecarenow.org Disclaimer: The information in this podcast is of a general nature. Please do not use information shared here in place of a visit, call, consultation or the advice of a licensed physician or other qualified healthcare provider. The information shared during this podcast should not be relied on to diagnose or treat any health condition. This information does not constitute medical advice and is not an endorsement of specific medications, treatment protocols or diets. Patients and caregivers with health care related questions or concerns are advised to contact a physician or other qualified healthcare provider promptly.
34:03
June 4, 2021
World IBD Day--Let's Talk About Advocacy!
This weeks imPACt podcast is a special one coming out on World IBD Day. We have asked PAC members to send in short recordings discussing "Why talking and advocating about IBD is important to you". Listen to this special episode to hear why our PAC members love to advocate for IBD. Social Media: Instagram and Twitter: @icnpatients Facebook: @ICNPAC Anchor: anchor.fm/icnpatients Spotify: imPACt improvecarenow.org Disclaimer: The information in this podcast is of a general nature. Please do not use information shared here in place of a visit, call, consultation or the advice of a licensed physician or other qualified healthcare provider. The information shared during this podcast should not be relied on to diagnose or treat any health condition. This information does not constitute medical advice and is not an endorsement of specific medications, treatment protocols or diets. Patients and caregivers with health care related questions or concerns are advised to contact a physician or other qualified healthcare provider promptly.
09:14
May 19, 2021
School with IBD
Vanessa, PAC co-chair of communications, student, and tennis player, leads a conversation about managing IBD and school with PAC member Fionna. Join us as we talk about IBD and how we have advocated for ourselves at school and while participating in sports! Social Media: Instagram and Twitter: @icnpatients Facebook: @ICNPAC Anchor: anchor.fm/icnpatients Spotify profile: Patient Advisory Council: imPACt https://open.spotify.com/show/79wyCLVeqLjzoEDV2cYixv improvecarenow.org Disclaimer: The information in this podcast is of a general nature. Please do not use information shared here in place of a visit, call, consultation or the advice of a licensed physician or other qualified healthcare provider. The information shared during this podcast should not be relied on to diagnose or treat any health condition. This information does not constitute medical advice and is not an endorsement of specific medications, treatment protocols or diets. Patients and caregivers with health care related questions or concerns are advised to contact a physician or other qualified healthcare provider promptly.
26:34
April 30, 2021
Self-Advocacy and Transition with PAC Alumna Dr. Sami Kennedy
Join PAC members Elise and Seth with special guest, and PAC alumna, Sami as they talk about self-advocacy and pediatric-to-adult transition and transfer of care. As both an IBD patient and now a physician, Sami shares her unique perspective on advocacy and transition. These topics have recently been the themes of some PAC led sessions at the Fall 2020 and Spring 2021 ICN Community Conferences. As one of the first three patients to attend an ICN Community Conference and a former PAC co-chair, Sami has embraced being a patient advocate. Elise, Seth, and Sami share how to embrace the role of a patient advocate especially in terms of self-advocacy. Social Media: Instagram and Twitter: @icnpatients Facebook: @ICNPAC Anchor: anchor.fm/icnpatients Spotify profile: Patient Advisory Council: imPACt https://open.spotify.com/show/79wyCLVeqLjzoEDV2cYixv improvecarenow.org Disclaimer: The information in this podcast is of a general nature. Please do not use information shared here in place of a visit, call, consultation or the advice of a licensed physician or other qualified healthcare provider. The information shared during this podcast should not be relied on to diagnose or treat any health condition. This information does not constitute medical advice and is not an endorsement of specific medications, treatment protocols or diets. Patients and caregivers with health care related questions or concerns are advised to contact a physician or other qualified healthcare provider promptly.
32:26
April 16, 2021
Resilience with IBD
In this episode, PAC members Nour and Anya have a post conference discussion about their presentations. They talk about their experiences with flares, and being able to give patient perspectives to doctors and adults about these problems. They also talk about adjustments they make in daily life because of flares, and talk about how with IBD you have to be resilient. Listen to this episode to here all about Nour and Anya’s perspective around IBD, and how it contributed to their conference presentations. Social Media: Instagram and Twitter: @icnpatients Facebook: @ICNPAC Anchor: anchor.fm/icnpatients Spotify profile: Patient Advisory Council: imPACt https://open.spotify.com/show/79wyCLVeqLjzoEDV2cYixv improvecarenow.org Disclaimer: The information in this podcast is of a general nature. Please do not use information shared here in place of a visit, call, consultation or the advice of a licensed physician or other qualified healthcare provider. The information shared during this podcast should not be relied on to diagnose or treat any health condition. This information does not constitute medical advice and is not an endorsement of specific medications, treatment protocols or diets. Patients and caregivers with health care related questions or concerns are advised to contact a physician or other qualified healthcare provider promptly.
25:43
April 2, 2021
The Impact of IBD on Body Image and Relationships with Food
PAC members Maddie, Maha, and Fionna come together to discuss how IBD has affected their relationship with food and body image and the strategies that patient care can incorporate to address these sensitive topics. Social Media: Instagram and Twitter: @icnpatients Facebook: @ICNPAC Anchor: anchor.fm/icnpatients Spotify profile: Patient Advisory Council: imPACt https://open.spotify.com/show/79wyCLVeqLjzoEDV2cYixv improvecarenow.org Disclaimer: The information in this podcast is of a general nature. Please do not use information shared here in place of a visit, call, consultation or the advice of a licensed physician or other qualified healthcare provider. The information shared during this podcast should not be relied on to diagnose or treat any health condition. This information does not constitute medical advice and is not an endorsement of specific medications, treatment protocols or diets. Patients and caregivers with health care related questions or concerns are advised to contact a physician or other qualified healthcare provider promptly.
37:33
March 19, 2021
The PAC: Where We've Been and Where We're Going
Meet Becky and Maddie, the Co-Chairs of the Patient Advisory Council. This episode's host, Robbie, leads a conversation about the PAC's imPACt and some memorable moments from being a patient advocate. Social Media: Instagram and Twitter: @icnpatients Facebook: @ICNPAC Anchor: anchor.fm/icnpatients Spotify profile: Patient Advisory Council: imPACt https://open.spotify.com/show/79wyCLVeqLjzoEDV2cYixv improvecarenow.org Disclaimer: The information in this podcast is of a general nature. Please do not use information shared here in place of a visit, call, consultation or the advice of a licensed physician or other qualified healthcare provider. The information shared during this podcast should not be relied on to diagnose or treat any health condition. This information does not constitute medical advice and is not an endorsement of specific medications, treatment protocols or diets. Patients and caregivers with health care related questions or concerns are advised to contact a physician or other qualified healthcare provider promptly.
32:47
March 5, 2021
Trailer: Introducing imPACt!
In this episode the Patient Advisory Council (PAC) Co-Chairs of Communication, Vanessa and Fionna, introduce the imPACt podcast. The first episode will be released in a week and following episodes will be posted every other week. The imPACt podcast will be available on Spotify, Apple Podcasts, and Anchor. Social Media: Instagram and Twitter: @icnpatients Facebook: @ICNPAC Anchor: anchor.fm/icnpatients Spotify: imPACt improvecarenow.org Disclaimer: The information in this podcast is of a general nature. Please do not use information shared here in place of a visit, call, consultation or the advice of a licensed physician or other qualified healthcare provider. The information shared during this podcast should not be relied on to diagnose or treat any health condition. This information does not constitute medical advice and is not an endorsement of specific medications, treatment protocols or diets. Patients and caregivers with health care related questions or concerns are advised to contact a physician or other qualified healthcare provider promptly.
05:26
February 26, 2021