Afleveringen
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Stephanie Gish, host of the Crohn's Fitness Food podcast, gives the details of her journey with Crohn's disease and IGA nephropathy. Stephanie's Crohn's symptoms began in 2003, but she was initially misdiagnosed with an anal fissure. After being discharged from the Army for medical reasons unrelated to IBD, she went through years of fragmented care, and finally received a Crohn's diagnosis in 2009. Stephanie brought her knowledge of health and fitness to bear in managing Crohn's, but the diagnosis of IGA nephropathy had her changing course and rethinking her approach.
Find Stephanie Gish at:
Web: Crohn's Fitness Food Facebook: @crohnsfitnessfood Podcast: Crohn's Fitness Food LinkedIn: @stephlivsey Instagram: @crohnsfitnessfoodFind Amber J Tresca at:
AboutIBD.com: About IBD Verywell Health: Verywell Health Facebook: @aboutIBD Twitter: @aboutIBD Pinterest: @aboutibd Instagram: @about_IBD YouTube: @AboutIBD https://www.threads.net/@about_ibdFind Mac Cooney (mix, sound design, and theme music) at:
Facebook: @maccooneycomposer Instagram: @maccooneycomposer YouTube: @MacCooneyComposer Web: Cooney Studio Theme music, IBD Dance Party, is from ©Cooney Studio.Episode transcript and more information at: https://bit.ly/AIBD161
These show notes contain affiliate links. If you choose to purchase after clicking a link, Mal and Tal Enterprises, LLC may receive a commission at no extra cost to you.
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Amber interviews Alison McGauley, a teacher and author of "Kenzie's Little Tree," a children's book about a girl whose mother lives with chronic illness. Alison shares her journey with ulcerative colitis, irritable bowel syndrome (IBS), and ankylosing spondylitis, and how her hospitalization impacted her two daughters. She emphasizes the importance of talking about illness with children to help them process their emotions. Alison’s book, set to release in March 2025, aims to provide a narrative for families dealing with chronic illness. Pre-orders are available, with proceeds donated to Crohn's and Colitis Canada and the Arthritis Society.
Buy Alison's book: https://www.alisonmcgauley.com/books/my-books
Find Alison McGauley at:
Web: https://www.alisonmcgauley.com Facebook: @author.alison.mcgauley Twitter: @AlisonMcgauley YouTube: @AlisonMcGauleyAuthor Instagram: @alisonmcgauleyFind Amber J Tresca at:
AboutIBD.com: About IBD Verywell Health: Verywell Health Facebook: @aboutIBD Twitter: @aboutIBD Pinterest: @aboutibd Instagram: @about_IBD YouTube: @AboutIBD https://www.threads.net/@about_ibdFind Mac Cooney (mix, sound design, and theme music) at:
Facebook: @maccooneycomposer Instagram: @maccooneycomposer YouTube: @MacCooneyComposer Web: Cooney Studio Theme music, IBD Dance Party, is from ©Cooney Studio.Episode transcript and more information at: https://bit.ly/AIBD160
These show notes contain affiliate links. If you choose to purchase after clicking a link, Mal and Tal Enterprises, LLC may receive a commission at no extra cost to you.
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Zijn er afleveringen die ontbreken?
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Is it surprising to learn that some people living with IBD choose to have ostomy surgery? Hannah, a 24-year-old woman, shares her journey through the initial symptoms of IBD at the age of 15, to getting a diagnosis of ulcerative colitis. She describes how her symptoms worsened after diagnosis, including bleeding, bowel urgency, and fatigue, which led to multiple hospitalizations. Hannah advocated for surgery to treat her pancolitis, despite an initial difference of opinion with her medical team. After surgery, Hannah's symptoms were significantly improved and she regained a sense of normalcy in her life. Hannah discusses the pros and cons of choosing an ostomy over a J-pouch, the importance of quality of life, and how surgery could impact her future fertility.
Concepts discussed on this episode:
Yang X, He M, Tang Q, et al. Assessment of anti-inflammatory efficacy of acupuncture in patients with inflammatory bowel disease: A systematic review and meta-analysis. Complement Ther Med. 2023;74:102946. doi:10.1016/j.ctim.2023.102946. Bao C, Wu L, Wang D, et al. Acupuncture improves the symptoms, intestinal microbiota, and inflammation of patients with mild to moderate Crohn's disease: A randomized controlled trial. EClinicalMedicine. 2022;45:101300. doi:10.1016/j.eclinm.2022.101300. Bae JH, Kang SY, You SE, Jeong HI, Jang S, Kim KH. The Effects of Acupuncture on Crohn's Disease: a systematic review and meta-analysis. J Pharmacopuncture. 2023;26(3):211-226. doi:10.3831/KPI.2023.26.3.211.Find Hannah Martin-Spencer on:
Instagram: @hans_colitisjourneyFind Amber J Tresca at:
AboutIBD.com: About IBD Verywell Health: Verywell Health Facebook: @aboutIBD Twitter: @aboutIBD Pinterest: @aboutibd Instagram: @about_IBD YouTube: @AboutIBD https://www.threads.net/@about_ibdFind Mac Cooney (mix, sound design, and theme music) at:
Facebook: @maccooneycomposer Instagram: @maccooneycomposer YouTube: @MacCooneyComposer Web: Cooney Studio Theme music, IBD Dance Party, is from ©Cooney Studio.Episode transcript and more information at: https://bit.ly/AIBD159
These show notes contain affiliate links. If you choose to purchase after clicking a link, Mal and Tal Enterprises, LLC may receive a commission at no extra cost to you.
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Christina King shares her journey with being diagnosed with Crohn's disease in 2021. She was misdiagnosed with gastritis and hemorrhoids, until her severe symptoms of rectal bleeding and weight loss, plus multiple trips to the emergency department led to a hospitalization. An in-patient colonoscopy finally led to a diagnosis of Crohn's, and she was finally able to get treatment and improve. She was unable to go to school with her high school graduating class, and is now ready to start pursuing her dream of becoming a nurse. Christina tells Amber where she went for information in the early days after diagnosis and how she's approaching accommodations for IBD as she begins school.
Find Christina King at:
Twitter: @cking5498 Instagram: @christina_king227 SnapChat: @christinaking16Find Amber J Tresca at:
AboutIBD.com: About IBD Verywell Health: Verywell Health Facebook: @aboutIBD Twitter: @aboutIBD Instagram: @about_IBD YouTube: @AboutIBD Threads: @about_IBDFind Mac Cooney (mix, sound design, and theme music) at:
Facebook: @maccooneycomposer Instagram: @maccooneycomposer YouTube: @MacCooneyComposer Web: Cooney Studio Theme music, IBD Dance Party, is from ©Cooney Studio.Episode transcript and more information at: https://bit.ly/AIBD158
These show notes contain affiliate links. If you choose to purchase after clicking a link, Mal and Tal Enterprises, LLC may receive a commission at no extra cost to you.
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The relationship between patient and physician in inflammatory bowel disease (IBD, Crohn's disease, ulcerative colitis) is so critical to the success of the management of the disease. Both the patient and the physician have roles to play in developing and maintaining a good working relationship. One such example of a truly special and inspirational patient-physician relationship is illustrated here between Dr Julie Spivack, a gastroenterologist with Connecticut GI, and Rosa, her patient. Rosa and Dr Spivack discuss their close bond and how the listening, empathy, honesty, and open-mindedness work to build trust and achieve successful outcomes in patient-physician relationships
Find Julie Spivack, MD at:
Web: Connecticut GIFind Amber J Tresca at:
AboutIBD.com: About IBD Verywell: Verywell Health Facebook: @aboutIBD Twitter: @aboutIBD Pinterest: @aboutibd Instagram: @about_IBD YouTube: @AboutIBDFind Mac Cooney (mix, sound design, and theme music) at:
Facebook: @maccooneycomposer Instagram: @maccooneycomposer YouTube: @MacCooneyComposer Web: Cooney Studio Theme music, IBD Dance Party, is from ©Cooney Studio.Episode transcript and more information at: https://bit.ly/AIBD157
These show notes contain affiliate links. If you choose to purchase after clicking a link, Mal and Tal Enterprises, LLC may receive a commission at no extra cost to you.
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Amber Tresca and Katie Connelly discuss the challenges and importance of workplace accommodations for individuals with inflammatory bowel disease (IBD). Katie has been through the process of asking for accommodations with different employers and shares her personal experience, emphasizing the need for understanding the Americans with Disabilities Act (ADA). She relates her experience and gives advice to both employers and employees on how to manage the accommodation journey. Plus, she gives the resources that she found most helpful to help her learn about her rights as an employee.
Find Katie Connelly at:
Spotify: Katie Connelly Web: Badass With a Bad Ass LinkedIn: Katie Connelly Instagram: @badass.w.a.bad.assFind Amber J Tresca at:
AboutIBD.com: About IBD Verywell: Verywell Health Facebook: @aboutIBD Twitter: @aboutIBD Pinterest: @aboutibd Instagram: @about_IBD YouTube: @AboutIBDFind Mac Cooney (mix, sound design, and theme music) at:
Facebook: @maccooneycomposer Instagram: @maccooneycomposer YouTube: @MacCooneyComposer Web: Cooney Studio Theme music, IBD Dance Party, is from ©Cooney Studio.Episode transcript and more information at: https://bit.ly/AIBD156
These show notes contain affiliate links. If you choose to purchase after clicking a link, Mal and Tal Enterprises, LLC may receive a commission at no extra cost to you.
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Amber is joined by Stacy Dylan, co-founder and executive director of Connecting to Cure Crohn's and Colitis (CtoC). CtoC is a patient advocacy group focused on addressing unmet needs in the IBD community. Stacy founded CtoC to help other families after her son was diagnosed with Crohn's disease. CtoC offers support groups, mentorship programs, and gut-friendly workouts. Stacy offers advice to parents of children with IBD, encouraging them to take things one step at a time and not be overwhelmed by information from the internet.
Follow Connecting to Cure:
Web: https://www.connectingtocure.org Twitter: @connecttocure Instagram: @connectingtocure Facebook: @ConnectingToCureFollow Stacy’s Medium page at: https://stacyjdylan.medium.com.
Find Amber J Tresca at:
AboutIBD.com: About IBD Verywell: Verywell Health Facebook: @aboutIBD Twitter: @aboutIBD Pinterest: @aboutibd Instagram: @about_IBD YouTube: @AboutIBDFind Mac Cooney (mix, sound design, and theme music) at:
Facebook: @maccooneycomposer Instagram: @maccooneycomposer YouTube: @MacCooneyComposer Web: Cooney Studio Theme music, IBD Dance Party, is from ©Cooney Studio.Episode transcript and more information at: https://bit.ly/AIBD155
These show notes contain affiliate links. If you choose to purchase after clicking a link, Mal and Tal Enterprises, LLC may receive a commission at no extra cost to you.
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There tend to be more women than men who share their journey with inflammatory bowel disease (IBD, Crohn's disease, ulcerative colitis). The reasons are challenging to uncover, but what's clear is that more can be done to raise the visibility of men living with an IBD, ostomy, or other digestive condition. My guest is Jordan William Henry Aggen, also known as Crohn's Trooper. Jordan emphasizes the importance of open communication, pre-planning, and finding support from friends, family, and social media to cope with the disease.
Concepts discussed on this episode:
Which is Nerdier: Star Wars or Star Trek?Find Jordan William Henry Aggen at:
Facebook: @JWHA2011 Instagram: @crohnstrooperFind Amber J Tresca at:
AboutIBD.com: About IBD Verywell: Verywell Health Facebook: @aboutIBD Twitter: @aboutIBD Pinterest: @aboutibd Instagram: @about_IBD YouTube: @AboutIBDFind Mac Cooney (mix, sound design, and theme music) at:
Facebook: @maccooneycomposer Instagram: @maccooneycomposer YouTube: @MacCooneyComposer Web: Cooney Studio Theme music, IBD Dance Party, is from ©Cooney Studio.Episode transcript and more information at: https://bit.ly/AIBD154
These show notes contain affiliate links. If you choose to purchase after clicking a link, Mal and Tal Enterprises, LLC may receive a commission at no extra cost to you.
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Dr Iris Wang, assistant professor in the division of Gastroenterology and Hepatology and the Associate Program Director of the GI fellowship at Mayo Clinic in Rochester, Minnesota and Amber Tresca discuss the stigma surrounding gut health and poop. Dr Wang shares the experience of writing a children's book focused on preventing and managing constipation titled "Boo Can't Poo!" They also discuss the challenges of publishing a book on gut health and the potential benefits of talking about poop and toileting, emphasizing the importance of open communication and personalized treatment. Listen to learn about where you can get "Boo Can't Poo!" and how parents with IBD can manage their anxiety around the idea of their kids developing IBD.
Order "Boo Can't Poo!" ISBN 9798887701431: Mayo Clinic Press Amazon Barnes and Noble Bookshop.org Target WalmartFind Xiao Jing "Iris" Wang, MD at:
Twitter: @IrisWangMD LinkedIn: @xiao-jing-wang-b755339 Instagram: @iriswangmdFind Amber J Tresca at:
AboutIBD.com: About IBD Verywell: Verywell Health Facebook: @aboutIBD Twitter: @aboutIBD Pinterest: @aboutibd Instagram: @about_IBD YouTube: @AboutIBDFind Mac Cooney (mix, sound design, and theme music) at:
Facebook: @maccooneycomposer Instagram: @maccooneycomposer YouTube: @MacCooneyComposer Web: Cooney Studio Theme music, IBD Dance Party, is from ©Cooney Studio.Episode transcript and more information at: https://bit.ly/AIBD153
These show notes contain affiliate links. If you choose to purchase after clicking a link, Mal and Tal Enterprises, LLC may receive a commission at no extra cost to you.
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What is being done to help prevent inflammatory bowel disease (IBD) in the next generation? The Genetic, Environmental, Microbial (GEM) Project is a research study from Crohn's and Colitis Canada (CCC) focused on finding possible causes for Crohn’s disease by following healthy people who are at a higher risk for developing the disease. To talk about GEM, Amber interviews CCC volunteer Chantel Wicks. Chantel is the chapter president for the Durham Region in Ontario and the Chair of their Gutsy Walk, which is a fundraiser and event that takes place every year in the first weekend of June. Learn more about how the GEM Project is uncovering important information on the development of IBD and how to get involved in CCC and The Gutsy Walk.
Find Chantel Wicks on the Guts and Glory Podcast at:
Web: https://gutsnglory.ca/ Facebook: @GtsNGlry Twitter: @GtsNGlry Instagram: @gtsnglryFind Crohn's and Colitis Canada at:
Web: https://crohnsandcolitis.ca/ The Gutsy Walk: https://gutsywalk.ca/ Facebook: @getgutsycanada Twitter: @getgutsycanada Instagram: @getgutsycanadaFind Amber J Tresca at:
AboutIBD.com: About IBD Verywell: Verywell Health Facebook: @aboutIBD Twitter: @aboutIBD Pinterest: @aboutibd Instagram: @about_IBDFind Mac Cooney (mix, sound design, and theme music) at:
Facebook: @maccooneycomposer Instagram: @maccooneycomposer Web: Cooney Studio Theme music, IBD Dance Party, is from ©Cooney Studio.Episode transcript and more information at: https://bit.ly/AIBD152
These show notes contain affiliate links. If you choose to purchase after clicking a link, Mal and Tal Enterprises, LLC may receive a commission at no extra cost to you.
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Did you notice that suddenly one year you started paying more for your healthcare? Crohn's disease and ulcerative colitis are sometimes treated with medications that are expensive. Manufacturers create programs to help patients afford these drugs. In the beginning, these payments from assistance programs counted toward a yearly health insurance deductible. Then, suddenly: they stopped counting. Overnight, patients found themselves responsible for more costs, while insurance carriers received what amounts to double payments. A 2023 court ruling says that this practice should be reversed again, but it's not happening. Amber McCown tells her story of how a copay accumulator program took her by surprise and why she's partnering with the HIV+Hepatitis Policy Institute and working with legislators and agencies to advocate for change. Aimed Alliance. How a Loophole in the Patient Protection and Affordable Care Act Can Impact Access To Your Necessary Treatments: https://aimedalliance.org/wp-content/uploads/2022/07/Aimed-Alliance-Non-EHB-Fact-Sheet-FINAL-1.pdf Patient Protection and Affordable Care Act; HHS Notice of Benefit and Payment Parameters for 2021; Notice Requirement for Non-Federal Governmental Plans: https://www.federalregister.gov/documents/2020/05/14/2020-10045/patient-protection-and-affordable-care-act-hhs-notice-of-benefit-and-payment-parameters-for-2021 Copay Accumulator Programs: https://cga.ct.gov/2024/rpt/pdf/2024-R-0034.pdf?t=1713267305928 State Insurance Departments: https://content.naic.org/state-insurance-departments From the HIV+Hepatitis Policy Institute: In 2022, the HIV+Hepatitis Policy Institute, two diabetes groups, and individual chronic disease patients filed a lawsuit in the U.S. District Court for the District of Columbia challenging the federal rule that allowed "copay accumulators." Insurers use "copay accumulator" programs to avoid counting the value of copay coupons that patients get from drug manufacturers toward a patient's deductible and out-of-pocket costs -- effectively double charging the patients. In 2023, the court ruled in favor of the plaintiffs and struck down the federal rule that had allowed health insurers to avoid counting copay assistance from drug manufacturers toward a patient's out-of-pocket cost. But the government isn't enforcing the court's ruling, so patients are still subject to copay accumulator schemes. It's bad enough that the federal government is effectively ignoring a court ruling. Far worse is the fact that patients are still being unjustly subjected to copay accumulators that prevent them from being able to afford their prescription drugs as a result. Patients need the federal government to issue a new rule ASAP. Find Amber J Tresca at: AboutIBD.com: About IBD Verywell: Verywell Health Facebook: @aboutIBD Twitter: @aboutIBD Pinterest: @aboutibd Instagram: @about_IBD Find Mac Cooney (mix, sound design, and theme music) at: Facebook: @maccooneycomposer Instagram: @maccooneycomposer Web: Cooney Studio Theme music, IBD Dance Party, is from ©Cooney Studio. Episode transcript and more information at: https://bit.ly/AIBD151 These show notes contain affiliate links. If you choose to purchase after clicking a link, Mal and Tal Enterprises, LLC may receive a commission at no extra cost to you.
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People with IBD are more likely to live with anxiety, depression, or other mood disorders than people who don't live with one of these conditions. For that reason, caring for mental health is as important as caring for physical health. But it doesn't always work out that way, as patients may not know how important their mental health is to their physical health, or may not have access to a mental health professional. Abri Bernstein shares her personal journey with ulcerative colitis (UC) and how somatic psychotherapy helped her cope with living with the disease. Abri explains somatic psychotherapy as a holistic approach to healing that focuses on the body and nervous system regulation. She describes various modalities, such as somatic experiencing, sensorimotor psychotherapy, and acceptance and commitment therapy (ACT), emphasizing the importance of addressing trauma stored in the body for healing to occur.
Resources and information discussed in this episode:
What Is Somatic Therapy? Trauma and the Nervous System: A Polyvagal Perspective Polyvagal Institute The Trauma Foundation Bonaz B, Sinniger V, Pellissier S. Therapeutic Potential of Vagus Nerve Stimulation for Inflammatory Bowel Diseases. Front Neurosci. 2021;15:650971. Published 2021 Mar 22. doi:10.3389/fnins.2021.650971. Polyvagal Theory: A Science of SafetyFind Abri Bernstein at:
Web: Healing With Abri LinkedIn: Abri Berstein Email: [email protected]Find Amber J Tresca at:
AboutIBD.com: About IBD Verywell: Verywell Health Facebook: @aboutIBD Twitter: @aboutIBD Pinterest: @aboutibd Instagram: @about_IBDFind Mac Cooney (mix, sound design, and theme music) at:
Facebook: @maccooneycomposer Instagram: @maccooneycomposer Web: Cooney Studio Theme music, IBD Dance Party, is from ©Cooney Studio.Episode transcript and more information at: https://bit.ly/AIBD150
These show notes contain affiliate links. If you choose to purchase after clicking a link, Mal and Tal Enterprises, LLC may receive a commission at no extra cost to you.
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Diagnosed with attenuated familial adenomatous polyposis (AFAP), retired Navy veteran Dan "Dry Dock" Shockley shares his remarkable journey of service, diagnosis, and advocacy. Following his diagnosis, Shockley became a passionate advocate for early detection and reducing the stigma associated with living with an ostomy. He emphasizes the importance of proactive medical care and maintaining a positive attitude in the face of adversity. Through his advocacy work and personal journey, Shockley serves as an inspiration, demonstrating resilience, determination, and a commitment to making a difference for others. Find Dan "Dry Dock" Shockley at: Twitter: @Dryshockley Instagram: @DanDryDock LinkedIn: @Dan Dry Dock Shockley Find Amber J Tresca at: AboutIBD.com: About IBD Verywell: Verywell Health Facebook: @aboutIBD Twitter: @aboutIBD Pinterest: @aboutibd Instagram: @about_IBD Find Mac Cooney (mix, sound design, and theme music) at: Facebook: @maccooneycomposer Instagram: @maccooneycomposer Web: Cooney Studio Theme music, IBD Dance Party, is from ©Cooney Studio. Episode transcript and more information at: https://bit.ly/AIBD149 These show notes contain affiliate links. If you choose to purchase after clicking a link, Mal and Tal Enterprises, LLC may receive a commission at no extra cost to you.
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We can hold two truths: Crohn’s disease is funny. It is also not funny. I speak with Matt Nagin, who has many talents, but we focus on his work as a comedian and actor living with Crohn’s disease. Our discussion focuses on how people need laughter and comedy in their lives. Yet, living with an illness like inflammatory bowel disease (IBD), it can be challenging to find those comedic moments. Especially when most people don’t know what IBD is, and even among those who do, they kind of don’t want to hear about it sometimes. Get tips from Matt on how to form a sense of humor about illness, keep people from getting burned out on you, and think outside the box when it comes to symptoms. Find Matt Nagin at: Web: mattnagin.com Facebook: @naginplease Twitter: @naginplease Instagram: @naginplease TikTok: @naginplease LinkedIn: Matt Nagin Find Amber J Tresca at: AboutIBD.com: About IBD Verywell: Verywell Health Facebook: @aboutIBD Twitter: @aboutIBD Pinterest: @aboutibd Instagram: @about_IBD Find Mac Cooney (mix, sound design, and theme music) at: Facebook: @maccooneycomposer Instagram: @maccooneycomposer Web: Cooney Studio LinkedIn: @macooney Theme music, IBD Dance Party, is from ©Cooney Studio. These show notes may contain affiliate links. If you choose to purchase after clicking a link, Mal and Tal Enterprises, LLC may receive a commission at no extra cost to you.
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What did you read over the past year? If you made a reading goal: did you hit it? The books I read in 2023 included biographies, fantasy, fiction, and romance. Plus, I had several authors who live with Crohn’s disease or ulcerative colitis on the show this year, so I read their books as well. Hear more about some of the books I enjoyed in 2023, how you can hear more from authors with IBD, and ways that you can hit those reading goals this year.
IBD Author Episodes: The Plant-Based Crohn’s and Colitis Cookbook – About IBD Podcast Episode 127 Up and Adam: A Patient’s Experience on Winning with IBD — About IBD Podcast Episode 130 I Pooped My Pants With April Michelle Harris – About IBD Podcast Episode 133 Positivity Beats IBD With Josef Miller – About IBD Podcast Episode 143 Books mentioned in this episode: Why Not Me? - Mindy Kaling Yes Please - Amy Poehler Bossypants - Tina Fey Orange Is the New Black - Piper Kerman Spare - Prince Harry Born With Teeth - Kate Mulgrew Where the Deer and the Antelope Play - Nick Offerman Fan Fiction - Brent Spiner, Jeanne Darst Wrong Place Wrong Time - Gillian McAllister Tomorrow, and Tomorrow, and Tomorrow - Gabrielle Zevin The Dead Romantics - Ashley Poston Where the Crawdads Sing - Delia Owens The House in the Pines - Ana Reyes The Testaments - Margaret Atwood The Heart Goes Last - Margaret Atwood Maid - Stephanie Land Class - Stephanie Land Under the Whispering Door - TJ Klune In the Lives of Puppets - TJ Klune Long Way Down - Jason Reynolds Red at the Bone - Jackeline Woodson Hatchet - Gary Paulsen The Plant-Based Crohn’s and Colitis Cookbook - Helena Rose Murphy The Purple Rose - Josef Alexander Miller I Pooped My Pants - April Michelle Harris Up and Adam: A Patient's Experience on Winning with IBD - Adam Finkelstein Find Amber J Tresca at: AboutIBD.com: About IBD Verywell: Verywell Health Facebook: @aboutIBD Twitter: @aboutIBD Pinterest: @aboutibd Instagram: @about_IBD Find Mac Cooney (mix, sound design, and theme music) at: Facebook: @maccooneycomposer Instagram: @maccooneycomposer Web: Cooney Studio LinkedIn: @macooney Theme music, IBD Dance Party, is from ©Cooney Studio. These show notes may contain affiliate links. If you choose to purchase after clicking a link, Mal and Tal Enterprises, LLC may receive a commission at no extra cost to you. -
A diagnosis of inflammatory bowel disease (Crohn’s disease, ulcerative colitis, IBD) affects the entire family. When it’s a child that’s diagnosed, it changes so many things and brings a host of challenges. Families experience many unmet needs related to IBD. My guest is Lisa Fournier of IBD Connect. Lisa is the mother of two children who live with IBD. Her experiences in helping them manage IBD at different stages in life compelled her to be a support for others. She worked with her local hospital to start a support group and eventually founded IBD Connect. Learn about the programs IBD Connect offers and how the community can support their important mission. Concepts on this episode: Very Early Onset Inflammatory Bowel Disease (VEO-IBD) UMass Chan Medical School Center for Applied Nutrition Methicillin-resistant Staphylococcus aureus (MRSA) Find IBD Connect at: Instagram: @ibdconnectinc Facebook: @IBDConnectInc Web: IBD Connect, Inc. Find Amber J Tresca at: AboutIBD.com: About IBD Verywell: Verywell Health Facebook: @aboutIBD Twitter: @aboutIBD Pinterest: @aboutibd Instagram: @about_IBD Find Mac Cooney (mix, sound design, and theme music) at: Facebook: @maccooneycomposer Instagram: @maccooneycomposer Web: Cooney Studio Theme music, IBD Dance Party, is from ©Cooney Studio. Episode transcript and more information at: https://bit.ly/AIBD146 These show notes contain affiliate links. If you choose to purchase after clicking a link, Mal and Tal Enterprises, LLC may receive a commission at no extra cost to you.
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My guest is Stephanie Brenner of Chronic Illness Psychotherapy. Stephanie is a Licensed Clinical Social Worker who has experience in working with clients with chronic illnesses. She has also taken on a variety of roles in GI space, including previously serving on both the advisory team for the Pediatric Crohn’s Guidebook and the recruitment committee for the Rome Foundation’s GastroPsych organization.
Stephanie lives with Crohn’s disease and a permanent ileostomy and is also a cancer survivor. I asked her to help us better understand PTSD and PTS as they relate to having a chronic illness like IBD. She defines PTSD and why it can happen with IBD, what some of the signs and symptoms might look like, and what patients can do to address their mental health.
Episode transcript and more information at: https://bit.ly/AIBD145
Find Stephanie Brenner, LCSW, MSW at:
Web: https://chronicillnesspsychotherapy.com/
Facebook: https://www.facebook.com/chronicillnesspsych
Concepts discussed:
An Overview of Rectovaginal Fistula: https://www.verywellhealth.com/rectovaginal-fistula-overview-4587356
An Overview of Anal or Rectal Abscess: https://www.verywellhealth.com/perirectal-abscess-2328821
Proctectomy Surgery for Inflammatory Bowel Disease: https://www.verywellhealth.com/proctectomy-surgery-for-inflammatory-bowel-disease-4122490
Sacha McBain, PhD: https://www.linkedin.com/in/sachamcbain/
What Is Post-Traumatic Stress Disorder (PTSD)?: https://www.verywellhealth.com/what-is-ptsd-5084527
The Psychology of the Sickbed: https://www.amazon.com/Psychology-Sickbed-J-H-Berg/dp/B004NMY0RK
Taft TH, Quinton S, Jedel S, Simons M, Mutlu EA, Hanauer SB. Posttraumatic Stress in Patients With Inflammatory Bowel Disease: Prevalence and Relationships to Patient-Reported Outcomes. Inflamm Bowel Dis. 2022;28(5):710-719. doi:10.1093/ibd/izab152
What Is EMDR Therapy?: https://www.verywellhealth.com/emdr-therapy-5212839
Understanding Diaphragmatic Breathing: https://www.verywellhealth.com/diaphragmatic-breathing-how-to-benefits-and-exercises-5219974
All About Grounding: Techniques to Connect to Nature: https://www.verywellhealth.com/grounding-7494652
Self-Report PTSD Checklist for DSM-5 (PCL-5): https://www.ptsd.va.gov/professional/assessment/documents/PCL5_Standard_form.pdf (other checklists https://www.ptsd.va.gov/professional/assessment/adult-sr/ptsd-checklist.asp#obtain)
Rome Foundation: https://romegipsych.org/
Samantha Irby: https://www.samanthairby.com/
Tig Notoro: https://tignation.com/
Hannah Gatsby: https://hannahgadsby.com.au/
Cameron Esposito: https://www.instagram.com/cameronesposito/
Find Amber J Tresca at:
AboutIBD.com: About IBD
Verywell: Verywell Health
Facebook: @aboutIBD
Twitter: @aboutIBD
Pinterest: @aboutibd
Instagram: @about_IBD
Find Mac Cooney (mix, sound design, and theme music) at:
Facebook: @maccooneycomposer
Instagram: @maccooneycomposer
Web: Cooney Studio
LinkedIn: @macooney
Theme music, IBD Dance Party, is from ©Cooney Studio.
These show notes may contain affiliate links. If you choose to purchase after clicking a link, Mal and Tal Enterprises, LLC may receive a commission at no extra cost to you.
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As an assistant professor of medicine in the Division of Gastroenterology at the University of Miami Miller School of Medicine, and the Director of Translational Studies for the Crohn’s and Colitis Center, Dr. Damas sheds light on the misconception that IBD only affects certain ethnicities. Her extensive research explores the connection between of environment and genetics in the development of IBD, with a special focus on its impact on immigrants from Latin America. Dr. Damas shares insights into the challenges of studying the role of diet in IBD, revealing key findings from her research and explaining how her work is reshaping our understanding of these diseases.
Find Oriana Damas, MD at:
University of Miami: Oriana Mazorra Damas, M.D. Twitter: @oridamasDr Damas' Research:
The Current State of Care for Black and Hispanic Inflammatory Bowel Disease Patients Social barriers influence inflammatory bowel disease (IBD) outcomes and disproportionally affect Hispanics and non-Hispanic Blacks with IBD Low-Fat, High-Fiber Diet Reduces Markers of Inflammation and Dysbiosis and Improves Quality of Life in Patients With Ulcerative Colitis Ethnicity influences risk of inflammatory bowel disease (IBD)-associated colon cancer: a cross-sectional analysis of dysplasia prevalence and risk factors in Hispanics and non-Hispanic whites with IBDFind Amber J Tresca at:
AboutIBD.com: About IBD Verywell: Verywell Health Facebook: @aboutIBD Twitter: @aboutIBD Pinterest: @aboutibd Instagram: @about_IBDFind Mac Cooney (mix, sound design, and theme music) at:
Facebook: @maccooneycomposer Instagram: @maccooneycomposer Web: Cooney Studio Theme music, IBD Dance Party, is from ©Cooney Studio.Episode transcript and more information at: https://bit.ly/AIBD143
These show notes contain affiliate links. If you choose to purchase after clicking a link, Mal and Tal Enterprises, LLC may receive a commission at no extra cost to you.
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What is it like to be a teen living with Crohn’s disease? If you’re like Josef Miller, you channel the challenges of the diagnosis and management of IBD into action. Josef has written a book about his experiences, entitled "The Purple Rose," and created an initiative called "Positivity Beats IBD," which creates inspirational cards for people living with IBD and other conditions. Learn about Josef's journey with Crohn's, his multicultural background, and how and why he decided to write a book.
Find Josef Miller at:
Instagram — Positivity Beats IBD: @positivity_beats_ibd Instagram — Josef Miller: @josefjm13 Book: The Purple Rose Book: The Axolotl That Lost Himself Connecting to CureFind Amber J Tresca at:
AboutIBD.com: About IBD Verywell: Verywell Health Facebook: @aboutIBD Twitter: @aboutIBD Pinterest: @aboutibd Instagram: @about_IBDFind Mac Cooney (mix, sound design, and theme music) at:
Facebook: @maccooneycomposer Instagram: @maccooneycomposer Web: Cooney Studio Theme music, IBD Dance Party, is from ©Cooney Studio.Episode transcript and more information at: https://bit.ly/AIBD143
These show notes contain affiliate links. If you choose to purchase after clicking a link, Mal and Tal Enterprises, LLC may receive a commission at no extra cost to you.
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What options are you wiling to try to manage your ulcerative colitis or Crohn’s disease? How about putting someone else’s stool into your own colon? Fecal microbiota transplants (FMTs) — using stool from a donor to repopulate bacteria in the colon — are being studied for use in treating inflammatory bowel disease (IBD). Filmmaker Saffron Cassady decided to try do-it-yourself FMT to treat her ulcerative colitis, using stool from the healthiest person she could find: her husband. The journey is captured in her film, Designer $hit, which explores both the science and potential behind FMT. Learn about why she decided to take a chance on FMT, how it has impacted her life, and where you can see Designer $hit. Learn where you can attend a screening: https://designershit.eventive.org/schedule Episode transcript and more information at: https://bit.ly/AIBD142 Find Saffron Cassaday and Designer $hit at: Web: Designer $hit Twitter: @Designer_Shit_ TikTok: @designershitdocumentary YouTube: Designer $hit Facebook: @Designer Shit Instagram: @designershtdocumentary Find Amber J Tresca at: AboutIBD.com: About IBD Verywell: Verywell Health Facebook: @aboutIBD Twitter: @aboutIBD Pinterest: @aboutibd Instagram: @about_IBD Find Mac Cooney (mix, sound design, and theme music) at: Facebook: @maccooneycomposer Instagram: @maccooneycomposer Web: Cooney Studio LinkedIn: @macooney Theme music, IBD Dance Party, is from ©Cooney Studio. These show notes may contain affiliate links. If you choose to purchase after clicking a link, Mal and Tal Enterprises, LLC may receive a commission at no extra cost to you.
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