Explore every episode of the podcast About IBD
| Title | Pub. Date | Duration | |
|---|---|---|---|
| Choosing Ostomy Surgery With Hannah Martin-Spencer | 01 Oct 2024 | 00:58:46 | |
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:
Find Hannah Martin-Spencer on:
Find Amber J Tresca at:
Find Mac Cooney (mix, sound design, and theme music) at:
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. | |||
| Starting College After a Crohn's Diagnosis | 17 Sep 2024 | 00:41:58 | |
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:
Find Amber J Tresca at:
Find Mac Cooney (mix, sound design, and theme music) at:
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. | |||
| Colorectal Cancer Awareness Month With Dan "Dry Dock" Shockley | 26 Mar 2024 | 00:32:51 | |
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:
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| I Evaluated What Was Really Important to Me | 18 May 2020 | 00:36:17 | |
How does being diagnosed with a chronic illness affect your path in life? For Mariah Leach, a rheumatoid arthritis diagnosis came out of the blue and put her at a crossroads. She decided to take the road towards patient advocacy. What started as a way to process her feelings and keep family and friends updated about her condition through her writing has evolved into a calling. Today, she has become a tireless advocate for people living with rheumatoid arthritis and as a resource for parents with chronic illness. It's Mariah's goal to ensure no one feels alone in their parenting journey. To that end, she has developed Mamas Facing Forward to support parents and foster the connections she was missing in her first years as a mom. Looking for ideas to keep kids occupied this summer? Learn about the Mamas Facing Forward Stay Home Summer Camp! Find Mariah Leach at From This Point. Forward., Facebook, Twitter, and Instagram. Find Mamas Facing Forward on Facebook, Twitter, and Instagram. Find Amber J Tresca at AboutIBD.com, Verywell, Facebook, Twitter, Pinterest, and Instagram. Credits: Sound engineering courtesy Mac Cooney. "IBD Dance Party" ©Cooney Studio. | |||
| I'm Not Doing This By Myself | 04 May 2020 | 00:23:31 | |
How would you answer these questions about your inflammatory bowel disease (IBD)?
Amber answers these questions, posed by Shawntel Bethea of Crohn's & Stuff, for fun and also to get the conversation started about how Crohn's disease and ulcerative colitis affect our lives. Find Shawntel Bethea of Crohn's & Stuff on YouTube, Facebook, Twitter, and Instagram. Answer the 5 questions, tag her on social media, and use #IBDTag. Find Amber J Tresca at AboutIBD.com, Verywell, Facebook, Twitter, Pinterest, and Instagram. Credits: Sound engineering courtesy Mac Cooney. "IBD Dance Party" ©Cooney Studio. | |||
| Tips for Telehealth Appointments During the Pandemic | 27 Apr 2020 | 00:27:27 | |
Telehealth has become part of our new normal as we practice physical distancing during the COVID-19 pandemic. Several of the barriers that prevented us from being able to see our doctors for an appointment via a telephone call or a video call have now been managed. However, it's still a new way to receive healthcare, and both patients and clinicians are adjusting. Learn from Neilanjan Nandi, MD, gastroenterologist and Associate Professor of Clinical Medicine at Penn Presbyterian Medical Center and the University of Pennsylvania about what patients can do to be ready for their telehealth appointments and what it's like from the doctor's side of the video conference call. Concepts discussed on this episode:
For more information on telehealth appointments, see Tips for Telehealth and Managing Your IBD Care During the COVID-19 Pandemic from Tina Aswani Omprakash of Own Your Crohn's. Find Neilanjan Nandi, MD on Facebook, Instagram, and Twitter. Find Amber J Tresca at AboutIBD.com, Verywell, Facebook, Twitter, Pinterest, and Instagram. Credits: Sound engineering courtesy Mac Cooney. "IBD Dance Party" ©Cooney Studio. | |||
| What It's Like to Have IBD and COVID-19 | 13 Apr 2020 | 00:31:25 | |
People living with IBD who have suppressed immune systems because of medication are understandably concerned about their risks surrounding the novel coronavirus and COVID-19. Jamie Horrigan, a medical student and founder of "Sweetened By Nature," lives with Crohn's disease and gastroparesis and was diagnosed with COVID-19. She describes her experiences with symptoms, diagnosis, isolation, and recovery. She also gives some insight on why a common complication of coronaviruses, called a cytokine storm, may be an important factor of COVID-19 for people with IBD. Concepts discussed on this episode:
Find Jamie Horrigan on Facebook, Instagram, Twitter, Pinterest, and on her web site Sweetened by Nature. Find Amber J Tresca at AboutIBD.com, Verywell, Facebook, Twitter, Pinterest, and Instagram. Credits: Sound engineering courtesy Mac Cooney. "About IBD With Amber Tresca" ©Cooney Studio. | |||
| Tips on Getting An Infusion During the Pandemic | 01 Apr 2020 | 00:20:35 | |
We're living through an usual time and people living with Crohn's disease or ulcerative colitis have many questions about how the pandemic may affect them. IBD experts agree that it's important to continue receiving medications during this time to avoid a flare-up. That might mean traveling to an infusion center, hospital, or doctor's office for treatment. Julie Kennedy of The Semicolon Girl recounts her experience in receiving her infusion of her Crohn's disease medication in the era of COVID-19, including how the procedure was different, and gives her tips on how to make the process go as smoothly as possible.
Find Julie Kennedy on Facebook, Instagram, Twitter, and on her web site, The Sick Adventures of a Semi Colon Girl. Read her blog post about her infusion, Adventures in Pandemics. Find Amber J Tresca at AboutIBD.com, Verywell, Facebook, Twitter, Pinterest, and Instagram. Credits: Sound engineering courtesy Mac Cooney. "IBD Dance Party" ©Cooney Studio. | |||
| I Just Needed Something to Change | 24 Mar 2020 | 00:29:27 | |
This is the second episode of my series talking to people who live with a permanent ostomy and exploring why they share their stories publicly and what it means to the ostomy community. I connected with Austin Powers on Twitter where he goes by Ostomy Guy. He has a podcast of the same name where he interviews people who live with an ostomy or who have other serious medical conditions. His path to becoming public about his ostomy started unexpectedly when he sat down to write about his disease journey. What started as a vague idea about writing a blog turned into a book, The Ostomy Guy Story: Memoirs of a Bagman, which is available on Amazon. Listen all the way to end to hear one of the many letters Austin receives from his readers, who are inspired by his story. Find the Ostomy Guy on Facebook, Instagram, Twitter, and on his site, theostomyguy.com. You can also buy his book, The Ostomy Guy Story: Memoirs of a Bagman, on Amazon. Find Amber J Tresca at AboutIBD.com, Verywell, Facebook, Twitter, Pinterest, and Instagram. Credits: Sound engineering courtesy Mac Cooney. "IBD Dance Party" ©Cooney Studio. | |||
| I'm Going to Make the Best of This | 17 Mar 2020 | 00:24:11 | |
Ostomy surgery is a life-saving procedure that can improve quality of life, but that doesn't mean it is always easy to accept. Stephanie Hughes founded The Stolen Colon after having surgery to place an ileostomy to treat her Crohn's disease. She's an ostomate, but she's also a writer, a woman, a wife, a mother, and a resource for people in the IBD and the ostomy community. She shares her journey through Crohn's disease and acceptance of her ostomy with me, including what her kids think of her stoma, how she manages issues around privacy, and what happened when a person who didn't know she had an ileostomy told her that ostomies were smelly. Listen all the way to the end to hear how Stephanie's advocacy in the ostomy community touched one family and gave them hope. Information for topics discussed in this episode includes protectomy surgery, colectomy surgery, ileostomy surgery, changing an ostomy appliance, Enterostomal Therapy (ET) nurses, ostomy tips, and what's normal with a stoma. Find Stephanie Hughes on Facebook, Instagram, YouTube, Twitter, and on her blog, The Stolen Colon. Find Amber J Tresca at AboutIBD.com, Verywell, Facebook, Twitter, Pinterest, and Instagram. Credits: Sound engineering courtesy Mac Cooney. "IBD Dance Party" ©Cooney Studio. | |||
| My Life Would Never Be the Same | 25 Feb 2020 | 00:30:33 | |
Finding meaning in an illness journey can be a catalyst for purpose and hope. Dr Selvi Vasudevan endured severe Crohn's disease that resulted in several surgeries and a relentless series of complications. She was on her chosen path when the disease stole her aspirations and left her without direction. A recommitment to herself and her own healing journey helped her find her purpose again as a healer and prompted her to found Cooking With Crohn's in order to share what she's learned with the IBD community. Information discussed in this episode includes erythrocyte sedimentation rate (sed rate), normal white blood cell (WBC) count, bowel perforation, wound closing by secondary intention, and ileostomy surgery. Find Dr Selvi on Facebook, Instagram, Twitter, and on her web site, DrSelvi.com. Find Amber J Tresca at AboutIBD.com, Verywell, Facebook, Twitter, Pinterest, and Instagram. Credits: Sound engineering courtesy Mac Cooney. "IBD Dance Party" ©Cooney Studio. | |||
| Health Insurance, Accommodations, and IBD at Work | 11 Feb 2020 | 00:28:21 | |
People who live with Crohn's disease or ulcerative colitis have more to consider when it comes to the workplace. The cost of inflammatory bowel disease (IBD) means that a comprehensive insurance plan is a must, which may limit job choices. A flare-up or complication that results in absences can lead to poor performance reviews or difficulties with supervisors or co-workers. How can people with IBD cope? Three women who live with IBD, Megan Starshak, Mary Elizabeth Ulliman, and Tina Aswani Omprakash, tell their stories about missing work, being underinsured, and changing jobs while managing IBD. Information discussed in this episode includes Clostridium difficile (C diff), pouchitis, Crohn's and Colitis Foundation Help Center, IBD and the Americans With Disabilities Act, The Family and Medical Leave Act, and Financial Help for People with IBD. Select pharmaceutical company assistance programs:
Find Megan Starshak on MeganStarshak.com, Twitter, and Instagram. Find Tina Aswani Omprakash on Own Your Crohn's, Facebook, Twitter, and Instagram. Find Mary Elizabeth Ulliman on Instagram. Find The Great Bowel Movement on Facebook, Twitter, and Instagram. Find Amber J Tresca at AboutIBD.com, Verywell, Facebook, Twitter, Pinterest, and Instagram. Credits: Sound engineering courtesy Mac Cooney. "IBD Dance Party" ©Cooney Studio. | |||
| Managing IBD Alongside a Career | 27 Jan 2020 | 00:22:01 | |
How does having Crohn's disease or ulcerative colitis have an impact on your career? The symptoms of IBD, as well as the cost, can affect the ability to work in the same way as healthy people. Three women who live with IBD, Megan Starshak, Mary Elizabeth Ulliman, and Tina Aswani Omprakash, tell their stories about coping with college, first jobs, and career derailment as a result of their disease. Information discussed in this episode includes Clostridium difficile (C diff) Infection, Short-Term Disability Insurance, Colectomy Surgery, J-pouch Surgery, and IBD and the Americans With Disabilities Act. Find Megan Starshak on MeganStarshak.com, Twitter, and Instagram. Find Tina Aswani Omprakash on Own Your Crohn's, Facebook, Twitter, and Instagram. Find Mary Elizabeth (Emmy) Ulliman on Instagram. Find The Great Bowel Movement on Facebook, Twitter, and Instagram. Find Amber J Tresca at AboutIBD.com, Verywell, Facebook, Twitter, Pinterest, and Instagram. Credits: Sound engineering courtesy Mac Cooney. "IBD Dance Party" ©Cooney Studio. | |||
| Making Crohn's Disease Funny With Matt Nagin | 13 Feb 2024 | 00:36:35 | |
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:
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| Reporting from Advances in IBD 2019 | 14 Jan 2020 | 00:15:23 | |
In December 2019 I went to Advances in IBD, which is a medical meeting that's focused entirely on Crohn's disease and ulcerative colitis. The understanding that IBD is more than a "bathroom disease" has finally hit home, and attendees (which include healthcare professionals such as nurses, dietitians, gastroenterologists, GI psychologists, and colorectal surgeons) were educated on a variety of topics. In this episode I provide some of the highlights of the meeting including sessions on diet, medication risks, and pregnancy. Articles and information discussed in this episode include a discussion of absolute risk, "Don't Forget that 5-ASAs Also Have Side Effects: Recognizing Complications", "Diet, the Microbiome, and IBD: 'Doctor, what should I eat for my IBD?'," "Inflammatory Bowel Disease in Pregnancy Clinical Care Pathway: A Report From the American Gastroenterological Association IBD Parenthood Project Working Group," and "Episode 48: Summer of Activism - Getting Kids Involved in Activism." Find Amber J Tresca at AboutIBD.com, Verywell, Facebook, Twitter, Pinterest, and Instagram. Credits: Sound engineering courtesy Mac Cooney. "IBD Dance Party" ©Cooney Studio. | |||
| Managing IBD Is a Team Sport With Dr Aline Charabaty | 02 Dec 2019 | 00:29:45 | |
This episode is sponsored by AbbVie. How do you think about your connection with your gastroenterologist? The patient/physician relationship is important in managing inflammatory bowel disease. I talk with Dr. Aline Charabaty, Associate Professor of Medicine, Director of the IBD Center at Johns Hopkins Sibley Memorial Hospital, and winner of the 2019 Healio Gastroenterology Social Media Influencer Award, about how patients and doctors can better understand one another and better communicate about managing your disease. Find out how doctors can help patients in addition to finding the appropriate treatment for them, including what kinds of questions both groups should be asking, and how we can all move beyond "how many bowel movements" to discuss other issues important in Crohn's disease and ulcerative colitis. Want to get ahead of preparations for your next appointment? Try out the Doctor Discussion Guide at crohnsandcolitis.com/podcast Find Aline Charabaty, MD on Facebook, Twitter, Instagram, and at Monday Night IBD. Find Amber J Tresca at AboutIBD.com, Verywell, Facebook, Twitter, Pinterest, and Instagram. Credits: Sound engineering courtesy Mac Cooney. "IBD Dance Party" ©Cooney Studio. | |||
| Providing the Best Start for Baby With MotherToBaby | 19 Nov 2019 | 00:27:03 | |
Crohn's disease and ulcerative colitis are diseases of young people. Women are often diagnosed during their childbearing years, which means that inflammatory bowel disease (IBD) enters into the equation when considering becoming pregnant. I talk with Beth Kiernan, a Teratogen Information Specialist at MotherToBaby about how women can learn more about how to manage IBD medications before conception, during pregnancy, and while breastfeeding. Get in touch with the experts at Mother to Baby via email, phone (866-626-6847), or text (855-999-3525). Follow them on Facebook, Twitter, Pinterest, LinkedIn, YouTube, and Instagram. Find Amber J Tresca at AboutIBD.com, Verywell, Facebook, Twitter, Pinterest, and Instagram. Credits: Sound engineering courtesy Mac Cooney. "IBD Dance Party" ©Cooney Studio. | |||
| Don't Stop the Things That You Love | 05 Nov 2019 | 00:31:55 | |
Being diagnosed with ulcerative colitis as a child and undergoing j-pouch surgery in high school hasn't slowed Sneha Dave down at all. In fact, it spurred her to found two groups that are focused on bringing young people into the patient advocacy space: the Crohn's and Colitis Young Adults Network (CCYA) and the Health Advocacy Summit (HAS). Learn how Sneha grew the CCYA from its humble start as a newsletter, the opportunities that CCYA and HAS offer to young patients, and Sneha's secret to managing a work/life balance. Find the Health Advocacy Summit at Facebook, Twitter, Instagram, and LinkedIn. Find the Crohn's and Colitis Young Adults Network at Facebook, Twitter, Instagram, LinkedIn, and YouTube. Find Amber J Tresca at AboutIBD.com, Verywell, Facebook, Twitter, Pinterest, and Instagram. Credits: Sound engineering courtesy Mac Cooney. "IBD Dance Party" ©Cooney Studio. | |||
| I Really Don't Think About My Ostomy Anymore | 29 Oct 2019 | 00:29:28 | |
Living with a permanent ileostomy as a result of Crohn's disease hasn't stopped Ryan Stevens from participating in the sport he loves. He worked his way back from crushing IBD flare-ups and multiple surgeries in order to train for the ultimate triathlon: the IRONMAN. In this second part of Ryan's story, hear what happened to him while on the bike route, why the ostomy may actually provide an advantage, and Amber's unfiltered thoughts on the competitiveness of the triathlon community. Find Ryan Stevens of IBD Swimming & Me at Facebook, Twitter, and Instagram. Find Amber J Tresca of About IBD at Verywell Health, AboutIBD.com, Facebook, Twitter, Pinterest, and Instagram. Credits:
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| This Is Still Better Than Surgery | 22 Oct 2019 | 00:28:55 | |
A diagnosis of Crohn's disease and an ileostomy hasn't stopped Ryan Stevens from competing in triathlon races. He swam through high school and college and was sidelined by Crohn's just after falling in love with triathlon. He's worked his way back twice from devastating flare-ups to get back to swim, bike, run, and now to the ultimate race: the IRONMAN. Come with us as we relive the IRONMAN Triathlon in Madison, Wisconsin and discuss how Ryan prepared and competed while living with IBD and a permanent ostomy. Find Ryan Stevens of IBD Swimming & Me, at:
Find Amber J Tresca of About IBD at:
Credits:
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| You Have to Take Care of Yourself | 08 Oct 2019 | 00:33:03 | |
Being diagnosed with inflammatory bowel disease (IBD) at any time or at any age is challenging. However, the pre-biologic era was especially difficult because of the lack of treatment options and the absence of some of the legal protections that are in place today. Danielle O'Connor tells her story of being diagnosed with ulcerative colitis at a young age and how she managed her career as a special education teacher through many hospitalizations and surgeries. Concepts discussed in this episode:
Find Danielle O'Connor at:
Find Amber J Tresca of About IBD at:
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| I Would Have Missed the Window for a Child | 24 Sep 2019 | 00:24:45 | |
People with IBD are often faced with unexpected challenges that are outside of those being experienced by their peer group. Jen Mcgregor of Crohnie Clothing found herself grappling with questions about her fertility while still in her early 20s. She had to act quickly in order to preserve her ability to have a biological child. Jen tells her personal story of working through the emotional, physical, financial, and even legal aspects of planning for her future fertility.
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| He Would Do the Same for Me | 10 Sep 2019 | 00:32:43 | |
Caregivers play an important role in the disease journey. For Rebecca Kaplan, whose husband, Dan, lives with Crohn's disease, caregiving has been a large part of her life at times. When she went looking for support for herself as a caregiver, what she found was a need for more resources. She went on to not only create a support space for caregivers but also to take a leadership role in the inflammatory bowel disease community that benefits everyone who is touched by these diseases. For more information:
Find Rebecca Kaplan at:
Find the Crohn's and Colitis Foundation at:
Find Amber J Tresca of About IBD at:
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| Summer of Activism: Connecting the Numbers to a Story | 27 Aug 2019 | 00:16:25 | |
In the final episode of my Summer of Activism Series, I asked Brooke Abbott of The Crazy Creole Mommy Chronicles to help us better understand Congressional Briefings. During Crohn's and Colitis Awareness Week, she spoke at a briefing about IBD and minority health. It was an opportunity to bring awareness to this little-discussed factor of IBD and it presented some challenges and opportunities. Learn more about Congressional Briefings, how they are an important tool for advocacy groups, and how they have an impact on public policy.
Find Brooke Abbott of The Crazy Creole Mommy Chronicles at:
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| Amber's Year in Books 2023 | 30 Jan 2024 | 00:25:54 | |
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:
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| Summer of Activism: It's Now or Never | 19 Aug 2019 | 00:28:39 | |
If you have the chance to speak on behalf of the inflammatory bowel diseases (IBD) community: would you take it? At first, volunteer and Crohn's disease advocate Keri Flaccomio wondered if she had a right to attend a day on the hill event with the Crohn's and Colitis Foundation and lobby in Washington DC on behalf of the IBD community. Her experiences while she was on the hill helped her to understand that not only did she have the right, but she also had a responsibility to tell her story — and the stories of others living with IBD. Learn how Keri made her hill meetings more effective and how they helped her to become empowered as an activist. Find Keri Ann Flaccomio at:
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| Summer of Activism: Have Your Voice Heard on the Hill | 13 Aug 2019 | 00:17:16 | |
The inflammatory bowel diseases (IBD) can make people feel powerless and isolated. Participating in day on the Hill events in Washington DC with patient advocacy groups are one way to take back control and have your voice heard by those who can help affect change. Hear from Jaime Holland of Pretty Rotten Guts, who describes her experiences in lobbying on Capital Hill including why it's important to her, how she navigates the day with mobility issues, and why the experience is empowering. Download your FREE copy of the new single, "IBD Dance Party," by signing up for the About IBD newsletter here: http://aibdnewsletter.aboutibd.com/music Find Jaime Holland of Pretty Rotten Guts at:
Find Amber J Tresca of About IBD at:
Credits: Additional sound engineering courtesy Mac Cooney, https://www.facebook.com/michaelandrewcooney | |||
| Summer of Activism: Attending Day on the Hill | 30 Jul 2019 | 00:16:38 | |
How does an IBD patient attend Day on the Hill events and meet with the offices of congressional representatives in Washington DC? What is it like to go to these events? In this episode I describe how I got involved in hill day meetings, why I do it, and what the process is like to attend. I also offer you my tips on how to make the best of the time spent in the capital in order to make the biggest impact on the people who can affect change in the lives of IBD patients. How to Get Involved:
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| Summer of Activism: Getting Kids Involved in Advocacy | 23 Jul 2019 | 00:25:07 | |
How young is "too young" to get kids involved in activism? Gastroenterologist and activist Dr Meenakshi Bewtra started her kids on their activism journey at birth and continues by bringing them to marches, voter registration events, and postcard writing parties. Dr Bewtra shares her tips on how you can involve your kids in activism, why you should, and how it might make your life as a parent — and activist — a bit easier. Find Meenakshi Bewtra, MD, MPH at:
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| Summer of Activism: Attending a Town Hall | 16 Jul 2019 | 00:13:31 | |
Working with our local elected officials is important to having our voices heard. But attending local town hall meetings held by state or federal congressional representatives is daunting, especially if you've never done it before. Shawntel Bethea of Chronically Strong describes her journey from sending an email to asking for support from her Congresswoman at a meeting in her district. She gives her tips on how you can make an impact in your community for people living with IBD. Find Shawntel Bethea of Chronically Strong, at:
Find Amber J Tresca of About IBD at:
Credits:
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| Summer of Activism: Going to Medical Meetings | 09 Jul 2019 | 00:09:47 | |
For this first episode of my limited series, Summer of Activism, I'm answering a question that I hear regularly: how it is that I go to medical meetings such as Digestive Disease Week, Advances in IBD, or Crohn's and Colitis Congress. I give you the answer as well as tips on how patients, bloggers, podcasters, and vloggers can work towards attending these, and other, scientific meetings. Here's a spoiler: it takes dedication to improving the lives of people with IBD, commitment to doing the work consistently, and some professional networking. Find Amber J Tresca at:
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| Where Do We Go From Here? | 24 Jun 2019 | 00:25:49 | |
What's new in inflammatory bowel disease (IBD) treatments and what's next on the horizon? Dr Peter Higgins, a gastroenterologist, IBD specialist, and researcher at the University of Michigan discusses what's new in IBD from the Crohn's and Colitis Congress meeting in 2019. We talk fecal transplants, healing strictures in the intestines, and the feasibility of custom ostomy products. It's a conversation about cutting edge research on Crohn's disease and ulcerative colitis mixed with the practicality of using these treatments in the real world. Concepts and ideas discussed:
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| Princesses Poop Too | 11 Jun 2019 | 00:38:37 | |
Does having inflammatory bowel disease (IBD) make you feel like a princess? Crohn's disease and ulcerative colitis are not only painful, serious conditions, but they also carry stigma which leads to patients feeling isolated. Sophia Vicari, the founder of The Princess Promise, is creating a community that challenges the perception society has about digestive disease. Diagnosed with ulcerative colitis while in college, it didn't take long before Sophia decided she needed to work to help others in the IBD community become more comfortable talking about poop. Hear Sophia's disease journey, what it was like for her to be Miss Camden County, NJ, while living with ulcerative colitis, and how she plans to help women with IBD find their inner princess. Find Sophia Vicari and the Princess Promise at:
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| We Still Don't Know What Happened | 21 May 2019 | 00:37:05 | |
Every person that lives with Crohn's disease or ulcerative colitis in the United States knows the challenges of dealing with health insurance companies. Denials of service are common, particularly when diagnostic tests are ordered or when a new drug is prescribed. A change in insurance carrier, which can come after a life event (such as getting married or changing jobs) or at the start of the calendar year is another time when patients may find themselves in the appeal process in order to get needed tests or medication. For Jaime Holland, a life change, an insurance change, a calendar year change, and a change in gastroenterologist culminated in her being in danger of not receiving her biologic medication on time. Hear Jaime tell the story of how the problem started, why she had to look to someone outside her physicians office and her insurance carrier to get it solved, and her tips to help you avoid similar insurance snafus. This episode is perfect not only for anyone living with inflammatory bowel disease (IBD) but also anyone who cares for those living with these diseases. Find Jaime Weinstein at: *Blog: http://prettyrottenguts.tumblr.com/ *Twitter: https://twitter.com/JaimeEditor *Instagram: https://www.instagram.com/slightlyjaided/ *YouTube: http://po.st/prKAKf Find Amber J Tresca at: *Verywell: https://www.verywell.com/ibd-crohns-colitis-4014703 *Blog: http://aboutibd.com/ *Facebook: https://www.facebook.com/ibdcrohns/ *Twitter: https://twitter.com/aboutIBD *Pinterest: https://www.pinterest.com/aboutibd/ *Instagram: https://www.instagram.com/about_IBD/ Additional sound engineering courtesy Mac Cooney, https://www.facebook.com/michaelandrewcooney/ "About IBD with Amber Tresca" © Cooney Studio http://cooneystudio.com/ | |||
| I Just Said Yes | 07 May 2019 | 00:35:55 | |
Living with Crohn's disease or ulcerative colitis may have a significant affect on intimate relationships. The reasons for this are as individual as we are but can include pain, fatigue, medication side effects, and problems with body image. Kait Scalisi, an NYC-based sex educator who founded Passion by Kait, has devoted her professional life to helping women and couples learn to reconnect with themselves and their partner in order to enhance intimacy and reconnect with pleasure. Kait lives with Crohn's disease and ankylosing spondylitis, and therefore has a deep understanding of how chronic conditions can affect intimate relationships (both with oneself and with a partner). Hear Kait's Crohn's disease journey and learn how she helps people find their way back to enjoying their spark, both in the bedroom and outside of it. Find Kait Scalisi at:
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| IBD Connect With Lisa Fournier | 16 Jan 2024 | 00:36:26 | |
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:
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| You Have to Do What's Best For You | 23 Apr 2019 | 00:45:23 | |
Many young people who are undergoing ileostomy surgery to treat Crohn's disease or ulcerative colitis have never met another younger person with an ostomy. Gaylyn Henderson, founder of Gutless and Glamorous, wants to make sure that people living with inflammatory bowel disease (IBD) don't experience the uncertainty and stigma that she encountered before her ostomy surgery. In between running a successful foundation and a support group for people with chronic illness, Gaylyn has also become a spokeswoman for people with an ostomy, proving that her ileostomy is not a barrier to success. Concepts and ideas discussed on this episode:
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| What Are People Going to Think? | 09 Apr 2019 | 00:33:21 | |
People who live with Crohn's disease and ulcerative colitis experience stigma because of their inflammatory bowel disease (IBD). The taboo topic of bowel disease can permeate all aspects of a person's life, especially when there are cultural influences also at play.Tina Aswani Omprakash, who lives with Crohn's disease and a permanent ileostomy, shares her story of personal empowerment and how she is working to help other people with IBD live their lives with confidence. Tina describes how IBD has profoundly affected her family as well as why she decided to become an outspoken advocate for the IBD and ostomy communities and start her blog, Own Your Crohn's. Concepts discussed on this episode:
Find Tina Aswani Omprakash at:
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Additional sound engineering courtesy Mac Cooney, https://www.facebook.com/michaelandrewcooney/ | |||
| Help for Parents With Crohn's Disease or Ulcerative Colitis | 26 Mar 2019 | 00:57:57 | |
How does IBD affect your family? Do you know about the tools and resources that are available to help you on your disease journey? On this episode of About IBD, I talk with the Director of Patient Education and Support at the Crohn's and Colitis Foundation, Catherine Soto, who outlines the many tools the Foundation provides for anyone with IBD, including those made just for parents, kids, and teens. I also spoke with Dr Rajeev Jain, who tells me about a new, one-of-a-kind resource for women with IBD who want to be mothers, called the IBD Parenthood Project. And finally I called upon Brooke Abbott, co-founder of IBD Moms, to talk about her role as a patient in developing the IBD Parenthood Project, and she entertains me with a small rant about social media. 1:50 - Cathrine Soto, Director, Patient Education & Support at Crohn's & Colitis Foundation, talks about resources available for kids, teens, and parents 24:21 - Dr Rajeev Jain of Texas Digestive Disease Consultants talks about the IBD Parenthood Project 35:35 - Brooke Abbott, the Crazy Creole Mommy and co-founder of IBD Moms, gives the patient perspective on the IBD Parenthood ProjectConcepts and ideas discussed in this episode:
Find Dr Rajeev Jain at:
Find IBD Moms at:
Find Brooke Abbott, The Crazy Creole Mommy Chronicles, at:
Find Amber J Tresca at:
Additional sound engineering courtesy Mac Cooney, https://www.facebook.com/michaelandrewcooney | |||
| Your Body Is Depending on You to Be Assertive | 12 Mar 2019 | 00:27:27 | |
It's common for people with IBD to look online for patients who have a similar disease journey to their own. For men, however, there are fewer places to find such a peer because there are not as many men in the IBD influencer space as there are women. That's where Rasheed Clarke, author of Three Tablets Twice Daily, blogger, and ulcerative colitis and j-pouch patient steps in. Hear Rasheed contrast how his running career is different before and after j-pouch surgery, his thoughts on being one of the few male voices in the online IBD community, how we can encourage more men to share their journey, and the wild and wonderful thing he did with a toilet for World IBD Day in 2017. Concepts and ideas discussed in this episode:
Find Rasheed Clarke at:
Find Amber J Tresca at:
Additional sound engineering courtesy Mac Cooney, https://www.facebook.com/michaelandrewcooney/ "About IBD with Amber Tresca" © Cooney Studio http://cooneystudio.com/ | |||
| I Felt a Lot of Guilt | 26 Feb 2019 | 00:23:31 | |
What compels a person to share their personal journey with IBD? For Rasheed Clarke, author of Three Tablets Twice Daily, his writing began as a way to keep track of everything for himself and his healthcare team. It quickly turned into a tool that he used to show those around him the stark realities of a life with IBD: bloody diarrhea and all. His coworkers and friends were shocked to learn how much he was coping with every day but not everyone close to him approved of his honesty. On this episode of About IBD, Rasheed digs into the positives, the negatives, and the responsibilities that come with being an influencer in the IBD space. Find Rasheed Clarke at:
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| We Are Only 1% Human With Dr Sarina Pasricha | 12 Feb 2019 | 00:34:40 | |
What is the microbiome, how might it be connected to IBD and other conditions, and how can it affect health when it's pushed out of balance? Dr Sarina Pasricha of the Christiana Care Health System gives me the scoop on how the microbiome is created when we are young and how it changes with our activities and diet, as well as why we should not try fecal transplants at home, and how a little bit of dirt is good for our kids. Concepts and ideas discussed in this episode:
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| It's a Pain I Invite Into My Life | 28 Jan 2019 | 00:24:25 | |
A diagnosis of IBD can take away the thing that you feel defines you as a person. This is how it felt for Megan Starshak of The Great Bowel Movement, who describes how her ulcerative colitis diagnosis at age 18 stole her passion for running. The process of losing and then regaining her identity as a runner fueled her desire to help people live well with a diagnosis of IBD. Her foundation seeks to educate those outside the IBD community through the use of a simple conversation prompt: Ask Me About My IBD. Find The Great Bowel Movement at:
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| How to Apply Critical Thinking to IBD Research | 15 Jan 2019 | 00:30:19 | |
The internet runs on advertising, which means that editors and writers are often tasked with getting the most possible eyeballs on their story. That can mean that there's pressure to write a controversial or sensational headline to get those clicks. In this episode, I invite experienced medical writer and university instructor, Shereen Lehman, to weigh in and tell you how to figure out if a story about IBD is good reporting — or if it's crap. Articles on critical thinking and research:
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| Wrapping Up About IBD for 2018 | 04 Dec 2018 | 00:05:10 | |
I wanted to let you know what's happening in the About IBD world and how you can stay in touch and keep up with all the great progress that's happening! Find IBD Moms at:
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| It's Important to Share Your Stories | 27 Nov 2018 | 00:28:01 | |
Why is it important to tell our stories? Every person who has IBD is unique and so is their disease journey. You might not think your experience is relevant to others living with IBD or another chronic condition, but it is, in many ways. A story can provide validation and hope while helping put the reality of life with IBD in perspective. Brooke Abbott of The Crazy Creole Mommy Chronicles and IBD Moms and I continue our discussion of how we can support others with IBD through telling our stories and listening to yours. Find Brooke Abbott, The Crazy Creole Mommy Chronicles at:
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| Post-Traumatic Stress Disorder and IBD With Stephanie Brenner, LCSW, MSW | 19 Dec 2023 | 00:46:17 | |
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: Concepts discussed:
Find Amber J Tresca at:
Find Mac Cooney (mix, sound design, and theme music) at:
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. | |||
| Community Doesn't Just Create Itself | 20 Nov 2018 | 00:30:38 | |
What are your traditions around Thanksgiving? What we eat and how we celebrate Thanksgiving depends on where we live, our ethnicity, and our family traditions. What matters is coming together and remembering to be thankful. Brooke Abbott of The Crazy Creole Mommy Chronicles and IBD Moms tells me about some of her family's Thanksgiving traditions and how she talks about being grateful with her son. We discuss some of the ways we try to support the IBD community and what we can do better, especially during the hectic and stressful holiday season. Plus, see the end of the show notes for some of Brooke's recipes! Find Brooke Abbott, The Crazy Creole Mommy Chronicles at:
In a large stew pot brown the ground meat. Once cooked through, add the onions, garlic, and bell pepper. Add ham and smoked sausage. *If adding a spicy sausage like Pete's Sausage or andouille, brown those in separate pan and then add to the mixture* Add canned peeled tomato and mash into large pieces. Mix in the tomato sauce. Add a teaspoon of Better than Bouillon Chicken. Season with Oregano, salt, and pepper. Mix all together and simmer. Pour over your choice of pasta. | |||
| How Much Information Do You Put Out There? | 13 Nov 2018 | 00:41:47 | |
Dating can be challenging for anyone at any stage in life, but having IBD and/or other chronic conditions adds another level of difficulty that can be disconcerting. Angela Cohen was diagnosed with Crohn's disease after her intestine perforated. Her long-term relationship ended not long after and she was thrust into the dating world. What she discovered while going on more than a few "first dates" was illuminating not only about how IBD and other autoimmune conditions are perceived by potential partners but also about herself and what she wants to get out of dating, as well as her life goals. Concepts mentioned in this episode:
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| I Just Kept Living With Bad Pain | 06 Nov 2018 | 00:41:35 | |
Even when you're knowledgeable about IBD, it can still sneak up on you and skew your perception of how much control the disease has over your life. Angelica Catalano, Director of Media Partnerships at The Mighty, describes how ulcerative colitis has affected her since her diagnosis at the age of 6, and how she was living with symptoms on a daily basis. Emergency surgery shook her world, prompting her to make a change in her treatment program to prevent future IBD-related complications. Through her work at The Mighty, Angelica pursues her passion of helping people with chronic illness improve their quality of life by bringing them together with the nonprofits that provide support and resources. IBD topic areas on The Mighty: Crohn's disease: https://themighty.com/topic/crohns-disease/ Ulcerative colitis: https://themighty.com/topic/ulcerative-colitis/ Find The Mighty at:
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