About IBD – Details, episodes & analysis

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_colitisjourney

Find 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_ibd

Find 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.

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: @christinaking16

Find Amber J Tresca at:

• AboutIBD.com: About IBD
• Verywell Health: Verywell Health
• Facebook: @aboutIBD
• Twitter: @aboutIBD
• Instagram: @about_IBD
• YouTube: @AboutIBD
• Threads: @about_IBD

Find 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.

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.

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.

How would you answer these questions about your inflammatory bowel disease (IBD)?

• What is the best part of having IBD?
• What is the hardest part of your day?
• What is your least favorite treatment?
• If you could choose one dance for your doctor, what would it be and why?
• What is one thing you wish people knew about your condition?

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.

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:

• What Is Dyspnea?
• An Overview of Anal or Rectal Abscess
• Anemia and Its Relationship With IBD
• How to Use Telehealth Services During the COVID-19 Outbreak and Beyond

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.

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:

• Coronavirus (COVID-19) testing: What you should know (UC Davis Health)
• Mount Sinai COVID-19 Plasma Donation
• National COVID-19 Convalescent Plasma Project
• IOIBD Update on COVID19 for Patients with Crohn’s Disease and Ulcerative Colitis
• The Coronavirus Patients Betrayed by Their Own Immune Systems (Cytokine Storm)
• Coronavirus and IBD Reporting Database
• IBD-AID Diet (Anti-Inflammatory Diet for IBD)
• The Specific Carbohydrate Diet for IBD

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.

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.

• People with IBD are not at a greater risk of being infected with the novel coronavirus
• Having IBD does not mean a person is immunosuppressed
• People who have had a colectomy and who live with an ostomy or a j-pouch are also not considered immunosuppressed
• Experts are advising that people with IBD should stay on their medications

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.

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.

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.