I Just Needed Something to Change
About IBD
03/24/20
•29m
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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.
Previous Episode
I'm Going to Make the Best of This
March 17, 2020
•24m
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.
Next Episode
Tips on Getting An Infusion During the Pandemic
April 1, 2020
•20m
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.
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