Tag Archives: ileostomy

About IBD Podcast Episode 72 - I Had Contemplated Keeping It a Secret

About IBD Podcast Episode 72 – I Had Contemplated Keeping It a Secret

What has been your experience with ostomy surgery? If you know someone who lives with an ileostomy or a colostomy, you’ll likely get your impression about having a stoma from them. But what if that person struggles to accept their stoma? When Amber Wallace Ogle of The Ostomy Diaries was faced with ileostomy surgery to treat her Crohn’s disease, she was reminded of the negative experiences of her family members who lived with an ostomy. However, it didn’t take long after her surgery before she was embracing life again and working to show others that life with an ostomy can be fulfilling and beautiful. Amber tells her Crohn’s disease story, gives 5 tips for advocating online, and shares a message she received from a family that has been touched by her advocacy.

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About IBD Episode 66 - I Just Needed Something to Change

About IBD Podcast Episode 66 – I Just Needed Something to Change

Ostomy surgery can improve quality of life for people with IBD but it is still not discussed often enough, or early enough, in the disease process. This leaves patients to cope with the surgery and the acceptance of an ostomy during a time when they are already critically ill. For Austin Powers, who goes by The Ostomy Guy, he exhausted all his possibilities to treat complications from Crohn’s disease before having surgery to place an ostomy. It was several more years before a quick encounter with another ostomate set him on the journey of acceptance. Today, Austin runs a podcast and has written a book about his experiences, 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.

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AMBER: I’m Amber Tresca and this is About IBD. It’s my mission to educate people living with Crohn’s disease or ulcerative colitis about their disease and to bring awareness to the patient journey. My guest on this episode is Dr Selvi Vasudevan (VAHsooDAYven). Dr Selvi was diagnosed with Crohn’s disease in college and endured several surgeries and complicated recovery periods but she didn’t let it stop her from going to medical school. She was in the middle of a pediatric residency when the disease changed the course of her life again. She looked for more meaning and purpose in her journey and she found it by first finding her own way to healing and then by sharing what she’s learned with others. I caught up with Dr Selvi at Crohn’s and Colitis Congress in Austin, which is a medical meeting for healthcare professionals. We sat down for a chat in the press room. during our lunch break so you’ll notice that

About IBD Podcast Episode 64 – My Life Would Never Be the Same

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.

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About IBD Episode 57 - I Really Don't Think About My Ostomy Anymore

About IBD Podcast Episode 57 – I Really Don’t Think About My Ostomy Anymore

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.

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About IBD Episode 56 - This Is Still Better Than Surgery

About IBD Podcast Episode 56 – This Is Still Better Than Surgery

A diagnosis of Crohn’s disease and an ileostomy hasn’t stopped Ryan Stevens from competing in triathlon races. He swam competitively 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.

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About IBD Episode 54: I Would Have Missed the Window for a Child

About IBD Podcast 54 – I Would Have Missed the Window for a Child

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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Have Your Voice Heard on the Hill

About IBD Podcast Episode 50 – Summer of Activism: Have Your Voice Heard on the Hill

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.


IBD Dance Party

It’s a celebration of 50 episodes of About IBD! 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


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IBD Activists You Should Follow on Social Media

Summer of Activism: IBD Advocates You Should Follow on Social Media

Improving the quality of life for people with inflammatory bowel disease (IBD) takes commitment and focus to understanding the issues affecting patients and caregivers. Real change means engaging with all stakeholders, including physicians, industry, and government, as well as patients and caregivers. A future that includes more effective treatments and compassionate care for those touched by IBD will only happen when those who have the best interests of patients at heart take their seat at the table. There are many activists in the IBD community that are doing this hard work and you can strengthen their achievements by amplifying their voices.

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Episode 45 - Where Do We Go From Here_

About IBD Podcast Episode 45 – Where Do We Go From Here?

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.

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Episode 41 - You Have to Do What’s Best for You

About IBD Podcast 41 – You Have to Do What’s Best for You

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.

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