Tag Archives: jpouch

About IBD Podcast Episode 82 – If I Take Care of Myself, I’m Also Taking Care of You

After hearing from my 10-year-old daughter, it’s now time to hear from my 13-year-old son. My kids are in hybrid school, and for my 8th grader, this means he goes to school in person two full days a week, with 3 days of distance learning at home. We are managing it as well as I think we can expect. However, my son brings up a small wrinkle in regards to the “return to normal” to which we are all looking forward. It is going to be challenging for us to go back to our prior pace and there will be new struggles along the way. Be sure to listen to the end to hear my son’s tips for parents on how to talk to their kids.

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About IBD Episode 70 – I’m Not Doing This By Myself

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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 and Stuff, for fun and also to get the conversation started about how Crohn’s disease and ulcerative colitis affect our lives.

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About IBD Podcast Episode 58 – Don’t Stop the Things That You Love

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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 her secret to managing a work/life balance.

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About IBD Podcast Episode 52 – Summer of Activism: Connecting the Numbers to a Story

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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.

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

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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.

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

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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 18 – You Have To Be Happy Within Yourself – With Brooke Abbott

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Pregnancy and birth are different for women with IBD. There are not only challenges that come from the disease itself but the lack of awareness about IBD during pregnancy can lead to less than optimal treatment. Brooke Abbott of The Crazy Creole Mommy Chronicles describes how she coped with ulcerative colitis during her pregnancy and a birth that did not go as she’d hoped or as she’d expected. Learn how everything turned out in the end and find out what Brooke and Amber think pregnant women with IBD should do to prepare for birth and for those first few weeks with a new baby.

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Episode 16 – We Are Not Unique With Christy Stone of Crohnie Bologna

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Are you unique? Do you represent most patients with IBD? Christy Stone of Crohnie Bologna tells the story of her disease journey, how she feels that she’s not unique as an inflammatory bowel disease patient, why she chooses kindness, and why these things make her a better advocate.

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About IBD Podcast 15 – 2017 Year End Wrap-Up

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Welcome to the year-end wrap up show! I put together clips from my first 14 shows that drop the heaviest knowledge bombs about how life with IBD affects us, our careers, our relationships, and our stress levels.

Do you have an IBD Elevator Speech? I got you, here’s where you can learn to create yours after you listen to Brooke Abbott give hers: www.verywell.com/how-to-create-yo…r-speech-1942452

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