About IBD

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:

• Family Medical Leave Act (FMLA): https://www.verywellfamily.com/understanding-family-medical-leave-act-4628330
• Affordable Care Act (ACA): https://www.verywellhealth.com/affordable-care-act-what-you-should-know-1738904
• Rectovaginal Fistula: https://www.verywellhealth.com/rectovaginal-fistula-overview-4587356
• J-Pouch Surgery: https://www.verywellhealth.com/what-you-need-to-know-about-j-pouch-surgery-1942967

Find Danielle O'Connor at:

• Instagram: https://www.instagram.com/d_mvoc
• Twitter: https://twitter.com/Youcantmakethi4

Find Amber J Tresca of About IBD at:

• Verywell: https://www.verywell.com/ibd-crohns-colitis-4014703
• Blog: https://aboutibd.com/
• Facebook: https://www.facebook.com/aboutIBD/
• Twitter: https://twitter.com/aboutIBD
• Pinterest: https://www.pinterest.com/aboutibd/
• Instagram: https://www.instagram.com/about_IBD/

Credits:

• Additional sound engineering courtesy Mac Cooney, https://www.facebook.com/michaelandrewcooney
• "About IBD with Amber Tresca" ©Cooney Studio http://cooneystudio.com/

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.

Find Jen Mcgregor of Crohnie Clothing at:

• Blog: https://crohnieclothing.com/
• YouTube: https://www.youtube.com/channel/UCHJBsqBLOFD0zDx9euyhLHQ
• Facebook: https://www.facebook.com/CrohnieClothing/
• Instagram: https://www.instagram.com/crohnieclothing/
• Twitter: https://twitter.com/crohnieclothing

Find Amber J Tresca of About IBD at:

• Verywell: https://www.verywell.com/ibd-crohns-colitis-4014703
• Blog: http://aboutibd.com/
• Facebook: https://www.facebook.com/aboutIBD/
• Twitter: https://twitter.com/aboutIBD
• Pinterest: https://www.pinterest.com/aboutibd/
• Instagram: https://www.instagram.com/about_IBD/

Credits:

• Additional sound engineering courtesy Mac Cooney, https://www.facebook.com/michaelandrewcooney
• "About IBD with Amber Tresca" ©Cooney Studio http://cooneystudio.com/

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:

• Sitz Bath
• Live Vaccines (Measles)
• Ally Bain and the Restroom Access Act
• Affordable Care Act on Rebecca's Blog
• Pop Sockets at the Foundation

Find Rebecca Kaplan at:

• Twitter: https://twitter.com/RebeccaHKaplan

Find the Crohn's and Colitis Foundation at:

• Website: http://www.crohnscolitisfoundation.org/
• Facebook: https://www.facebook.com/ccfafb/
• Twitter: https://twitter.com/CrohnsColitisFn
• Instagram: https://www.instagram.com/crohnscolitisfoundation/
• Need Help With Your IBD? Call Crohn's & Colitis Foundation's Help Line at 888-694-8872 or email [email protected]

Find Amber J Tresca of About IBD at:

• Verywell: https://www.verywell.com/ibd-crohns-colitis-4014703
• Blog: http://aboutibd.com/
• Facebook: https://www.facebook.com/aboutIBD/
• Twitter: https://twitter.com/aboutIBD
• Pinterest: https://www.pinterest.com/aboutibd/
• Instagram: https://www.instagram.com/about_IBD/

Credits:

• Additional sound engineering courtesy Mac Cooney, https://www.facebook.com/michaelandrewcooney
• "About IBD with Amber Tresca" ©Cooney Studio http://cooneystudio.com/

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.

• See video of the Congressional Briefing on IBD & Population Health: https://www.facebook.com/ccfafb/videos/452493261950841/

Find Brooke Abbott of The Crazy Creole Mommy Chronicles at:

• Blog: https://crazycreolemommy.com/
• Facebook: https://www.facebook.com/CrazyCreoleMama
• Twitter: https://twitter.com/CrzyCreoleMommy/
• Instagram: https://www.instagram.com/crazycreolemama/

Find Amber J Tresca of About IBD at:

• Verywell: https://www.verywell.com/ibd-crohns-colitis-4014703
• Blog: http://aboutibd.com/
• Facebook: https://www.facebook.com/aboutIBD/
• Twitter: https://twitter.com/aboutIBD
• Pinterest: https://www.pinterest.com/aboutibd/
• Instagram: https://www.instagram.com/about_IBD/

Credits:

• Additional sound engineering courtesy Mac Cooney, https://www.facebook.com/michaelandrewcooney
• "About IBD with Amber Tresca" ©Cooney Studio http://cooneystudio.com/

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:

• Tumblr: https://mygutfeelings.tumblr.com/
• Website: http://www.keriannflaccomio.com/
• Instagram: https://www.instagram.com/keriannecdotes
• Twitter: http://www.twitter.com/keriannecdotes
• LinkedIn: https://www.linkedin.com/in/keriannflaccomio/

Find Amber J Tresca of About IBD at:

• Verywell: https://www.verywell.com/ibd-crohns-colitis-4014703
• Blog: http://aboutibd.com/
• Facebook: https://www.facebook.com/aboutIBD/
• Twitter: https://twitter.com/aboutIBD
• Pinterest: https://www.pinterest.com/aboutibd/
• Instagram: https://www.instagram.com/about_IBD/

Credits:

• Additional sound engineering courtesy Mac Cooney, https://www.facebook.com/michaelandrewcooney
• "About IBD with Amber Tresca" ©Cooney Studio http://cooneystudio.com/

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:

• 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 of About IBD at:

• Verywell: https://www.verywell.com/ibd-crohns-colitis-4014703
• Blog: http://aboutibd.com/
• Facebook: https://www.facebook.com/aboutIBD/
• Twitter: https://twitter.com/aboutIBD
• Pinterest: https://www.pinterest.com/aboutibd/
• Instagram: https://www.instagram.com/about_IBD/

Credits: Additional sound engineering courtesy Mac Cooney, https://www.facebook.com/michaelandrewcooney "About IBD with Amber Tresca" ©Cooney Studio http://cooneystudio.com/

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:

• Crohn's and Colitis Foundation—Be an Advocate: https://www.crohnscolitisfoundation.org/get-involved/be-an-advocate
• International Foundation for Gastrointestinal Disorders—Advocate for Digestive Health: https://www.iffgd.org/advocate-for-digestive-health.html
• United Ostomy Associations of America—Advocates for a Positive Change: https://www.ostomy.org/advocacy/

Find Amber J Tresca of About IBD at:

• Verywell: https://www.verywell.com/ibd-crohns-colitis-4014703
• Blog: http://aboutibd.com/
• Facebook: https://www.facebook.com/aboutIBD/
• Twitter: https://twitter.com/aboutIBD
• Pinterest: https://www.pinterest.com/aboutibd/
• Instagram: https://www.instagram.com/about_IBD/

Credits: Additional sound engineering courtesy Mac Cooney, https://www.facebook.com/michaelandrewcooney "About IBD with Amber Tresca" ©Cooney Studio http://cooneystudio.com/

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:

• Twitter: https://twitter.com/DrsMeena
• Penn Medicine: https://www.pennmedicine.org/providers/profile/meenakshi-bewtra

Find Amber J Tresca of About IBD at:

• Verywell: https://www.verywell.com/ibd-crohns-colitis-4014703
• Blog: http://aboutibd.com/
• Facebook: https://www.facebook.com/aboutIBD/
• Twitter: https://twitter.com/aboutIBD
• Pinterest: https://www.pinterest.com/aboutibd/
• Instagram: https://www.instagram.com/about_IBD/

Credits: Additional sound engineering courtesy Mac Cooney, https://www.facebook.com/michaelandrewcooney "About IBD with Amber Tresca" ©Cooney Studio http://cooneystudio.com/

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:

• Blog: https://chronicallystrong.com/
• YouTube: https://www.youtube.com/channel/UCrklcLJ7FvGtN-fOvJJM-jQ
• Facebook: https://www.facebook.com/chronicallystrongblog/
• Twitter: https://twitter.com/shawnbethea_
• Instagram: https://www.instagram.com/chronicallystrongblog/

Find Amber J Tresca of About IBD at:

• Verywell: https://www.verywell.com/ibd-crohns-colitis-4014703
• Blog: http://aboutibd.com/
• Facebook: https://www.facebook.com/aboutIBD/
• Twitter: https://twitter.com/aboutIBD
• Pinterest: https://www.pinterest.com/aboutibd/
• Instagram: https://www.instagram.com/about_IBD/

Credits:

• Additional sound engineering courtesy Mac Cooney, https://www.facebook.com/michaelandrewcooney
• "About IBD with Amber Tresca" ©Cooney Studio http://cooneystudio.com/

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:

• Verywell: https://www.verywell.com/ibd-crohns-colitis-4014703
• Blog: http://aboutibd.com/
• Facebook: https://www.facebook.com/aboutIBD/
• Twitter: https://twitter.com/aboutIBD
• Pinterest: https://www.pinterest.com/aboutibd/
• Instagram: https://www.instagram.com/about_IBD/

Credit:

• "About IBD with Amber Tresca" ©Cooney Studio http://cooneystudio.com/