About Ibd

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

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 Hug

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. Information discussed in this episode includes erythrocyte sedimentation rate (sed rate), normal white blood cell (WBC) count, bowel perforation, wound closing by secondary intention, and ileostomy surgery. Find Dr Selvi on Facebook, Instagram, Twitter, and on her web site, DrSelvi.com. 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 who live with Crohn’s disease or ulcerative colitis have more to consider when it comes to the workplace. The cost of inflammatory bowel disease (IBD) means that a comprehensive insurance plan is a must, which may limit job choices. A flare-up or complication that results in absences can lead to poor performance reviews or difficulties with supervisors or co-workers. How can people with IBD cope? Three women who live with IBD, Megan Starshak, Mary Elizabeth Ulliman, and Tina Aswani Omprakash, tell their stories about missing work, being underinsured, and changing jobs while managing IBD. Information discussed in this episode includes Clostridium difficile (C diff), pouchitis, Crohn’s and Colitis Foundation Help Center, IBD and the Americans With Disabilities Act, The Family and Medical Leave Act, and Financial Help for People with IBD. Select pharmaceutical company assistance programs: Cimzia (certolizumab Entyvio (vedolizumab Humira (adalimumab Inflectra (infliximab biosimilar Remicade (inflix

How does having Crohn’s disease or ulcerative colitis have an impact on your career? The symptoms of IBD, as well as the cost, can affect the ability to work in the same way as healthy people. Three women who live with IBD, Megan Starshak, Mary Elizabeth Ulliman, and Tina Aswani Omprakash, tell their stories about coping with college, first jobs, and career derailment as a result of their disease. Information discussed in this episode includes Clostridium difficile (C diff) Infection, Short-Term Disability Insurance, Colectomy Surgery, J-pouch Surgery, and  IBD and the Americans With Disabilities Act. Find Megan Starshak on MeganStarshak.com, Twitter, and Instagram. Find Tina Aswani Omprakash on Own Your Crohn’s, Facebook, Twitter, and Instagram. Find Mary Elizabeth (Emmy) Ulliman on Instagram. Find The Great Bowel Movement 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

In December 2019 I went to Advances in IBD, which is a medical meeting that's focused entirely on Crohn's disease and ulcerative colitis. The understanding that IBD is more than a "bathroom disease" has finally hit home, and attendees (which include healthcare professionals such as nurses, dietitians, gastroenterologists, GI psychologists, and colorectal surgeons) were educated on a variety of topics. In this episode I provide some of the highlights of the meeting including sessions on diet, medication risks, and pregnancy. Articles and information discussed in this episode include a discussion of absolute risk, "Don't Forget that 5-ASAs Also Have Side Effects: Recognizing Complications", "Diet, the Microbiome, and IBD: 'Doctor, what should I eat for my IBD?'," "Inflammatory Bowel Disease in Pregnancy Clinical Care Pathway: A Report From the American Gastroenterological Association IBD Parenthood Project Working Group," and "Episode 48: Summer of Activism - Getting Kids Involved in Activism." Find Amber J Tr

This episode is sponsored by AbbVie. How do you think about your connection with your gastroenterologist? The patient/physician relationship is important in managing inflammatory bowel disease. I talk with Dr. Aline Charabaty, Associate Professor of Medicine, Director of the IBD Center at Johns Hopkins Sibley Memorial Hospital, and winner of the 2019 Healio Gastroenterology Social Media Influencer Award, about how patients and doctors can better understand one another and better communicate about managing your disease. Find out how doctors can help patients in addition to finding the appropriate treatment for them, including what kinds of questions both groups should be asking, and how we can all move beyond “how many bowel movements” to discuss other issues important in Crohn’s disease and ulcerative colitis. Want to get ahead of preparations for your next appointment? Try out the Doctor Discussion Guide at crohnsandcolitis.com/podcast Find Aline Charabaty, MD on Facebook, Twitter, Instagram, and at Monday

Crohn’s disease and ulcerative colitis are diseases of young people. Women are often diagnosed during their childbearing years, which means that inflammatory bowel disease (IBD) enters into the equation when considering becoming pregnant. I talk with Beth Kiernan, a Teratogen Information Specialist at MotherToBaby about how women can learn more about how to manage IBD medications before conception, during pregnancy, and while breastfeeding. Get in touch with the experts at Mother to Baby via email, phone (866-626-6847), or text (855-999-3525). Follow them on Facebook, Twitter, Pinterest, LinkedIn, YouTube, 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.

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 Sneha's secret to managing a work/life balance. Find the Health Advocacy Summit at Facebook, Twitter, Instagram, and LinkedIn.   Find the Crohn's and Colitis Young Adults Network at Facebook, Twitter, Instagram, LinkedIn, and YouTube.   Find Amber J Tresca at AboutIBD.com, Verywell, Facebook, Twitter, Pinterest, and Instagram.   Credits: Sound engineering courtesy Mac Cooney. "IBD Dance Party" ©Cooney Studio.  

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. Find Ryan Stevens of IBD Swimming & Me at Facebook, Twitter, and Instagram. Find Amber J Tresca of About IBD at Verywell Health, AboutIBD.com, Facebook, Twitter, Pinterest, and Instagram. Credits: Additional sound engineering courtesy Mac Cooney "About IBD with Amber Tresca" ©Cooney Studio 

A diagnosis of Crohn’s disease and an ileostomy hasn’t stopped Ryan Stevens from competing in triathlon races. He swam 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. Find Ryan Stevens of IBD Swimming & Me, at: Facebook: https://www.facebook.com/IBDSwimmer/ Twitter: https://twitter.com/tumbledgray Instagram: https://www.instagram.com/rp_stevens/ 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: Additi

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/Youcant

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/abou

  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 Fou

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 Bl

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-401470

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/abo

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.

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"

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: