About IBD

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.

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 (infliximab)
• Renflexis (Infliximab biosimilar
• Simponi (goliumumab
• Stelara (ustekinumab
• Tysabri (natalizumab
• Xeljanz (tofacitinib

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 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 Dance Party" ©Cooney Studio.

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 Dance Party" ©Cooney Studio.

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 Tresca at AboutIBD.com, Verywell, Facebook, Twitter, Pinterest, and Instagram.

Credits: Sound engineering courtesy Mac Cooney. "IBD Dance Party" ©Cooney Studio.

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 Night IBD.

Find Amber J Tresca at AboutIBD.com, Verywell, Facebook, Twitter, Pinterest, and Instagram.

Credits: Sound engineering courtesy Mac Cooney. "IBD Dance Party" ©Cooney Studio.

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.

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.

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:

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