About Ibd

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/

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. Concepts and ideas discussed: Fecal transplants: https://www.verywellhealth.com/fecal-bacteriotherapy-fb-1942426 Stem cells for IBD: https://www.everydayhealth.com/digestive-health/are-stem-cells-the-key-to-fighting-ibd.aspx Precision medicine for pediatric patients: https://www.crohnscolitisfoundation.org/news/Pediatric-RISK Preclinical Human IBD Mechanisms: https://www.crohnscolitisfoundation.org/research/challenges-ibd/preclinical-human-ibd-mechanisms 3-D printing f

Does having inflammatory bowel disease (IBD) make you feel like a princess? Crohn’s disease and ulcerative colitis are not only painful, serious conditions, but they also carry stigma which leads to patients feeling isolated. Sophia Vicari, the founder of The Princess Promise, is creating a community that challenges the perception society has about digestive disease. Diagnosed with ulcerative colitis while in college, it didn’t take long before Sophia decided she needed to work to help others in the IBD community become more comfortable talking about poop. Hear Sophia’s disease journey, what it was like for her to be Miss Camden County, NJ, while living with ulcerative colitis, and how she plans to help women with IBD find their inner princess.     Find Sophia Vicari and the Princess Promise at: Facebook: https://www.facebook.com/theprincesspromise/ Instagram: https://www.instagram.com/theprincesspromise/ Blog: https://theprincesspromise.wixsite.com/theprincesspromise YouTube: https://www.youtube.com/channel

Every person that lives with Crohn’s disease or ulcerative colitis in the United States knows the challenges of dealing with health insurance companies. Denials of service are common, particularly when diagnostic tests are ordered or when a new drug is prescribed. A change in insurance carrier, which can come after a life event (such as getting married or changing jobs) or at the start of the calendar year is another time when patients may find themselves in the appeal process in order to get needed tests or medication. For Jaime Holland, a life change, an insurance change, a calendar year change, and a change in gastroenterologist culminated in her being in danger of not receiving her biologic medication on time. Hear Jaime tell the story of how the problem started, why she had to look to someone outside her physicians office and her insurance carrier to get it solved, and her tips to help you avoid similar insurance snafus. This episode is perfect not only for anyone living with inflammatory bowel disease (

Living with Crohn’s disease or ulcerative colitis may have a significant affect on intimate relationships. The reasons for this are as individual as we are but can include pain, fatigue, medication side effects, and problems with body image. Kait Scalisi, an NYC-based sex educator who founded Passion by Kait, has devoted her professional life to helping women and couples learn to reconnect with themselves and their partner in order to enhance intimacy and reconnect with pleasure. Kait lives with Crohn’s disease and ankylosing spondylitis, and therefore has a deep understanding of how chronic conditions can affect intimate relationships (both with oneself and with a partner). Hear Kait’s Crohn’s disease journey and learn how she helps people find their way back to enjoying their spark, both in the bedroom and outside of it.   Find Kait Scalisi at: Web site: https://passionbykait.com/ Facebook: https://www.facebook.com/PassionbyKait/ Instagram: https://www.instagram.com/passionbykait/ Twitter: https://twitter.

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.   Concepts and ideas discussed on this episode: Crohn’s colitis: https://www.verywellhealth.com/what-is-crohns-colitis-1942589 Proctectomy: https://www.verywellhealth.com/proctectomy-surgery-for-inflammatory-bowel-disease-4122490 Ileostomy: https://www.verywellhealth.com/what-you-need-to-know-about-ileostomy-surgery-1942936 Stricture: https://www.verywellhealth.com/what-is-the-lumen-1942954 Avascular necrosis: https://www.veryw

People who live with Crohn’s disease and ulcerative colitis experience stigma because of their inflammatory bowel disease (IBD). The taboo topic of bowel disease can permeate all aspects of a person’s life, especially when there are cultural influences also at play.Tina Aswani Omprakash, who lives with Crohn's disease and a permanent ileostomy, shares her story of personal empowerment and how she is working to help other people with IBD live their lives with confidence. Tina describes how IBD has profoundly affected her family as well as why she decided to become an outspoken advocate for the IBD and ostomy communities and start her blog, Own Your Crohn’s. Concepts discussed on this episode: Pouchitis: https://www.verywellhealth.com/what-is-pouchitis-in-a-jpouch-1942974 Rectovaginal fistula: https://www.verywellhealth.com/rectovaginal-fistula-overview-4587356 Perianal disease: https://www.verywellhealth.com/what-is-the-perianal-area-1942412 J-pouch: https://www.verywellhealth.com/before-during-and-after-j

How does IBD affect your family? Do you know about the tools and resources that are available to help you on your disease journey? On this episode of About IBD, I talk with the Director of Patient Education and Support at the Crohn’s and Colitis Foundation, Catherine Soto, who outlines the many tools the Foundation provides for anyone with IBD, including those made just for parents, kids, and teens. I also spoke with Dr Rajeev Jain, who tells me about a new, one-of-a-kind resource for women with IBD who want to be mothers, called the IBD Parenthood Project. And finally I called upon Brooke Abbott, co-founder of IBD Moms, to talk about her role as a patient in developing the IBD Parenthood Project, and she entertains me with a small rant about social media. 1:50 - Cathrine Soto, Director, Patient Education & Support at Crohn's & Colitis Foundation, talks about resources available for kids, teens, and parents 24:21 - Dr Rajeev Jain of Texas Digestive Disease Consultants talks about the IBD Parenthood Pr

It’s common for people with IBD to look online for patients who have a similar disease journey to their own. For men, however, there are fewer places to find such a peer because there are not as many men in the IBD influencer space as there are women. That’s where Rasheed Clarke, author of Three Tablets Twice Daily, blogger, and ulcerative colitis and j-pouch patient steps in. Hear Rasheed contrast how his running career is different before and after j-pouch surgery, his thoughts on being one of the few male voices in the online IBD community, how we can encourage more men to share their journey, and the wild and wonderful thing he did with a toilet for World IBD Day in 2017. Concepts and ideas discussed in this episode: J-pouch surgery: https://www.verywellhealth.com/what-you-need-to-know-about-j-pouch-surgery-1942967 Colectomy surgery: https://www.verywellhealth.com/types-of-colectomy-surgery-1943059 Exercise and IBD: https://www.verywellhealth.com/exercising-with-ibd-4582068 World IBD Day: https://worldib

What compels a person to share their personal journey with IBD? For Rasheed Clarke, author of Three Tablets Twice Daily, his writing began as a way to keep track of everything for himself and his healthcare team. It quickly turned into a tool that he used to show those around him the stark realities of a life with IBD: bloody diarrhea and all. His coworkers and friends were shocked to learn how much he was coping with every day but not everyone close to him approved of his honesty. On this episode of About IBD, Rasheed digs into the positives, the negatives, and the responsibilities that come with being an influencer in the IBD space.   Find Rasheed Clarke at: Blog: https://rasheedclarke.com Twitter: https://twitter.com/rasheedclarke Instagram: https://www.instagram.com/rasheedclarke/   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.pinte

What is the microbiome, how might it be connected to IBD and other conditions, and how can it affect health when it's pushed out of balance? Dr Sarina Pasricha of the Christiana Care Health System gives me the scoop on how the microbiome is created when we are young and how it changes with our activities and diet, as well as why we should not try fecal transplants at home, and how a little bit of dirt is good for our kids.   Concepts and ideas discussed in this episode: Christiana Care Health System 2nd Annual GI Symposium: https://events.christianacare.org/event/gi-symposium-2018/ The American Gut Project: http://americangut.org/ Fecal Bacteriotherapy (FB): https://www.verywellhealth.com/fecal-bacteriotherapy-fb-1942426 DINE-CD research study: http://dinecd.web.unc.edu/   Find Sarina Pasricha, MD, MSCR at: Facebook: https://www.facebook.com/DocSarina/ Instagram: https://www.instagram.com/docsarina/   Find Amber J Tresca at: Verywell: https://www.verywell.com/ibd-crohns-colitis-4014703 Blo

A diagnosis of IBD can take away the thing that you feel defines you as a person. This is how it felt for Megan Starshak of The Great Bowel Movement, who describes how her ulcerative colitis diagnosis at age 18 stole her passion for running. The process of losing and then regaining her identity as a runner fueled her desire to help people live well with a diagnosis of IBD. Her foundation seeks to educate those outside the IBD community through the use of a simple conversation prompt: Ask Me About My IBD. Find The Great Bowel Movement at: Web site: https://thegreatbowelmovement.org/ Facebook: https://www.facebook.com/TheGreatBM/ Twitter: https://twitter.com/TheGreatBM Instagram: https://www.instagram.com/TheGreatBM/   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.

The internet runs on advertising, which means that editors and writers are often tasked with getting the most possible eyeballs on their story. That can mean that there’s pressure to write a controversial or sensational headline to get those clicks. In this episode, I invite experienced medical writer and university instructor, Shereen Lehman, to weigh in and tell you how to figure out if a story about IBD is good reporting — or if it’s crap.     Articles on critical thinking and research: Should IBD Patients Look To Mouse Studies For Hope?: http://aboutibd.com/2015/02/27/should-ibd-patients-look-to-mouse-studies-for-hope/ 5 Keys to Uncovering Poor IBD Information Online: http://aboutibd.com/2018/03/26/5-keys-to-uncovering-poor-ibd-information-online/ Why You Can’t Trust “Dr Google”: http://aboutibd.com/2016/08/08/why-you-cant-trust-dr-google/ Why Not Every Study on IBD Is a Breakthrough: https://www.verywellhealth.com/why-not-every-study-on-ibd-is-a-breakthrough-4099015   Find Introvert’s Retreat a

I wanted to let you know what’s happening in the About IBD world and how you can stay in touch and keep up with all the great progress that’s happening!   Find IBD Moms at: Facebook: https://www.facebook.com/IBDMoms/ Twitter: https://twitter.com/ibdmoms Instagram: https://www.instagram.com/ibdmoms/   Find National Ulcerative Colitis Alliance (NUCA) at: Take the survey! https://nuca.life/about-nuca/nuca-survey/ Blog: https://nuca.life/did-uc-blog/ Facebook: https://www.facebook.com/NUCALife/ Twitter: https://twitter.com/nuca_life Instagram: https://www.instagram.com/about_IBD/ LinkedIn: https://twitter.com/NUCALife   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/   "About IBD with Amber Tresca" © Cooney Studio http://cooneystudio.com/

Why is it important to tell our stories? Every person who has IBD is unique and so is their disease journey. You might not think your experience is relevant to others living with IBD or another chronic condition, but it is, in many ways. A story can provide validation and hope while helping put the reality of life with IBD in perspective. Brooke Abbott of The Crazy Creole Mommy Chronicles and IBD Moms and I continue our discussion of how we can support others with IBD through telling our stories and listening to yours.   Find Brooke Abbott, 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 IBD Moms at: Facebook: https://www.facebook.com/IBDMoms/ Twitter: https://twitter.com/ibdmoms Instagram: https://www.instagram.com/ibdmoms/ Find Amber J Tresca at: Verywell: https://www.verywell.com/ibd-crohns-colitis-4014703 Blog: http:/

What are your traditions around Thanksgiving? What we eat and how we celebrate Thanksgiving depends on where we live, our ethnicity, and our family traditions. What matters is coming together and remembering to be thankful. Brooke Abbott of The Crazy Creole Mommy Chronicles and IBD Moms tells me about some of her family’s Thanksgiving traditions and how she talks about being grateful with her son. We discuss some of the ways we try to support the IBD community and what we can do better, especially during the hectic and stressful holiday season. Plus, see the end of the show notes for some of Brooke's recipes!   Find Brooke Abbott, 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 IBD Moms at: Facebook: https://www.facebook.com/IBDMoms/ Twitter: https://twitter.com/ibdmoms Instagram: https://www.instagram.com/ibdmoms/   Find Am

Dating can be challenging for anyone at any stage in life, but having IBD and/or other chronic conditions adds another level of difficulty that can be disconcerting. Angela Cohen was diagnosed with Crohn’s disease after her intestine perforated. Her long-term relationship ended not long after and she was thrust into the dating world. What she discovered while going on more than a few "first dates” was illuminating not only about how IBD and other autoimmune conditions are perceived by potential partners but also about herself and what she wants to get out of dating, as well as her life goals.   Concepts mentioned in this episode: What Is Postural Orthostatic Tachycardia Syndrome?: https://www.verywellhealth.com/postural-orthostatic-tachycardia-syndrome-pots-1746386 Diagnosing And Treating Dysautonomia: https://www.verywellhealth.com/dysautonomia-diagnosis-and-treatment-1746402   Find Angela Cohen at: Twitter: https://twitter.com/angelee828 Instagram: https://www.instagram.com/ange_lee_me/   Find

Even when you’re knowledgeable about IBD, it can still sneak up on you and skew your perception of how much control the disease has over your life. Angelica Catalano, Director of Media Partnerships at The Mighty, describes how ulcerative colitis has affected her since her diagnosis at the age of 6, and how she was living with symptoms on a daily basis. Emergency surgery shook her world, prompting her to make a change in her treatment program to prevent future IBD-related complications. Through her work at The Mighty, Angelica pursues her passion of helping people with chronic illness improve their quality of life by bringing them together with the nonprofits that provide support and resources.    IBD topic areas on The Mighty: Crohn’s disease: https://themighty.com/topic/crohns-disease/ Ulcerative colitis: https://themighty.com/topic/ulcerative-colitis/   Find The Mighty at: Facebook: https://www.facebook.com/TheMightySite/ Twitter: https://twitter.com/TheMightySite Instagram: https://www.instagram.com/

What have you done when you couldn’t get anyone to take the symptoms of IBD seriously and you found yourself out of options? For Meredith, the road to a Crohn’s disease diagnosis was long and so frustrating that she wound up pleading for help from a specialist she’d never met. Going online to connect with other patients also took Meredith to places both light and dark, and she, Jaime, and I sort through our various experiences with social media as well as how we can work towards creating more hopeful content for new IBD patients in the future.   Concepts mentioned on this episode: What Are Mast Cells?: https://www.verywellhealth.com/what-are-mast-cells-1944889 What Is Gastroparesis?: https://www.verywellhealth.com/what-is-gastroparesis-1741788   Find Meredith Smolen at: Facebook: https://www.facebook.com/ShearTruth/ Instagram: https://www.instagram.com/mere282/ Twitter: https://twitter.com/been_foiled Find Jaime Weinstein at: Blog: http://prettyrottenguts.tumblr.com/ Twitter: https://twitter.com/J

Is it possible to take the diagnosis that turned your world upside down and turn it into a positive force in your life? My guest on About IBD is Lilly Stairs, Head of Patient Advocacy at Clara Health who lives with Crohn’s disease did exactly that. First diagnosed with psoriatic arthritis, it was only after Lilly’s symptoms weren’t improving and she was in and out of the hospital that healthcare providers finally discovered a Crohn’s disease flare-up in her small bowel. Lilly found the right mix of treatments to get her Crohn’s under control and now works with her team at Clara to connect patients to clinical trials.    Find Lilly Stairs at Blog: https://www.lillystairs.com/ Twitter: https://twitter.com/LillyStairs Instagram: https://www.instagram.com/lillyrosestairs/ LinkedIn: https://www.linkedin.com/in/lillystairs/ Facebook: https://www.facebook.com/lilly.stairs.56   Find Clara Health at: Twitter: https://twitter.com/Clara_Health Instagram: https://www.instagram.com/clarahealth/ LinkedIn: