About Ibd

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:

What is your favorite week of the year? For the kids, counselors, and volunteers at Camp Oasis, their favorite is camp week. Learn more about a summer camp that’s designed especially for kids who have IBD but is also the place where the campers actually feel the most freedom from their disease. Amber visited camp on visitor’s day and talked with campers, leaders in training, and counselors to find out what makes Camp Oasis so special to them.  Find out more about Camp Oasis: http://www.crohnscolitisfoundation.org/get-involved/camp-oasis/ Find Camp Oasis locations: http://www.crohnscolitisfoundation.org/get-involved/camp-oasis/find-a-camp/ Crohn’s & Colitis Foundation: http://www.crohnscolitisfoundation.org/ Find Amber J Tresca at: Verywell: https://www.verywell.com/ibd-crohns-colitis-4014703 Blog: http://aboutibd.com/ Facebook: https://www.facebook.com/ibdcrohns/ Twitter: https://twitter.com/aboutIBD Pinterest: https://www.pinterest.com/aboutibd/ Instagram: https://www.instagram.com/about_IB

What happens when a diagnosis of Crohn’s disease stands between you and your chosen career? This is exactly the barrier that veteran journalist and news anchor Natalie Hayden faced in the early days after her IBD diagnosis. Her decision was to gather her support system around her and get camera ready. Find out how she made it as a morning news anchor, found the love of her life, started her family, and founded Lights, Camera, Crohn’s.   Find Natalie Hayden at: Blog: https://lightscameracrohns.com/ Twitter: https://twitter.com/nataliesparacio Facebook: https://www.facebook.com/natalieasparacio/ Instagram: https://www.instagram.com/natalieannhayden   Concepts, ideas, and advocates discussed on this episode: Intestinal Blockage: https://www.verywellhealth.com/intestinal-complications-of-ibd-1943043 Anal or Rectal Abscess: https://www.verywellhealth.com/perirectal-abscess-2328821 Resection Surgery: https://www.verywellhealth.com/resection-surgery-for-crohns-disease-1943058 The Potential Effects of IBD o

How does IBD impact the family? Couples who are thinking about having children when one or both of them have IBD often have questions about how the disease will affect their family. Amber interviews her 8-year-old daughter and 10-year-old son about how IBD does — and doesn’t — affect their lives. Find Amber J Tresca at: Verywell: https://www.verywell.com/ibd-crohns-colitis-4014703 Blog: http://aboutibd.com/ Facebook: https://www.facebook.com/ibdcrohns/ Twitter: https://twitter.com/aboutIBD Pinterest: https://www.pinterest.com/aboutibd/ Instagram: https://www.instagram.com/about_IBD/ Find IBD Moms at: Facebook: https://www.facebook.com/IBDMoms/ Twitter: https://twitter.com/ibdmoms Instagram: https://www.instagram.com/ibdmoms/   "About IBD with Amber Tresca" © Cooney Studio http://cooneystudio.com/

With an invisible illness such as IBD, it can be challenging to protect your quality of life. Patient influencers often push themselves in the service of others and that may seem strange to those that follow along on social media. How can someone be so sick and yet be able to attend a medical conference? Sara Ringer of Inflamed and Untamed explains how what you see online can be misleading and how she manages two difficult digestive diseases, all while striving to live a fulfilling life that includes being a resource for other patients seeking information and support. Concepts and ideas shared on this episode: Intestinal Pseudo-Obstruction: https://www.verywellhealth.com/intestinal-pseudo-obstruction-1942429 What You Need to Know About J-Pouch Surgery: https://www.verywellhealth.com/what-you-need-to-know-about-j-pouch-surgery-1942967 Pouchitis After IPAA Surgery: https://www.verywellhealth.com/what-is-pouchitis-in-a-jpouch-1942974 Nasogastric (NG) Tubes and IBD: https://www.verywellhealth.com/nasogast

How can we help new ostomates better adjust to their stoma? Megan Johnson, who you might better know as The Front Butt YouTuber, had a unique journey on the way to becoming a permanent ileostomate due to Crohn’s disease. Her experiences with the abysmal patient education material in the hospital after ostomy surgery sparked her desire to make accessible content that helps people adjust after surgery and “be comfortable in their own skin.”  This episode was recorded on location at HealtheVoices in Chicago, under challenging conditions, which is why the audio is less than pristine, but the content is extraordinarily compelling. Stick with it, and you’ll be glad you did! Megan Johnson, The Front Butt YouTuber at:  YouTube: https://www.youtube.com/user/TheFrontButttuber Blog: https://thefrontbuttyoutuber.wordpress.com/ Facebook: https://www.facebook.com/thefrontbuttyoutuber/ Twitter: https://twitter.com/FrontButtYouTR/ Instagram: https://www.instagram.com/the_front_butt_youtuber/ Find Amber J Tresca at: Verywe

It’s estimated that half of people who have an inflammatory bowel disease (IBD) try complementary and alternative medicine to treat their disease. Eric Polsinelli of Vegan Ostomy describes how he tried dozens of complementary therapies for his Crohn’s disease but never found anything that worked. He did, however, come away with vital insight about how people living with IBD can assess alternative therapies and talk to their physicians about working them into a comprehensive treatment plan. Find Eric Polsinelli, of Vegan Ostomy, at: Blog: https://www.veganostomy.ca/ YouTube: https://www.youtube.com/c/veganostomy/ Facebook: https://www.facebook.com/Veganostomy/ Twitter: https://twitter.com/veganostomy Instagram: https://www.instagram.com/vegan_ostomy/ Ostomeme: https://www.ostomeme.com 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.

The healthcare space isn’t a level playing field. Minority populations face complex challenges when it comes to accessing and receiving care, which is why April is designated as National Minority Health Month. In regards to inflammatory bowel disease, it’s not well known that Crohn’s disease and ulcerative colitis also affect minorities. Shawntel Bethea of Chronically Strong and Brooke Abbott of The Crazy Creole Mommy Chronicles discuss how they’ve been affected by healthcare disparity and offer concrete ideas on what can be done to start addressing healthcare gaps in their communities. Learn more about National Minority Health Month here: https://minorityhealth.hhs.gov/NMHM18/ Find Shawntel Bethea, 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 Brooke Abbott, The Craz

Take a journey back to 1999, when cellphones were a rarity, dial-up internet access was still used, and Amber had her first surgery of the 2-step j-pouch process. Amber’s husband Mike, a writer and communicator, journaled his thoughts on the day of the surgery. This journal was recently uncovered and Amber reads it to Mike and gets his reactions and further recollections of that challenging day. You can find out more about Amber and Mike in Episode 8, where you’ll hear about being told surgery was needed and find out about their fairytale wedding: https://soundcloud.com/amber-j-tresca/michael-tresca Conditions and procedures mentioned in this episode: Before, During, and After J-Pouch Surgery https://www.verywell.com/before-during-and-after-j-pouch-surgery-4137938 Central Lines: Why Is a Central Line Necessary? https://www.verywell.com/central-lines-why-is-a-central-line-necessary-3156818 What Are Precancerous Cells? https://www.verywell.com/what-are-precancerous-cells-2248796 Pseudopolyps in Inflammatory Bow

Megan Johnson of The Front Butt YouTuber has presented 5 questions for people with IBD to answer and then tag someone else using #IBDAdvocacyTag. It’s a great way to get to know people in the community better and hear different perspectives. My answer to the form of IBD I have is not going to be what you expect and my socially awkward moment is pretty epic: I remember every detail about it, even though it happened almost two decades ago. And who did I tag? Well, I do that in my own way, too. If you decide to participate, use #IBDAdvocacyTag on social media and answer these questions: What form of IBD do you have? Why is IBD advocacy important? Describe a socially awkward moment with IBD. What is a common stigma you run into? What do you want other people to know about IBD? Related articles: Is Discharge From a Rectal Stump Normal? https://www.verywell.com/discharge-from-a-rectal-stump-1942932 An episode mentioned in this podcast: Episode 17 - When IBD Gets Married With Jaime Weinstein Find Amber J Tresca at:

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.   Web sites mentioned in this episode: Mother to Baby: https://mothertobaby.org/La Leche League: https://www.llli.org/Kelly Mom: https://kellymom.com/Breastmilk Donations: https://www.hmbana.org/ 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/

Getting married is a joyful time in one’s life. Until you have to bring your IBD and body image difficulties along when you shop for your wedding dress, that is. Learn how Crohn’s disease affected Jaime’s perceptions about body image throughout her life and how it all culminated in a trip to a bridal shop that left her angry and frustrated. Plus, we share our best tips for making the dress shopping, and eventual wedding day attire wearing, go more smoothly if IBD decides to make make an appearance. Ideas and products mentioned in this podcast: The Bridal Buddy, the slip that saves your dress in the bathroom: https://bridalbuddy.net/products/bridal-buddy Find Jaime Weinstein 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 at: Verywell: https://www.verywell.com/ibd-crohns-colitis-4014703 Blog: http://aboutibd.com/ Facebook: https://www.facebook.com/ibdcrohns/ Twitter: http

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. Find Christy Stone, Crohnie Bologna, at: Blog: http://www.crohniebolognaibd.com/ Facebook: https://www.facebook.com/CrohnieBolognaIbd/ Twitter: https://twitter.com/CrohnieBologna Instagram: https://www.instagram.com/crohnie_bologna_ibd/ Find Amber J Tresca at: Verywell: https://www.verywell.com/ibd-crohns-colitis-4014703 Blog: http://aboutibd.com/ Facebook: https://www.facebook.com/ibdcrohns/ Twitter: https://twitter.com/aboutIBD Pinterest: https://www.pinterest.com/aboutibd/ Instagram: https://www.instagram.com/about_IBD/ Find Mac Cooney at: Cooney Studio: http://cooneystudio.com/ Facebook: https://www.facebook.com/michaelandrewcooney/ Twitter: https://twitter.com/maccooney Bandcamp: https://michaelandrewcooney.bandcamp.c