About Ibd

It's one thing to talk to your physicians about becoming pregnant when you live with ulcerative colitis or Crohn's disease. But what about  getting the benefit of experiences from the mothers who have been through a pregnancy, birth, and breastfeeding journey? Former news anchor and current blogger and Crohn's patient Natalie Hayden gives her experiences with pregnancy and receiving biologics, as well as how she has participated in research during her pregnancies and the benefits it offers her family. Concepts discussed in this episode: What is Symphysis Pubis Dysfunction? An Overview of Sacroiliac Joint Pain IBD Parenthood Project Mother to Baby Studies - Crohn's Disease Mother to Baby Studies - Ulcerative Colitis Maternal-Fetal Medicine Specialist What Is Colostrum? Motherhood Unplugged on The PIANO Registry Complete show notes and transcript found at https://aboutibd.com/2021/05/16/about-ibd-podcast-episode-93---motherhood-unplugged-with-natalie-hayden/ Find Natalie Hayden, MD on Twitter, Facebook,

We used to be told that women with IBD couldn’t have children. We were also told people with IBD shouldn’t have children. The truth is this: women with IBD get pregnant and have healthy pregnancies and babies. We have more evidence and guidance than ever before. Gastroenterologist Dr Jill Gaidos, Associate Professor of Medicine in the section of Digestive Diseases and the Director of Clinical Research for the Yale Inflammatory Bowel Diseases Program discusses the finer points of pregnancy and IBD. When to seek help for fertility, what medications should be continued in pregnancy, and the risk of passing on IBD to children.  Concepts discussed in this episode: The PIANO Registry Conversations with Women in GI Updates on the Safety of Using Newer IBD Medications during Pregnancy Find Jill Gaidos, MD on Twitter and at Yale Health. Find Amber J Tresca at AboutIBD.com, Verywell, Facebook, Twitter, Pinterest, and Instagram. Credits: Mix and sound design is by Mac Cooney. Theme music, "IBD Dance Party,” is from ©

Hey, it's Amber. I want to tell you about my limited podcast series, Healthcare Disparities in IBD. IBD used to be thought of as a Western disease. Something that happened in developed countries like the United States, Canada, the UK, and Australia. IBD was also thought to mainly affect White people and people of Jewish heritage. However, these demographics are changing, and IBD is now considered a global disease.[1] A harmful and pervasive misconception is that IBD does not affect people of various ethnic and cultural backgrounds. Minority patients are sometimes told that they can't have an IBD because they are of African, Latinx, Native American, or Asian descent. This leads to a delay in diagnosis and care. In the setting of IBD, which is difficult to treat, this can lead to significant complications that negatively affect every aspect of a person's life. In this limited series, we explore the ways in which the healthcare system is underserving minority and LGBTQ patients who live with an IBD. We cover the

Have you ever seen a person who lives with inflammatory bowel disease (IBD) in a movie or TV show? If so: was the depiction positive or negative? My guest is actor, writer, and filmmaker Derek Mari. Derek lives with Crohn's disease and his IBD journey  inspired him to create a story that explores the way people cope with living with a chronic illness. He has already filmed a short film, entitled "Crohnie," which was positively received at several film festivals (before the pandemic shut everything down). Derek's next project is a full-length feature film with a main character who lives with Crohn's disease. Loosely autobiographical, it will examine the journey to acceptance of life with a chronic illness, and show how that life can be full and filled with success.  Learn more about Derek and his Crohn's story, as well as how you can get involved in the crowdfunding program to get this film made. Find Crohnie Movie on Vimeo,  Facebook, Twitter, and Instagram. Find Derek Mari on Vimeo, Twitter, and Instagram. F

Telling your Crohn's disease or ulcerative colitis story is powerful. It can be freeing but it can also come with some unexpected side effects. Welcome back Rosanne Mottola, who originally intended to talk over receiving her second dose of the Pfizer BioNtech COVID-19 vaccine. She told her ulcerative colitis story and about receiving her first dose on Episode 87, "COVID-19 Vaccination With UC Patient Rosanne Mottola." She gives her experience on her second dose, how it affected her, and what her family's plans are now that she's vaccinated. Additionally, Rosanne had another part of her journey that she wanted to share. She listened to her first About IBD episode (something a lot of guests don't actually do), as did her family. Reflecting on her ulcerative colitis journey brought things back in a fresh way. She tells me how revisiting some parts of her life in this way was both troubling and healing. It's an important part of the disease journey, especially for those who tell their story publicly, that doesn't

Living with one disease is bad enough, but living with two adds more than two times the complexity. As a young man, Aaron Blocker was diagnosed with Crohn’s disease after years of coping with strange and seemingly disconnected signs and symptoms. He continued to have problems which resulted in two hip replacements that were blamed on prednisone. However, after one of those hip replacements became dislocated, Aaron went looking for more answers and wound up suspecting that he also had an ultra-rare condition called hypophosphatasia. Concepts discussed on this episode: Osteonecrosis (Avascular Necrosis) Explained What Is Alkaline Phosphatase? Soft Bones, Inc National Organization for Rare Disorders (NORD) Ultra-rare disease diagnosis is an uphill battle Find Aaron Blocker on Facebook, Twitter, and Instagram. Find Amber J Tresca at AboutIBD.com, Verywell, Facebook, Twitter, Pinterest, and Instagram. Credits: Mix and sound design is by Mac Cooney. Theme music, "IBD Dance Party,” is from ©Cooney Studio.

During times of stress, our personal relationships may suffer. In the pandemic, we are finding ourselves spending a lot of time with those in our households, and for couples, that can start to take a toll. Certified sex educator Kait Scalisi, founder of Passion By Kait, shares her knowledge and experience as a neuroscientist, public health professional, and couples' counselor to help us understand how to better manage our relationships during the pandemic and beyond. Concepts discussed on this episode: Sexy Truth or Dare Pick A Stick How to Be a Good Partner During Quarantine How to Keep the Romance Alive Amid the Coronavirus Pandemic 3 Fun Sex Ideas for Couples—That You Can Try Tonight Mindful Sex Practices Sexy Conversation Starter Kit Find Kait Scalisi, founder of Passion By Kait, on Facebook, Twitter, and Instagram, YouTube, and Pinterest. Find Amber J Tresca at AboutIBD.com, Verywell, Facebook, Twitter, Pinterest, and Instagram. Credits: Theme music, "IBD Dance Party,” is from ©Cooney Studio.

People with IBD and other chronic conditions have questions about receiving the COVID-19 vaccination. Rosanne Mottola works at a hospital and was therefore eligible to receive a vaccination through her employer. Rosanne gives her experiences and takeaways as a "mild to moderate" ulcerative colitis patient and how she made the decision to receive the SARS-CoV-2 vaccine. She offers some great advice about how the internet may skew our perception of what IBD life is like, and because of her background, she's a wonderful resource for people living with IBD. Concepts discussed on this episode: An Overview of C. Diff Can Immunocompromised People Safely Receive the COVID-19 Vaccine? An Overview of Pfizer's COVID-19 Vaccine Find Rosanne Mottola on Facebook, Twitter, and Instagram. Find Amber J Tresca at AboutIBD.com, Verywell, Facebook, Twitter, Pinterest, and Instagram. Credits: Mix and sound design is by Mac Cooney. Theme music, "IBD Dance Party,” is from ©Cooney Studio.

Did an IBD diagnosis change the direction of your life? For Danielle Golden and Joe Teeters, being diagnosed as a young adult had a profound influence on their lives. The plans they had for their lives were derailed, but they only met, formed a strong friendship, and founded Double Baggin' It because of their IBD. Learn more about their disease journeys, how they met, and how they use humor to raise awareness of IBD and ostomy life both inside and outside the IBD community. Further Reading: Pre-Existing Condition—What It Is & Why It’s a Big Deal Dependent Coverage for Young Adults Proctectomy Surgery for Inflammatory Bowel Disease How to Prepare Yourself for Ileostomy Surgery Leading Charities and Organizations for Ostomy Surgery Find Double Baggin' It at Instagram, Twitter, and Facebook. Find Amber J Tresca at AboutIBD.com, Verywell, Facebook, Twitter, Pinterest, and Instagram. Credits: Mix and sound design is by Mac Cooney. Theme music, "IBD Dance Party,” is from ©Cooney Studio.

What does it mean to act with intention? The pandemic altered the course of our year and divorced us from our intentions. However, there were learnings that we can build on to create a better, more inclusive, and informed IBD community. In this mini-episode, I share my thoughts on how the year affected me and how I plan to move forward in 2021 by getting back to my intentions. Find Amber J Tresca at AboutIBD.com, Verywell, Facebook, Twitter, Pinterest, and Instagram. Credits: Mix and sound design is by Mac Cooney. Theme music, "IBD Dance Party,” is from ©Cooney Studio.

From the beginning of the COVID-19 pandemic, people with inflammatory bowel disease (IBD) have had many questions. Now that vaccines against the virus are becoming available, people living with Crohn's disease or ulcerative colitis need even more information in order to make decisions. I asked Dr David Rubin, Chief of the Section of Gastroenterology, Hepatology & Nutrition and the Co-Director of the Digestive Diseases Center at The University of Chicago Medicine to answer some of these initial questions about the first COVID-19 vaccines (manufactured by Pfizer and Moderna). Topics discussed on this episode include: How vaccines work How mRNA works How IBD medications affect the immune system IBD medications and their potential effect on COVID-19 vaccination When we'll have more information about COVID-19 vaccines and IBD Why side effects with vaccines are expected and what they mean Key Quotes: The first thing is to remember that inflammatory bowel disease itself is a condition where in almost all situ

For many of us who live with a form of IBD, being a performer seems like it would be impossible. Some of the problems include needing a job that provides health insurance, the stress of auditions, and being healthy enough to perform onstage. Justin Baker, however, has found a way to make it work for him as he lives with Crohn's disease and ankylosing spondylitis (a form of degenerative arthritis that's associated with IBD). Justin is an actor, a photographer, and a clown. He tells me how he manages stress, how empathy informs his work and his life, and how not having health insurance led to emergency surgery for his Crohn's disease. Concepts discussed in this episode: Ankylosing Spondylitis "Find the Pony" Camp Esperanza Find Justin Baker, actor, on Acts4Food, Facebook, Twitter, YouTube, and Instagram. Find Justin Baker, photographer, on Photo-Baker.com and Instagram. Find "You Don't Look Sick: A Documentary Series," on Facebook and Instagram. Find Amber J Tresca at AboutIBD.com, Verywell, Facebook, Twitte

Crohn's and Colitis Awareness Week is full of events that aim to raise funds and understanding of inflammatory bowel disease (IBD). One of these is Gaming4Guts, a gaming marathon to raise funds for the Crohn's & Colitis Foundation. Participants stream over Twitch during the 72-hour event but they have also formed a community, keeping in contact year-round on the Gaming4Guts Discord server. Kenzie, John, and Mark from Gaming4Guts sat down with me to talk about their personal connections to IBD, the evolution of Gaming4Guts, and what their goals are this year. Donate to Gaming4Guts on Tiltify. Concepts discussed in this episode: Indeterminate Colitis Pott Puffy Tumor Exclusive Enteral Nutrition (EEN) Find Amber J Tresca at AboutIBD.com, Verywell, Facebook, Twitter, Pinterest, and Instagram. Find Gaming4Guts on Twitch, Discord, Facebook, and Twitter. Credits: Mix and sound design is by Mac Cooney. Theme music, "IBD Dance Party,” is from ©Cooney Studio.

After hearing from my 10-year-old daughter, it’s now time to hear from my 13-year-old son. My kids are in hybrid school, and for my 8th grader, this means he goes to school in person  two full days a week, with 3 days of distance learning at home. We are managing it as well as I think we can expect. However, my son brings up a small wrinkle in regards to the "return to normal" to which we are all looking forward. It is going to be challenging for us to go back to our prior pace and there will be new struggles along the way. Be sure to listen to the end to hear my son’s tips for parents on how to talk to their kids. Find Amber J Tresca at AboutIBD.com, Verywell, Facebook, Twitter, Pinterest, and Instagram. Find IBDMoms on IBDMoms.org, Facebook, Twitter, and Instagram. Credits: Mix and sound design is by Mac Cooney. Theme music, "IBD Dance Party,” is from ©Cooney Studio.

How often do you check in with your friends and family about how they're doing during the pandemic? Families have had to make difficult choices regarding school, playdates, and extracurricular activities. We are all concerned about how our kids are faring during the pandemic. But are we asking them about their worries and concerns as often as we should? Amber sits down with her 10-year-old daughter to talk about hybrid school, concerns about getting sick with COVID, what kids are missing right now, and what they want to do when the pandemic is over. Concepts discussed in this episode: 7 Random Acts of Kindness for Kids The Benefits of Altruism for Stress Management How to Practice Gratitude This Thanksgiving Find Amber J Tresca at AboutIBD.com, Verywell, Facebook, Twitter, Pinterest, and Instagram. Find IBDMoms on IBDMoms.org, Facebook, Twitter, and Instagram. Credits: Mix and sound design is by Mac Cooney. Theme music, "IBD Dance Party,” is from ©Cooney Studio.

Do you worry that inflammatory bowel disease (IBD) will get in the way of finding a romantic partner? Crohn's disease or ulcerative colitis can make dating challenging but they can also simplify it. It becomes clear pretty quickly if a potential partner is going to struggle to cope with chronic illness. This episode focuses on communication, as Amber and her husband, Mike, discuss how he reacted to his first introduction to ulcerative colitis and why it's important to check in with your partner before discussing IBD outside of the relationship. After more than 20 years, they finally put an incident of miscommunication to bed, and Mike gives his tips on being a supportive partner. Concepts discussed in this episode: Advice for Partners of People With IBD How to Create Your IBD Elevator Speech The Differences Between an Ileostomy and a J-Pouch How to Prepare Yourself for Ileostomy Surgery Overview of J-Pouch Surgery What You Can Say to Your Friend With IBD Pregnancy and Inflammatory Bowel Disease Living

Inflammatory bowel disease (IBD) affects more than the digestive system. Crohn’s disease or ulcerative colitis can also affect the eyes, joints, and skin. Jordan Ditty was diagnosed with IBD as a child, though her diagnosis floated between Crohn’s and ulcerative colitis and she had j-pouch surgery due to a colonic perforation. Recently, she had her j-pouch removed and a permanent ileostomy placed. Surgery gave her with a better quality of life but also a new diagnosis of a skin condition related to IBD, called pyoderma gangrenosum. Learn how Jordan remains hopeful through her long journey with IBD and a host of complications. Concepts discussed in this episode: The Differences Between an Ileostomy and a J-Pouch Fistula Types, Diagnosis, Treatment, and Prognosis How to Prepare Yourself for Ileostomy Surgery Mouth Ulcers (Aphthous Stomatitis) Overview of J-Pouch Surgery Pouchitis After IPAA (J-Pouch) Surgery Proctectomy Surgery for Inflammatory Bowel Disease (“Barbie” butt or “Ken” butt surgery) Pyoderm

I'm taking some time off from producing new episodes of About IBD. But I don't want to leave you without great Crohn's disease and ulcerative colitis content for your ears. That’s why I’m sharing another podcast with you, called PSC Mami. PSC stands for primary sclerosing cholangitis, and it’s a liver condition that is related to IBD, and ulcerative colitis in particular. PSC Mami brings you stories at the intersection of PSC and parenthood. You can find PSC Mami in any podcast app as well as on Facebook, Instagram, and Twitter. The host of PSC Mami is Monika Aldarondo, who talks to parents about their perspective on life with IBD and PSC. Subscribe to PSC Mami in your favorite podcast app, including Apple Podcasts, Google Podcasts, Stitcher, and Soundcloud. Find PSC Mami on her web site, Facebook, Instagram, and Twitter.  Find Amber J Tresca at AboutIBD.com, Verywell, Facebook, Twitter, Pinterest, and Instagram. Credits: Mix and sound design for About IBD is by Mac Cooney. Theme music, "IBD Dance Party," is

I'm taking some time off from producing new episodes of About IBD. But I don't want to leave you without great Crohn's disease and ulcerative colitis content for your ears. That's why I'm sharing a new IBD podcast with you, called Crohn's Veteran. You can find Crohn's Veteran in any podcast app as well as on Facebook, YouTube, Instagram, and Twitter. The Crohn's Veteran hosts are Jordan McConnell, CJ Cabrera, and Renika Wood, who give their perspective on life with IBD and interview guests from the IBD community. Subscribe to Crohn's Veteran in your favorite podcast app, including Apple Podcasts, Google Podcasts, Spotify, and Anchor. Find Crohn's Veteran on their blog, Facebook, YouTube, Instagram, Twitter, Twitch, and their merch store. Find the Crohn's Veteran hosts on their personal Instagram accounts: Jordan McConnell, CJ Cabrera, and Renika Wood. Find Amber J Tresca at AboutIBD.com, Verywell, Facebook, Twitter, Pinterest, and Instagram. Credits: Mix and sound design for About IBD is by Mac Cooney. Them

Kids with chronic illness face special issues when going back to school because they’re at risk of their accommodations becoming eroded. In particular, children who live with Crohn’s disease or ulcerative colitis, might be in danger of not being granted appropriate bathroom access. I speak with Dr Brad Jerson, a Pediatric Psychologist in the Division of Digestive Diseases, Hepatology, and Nutrition at Connecticut Children’s and an Assistant Professor of Pediatrics at the University of Connecticut School of Medicine. We discuss the worrying behaviors that parents should watch out for in their kids and how we can help kids who feel scared to go back to school. Episode transcript: https://bit.ly/AIBD78 Concepts discussed in this episode: How to Practice Active Listening How Is Your Child Coping With COVID-19? Here’s What to Look For Managing Family Stress During COVID-19 Template Section 504 Plan for Children with Inflammatory Bowel Disease IBD Patient Advocacy Organizations Connecting to Cure Crohn's and