About Ibd

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

Back to school will be quite different for families across the United States and the world this year. There aren’t many answers to be had to our questions, yet we must make decisions with the best information that we have at this time. 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 about how we can prepare our kids, and ourselves, for the school year. We discuss the behaviors we can model for our children, how we can talk to young kids about mask wearing, and how to engage kids of all ages in conversation about their fears and anxieties during this time. Concepts discussed in this episode: A Checklist to Help Parents Decide: Send Kids Back to School or Keep Them Home During COVID-19? Is It Safe to Send Your Child Back to School During COVID-19? Advice From Connecticut Children’s Physician-in-Chief Ask a Pediatrician:

While everyone who lives with inflammatory bowel disease (Crohn's disease, ulcerative colitis, indeterminate colitis), or IBD, has their own story, there are major themes. Finding someone whose story is similar to yours is both validating and empowering. This is why Amber Tresca, who lives with ulcerative colitis and a j-pouch, developed the About IBD Podcast.   IBD is not only isolating but it also affects every aspect of the lives of those who live with these diseases. It touches relationships, finances, and careers. On About IBD, Amber talks to caregivers and people living with IBD to get their stories so that they can share what they’ve learned from their journey.   She also talks to healthcare providers and other experts to get their perspective on a wide variety of topics including research about IBD, improving relationships with physicians, becoming a critical thinker, and how to get involved with healthcare activism. Amber wants to give people touched by IBD the information they need to live a better

What’s in your microbiome and how does it interact with your IBD? The bacteria that’s in the gut of someone that lives with IBD is different from the bacteria in the the gut of someone that doesn’t have IBD. This is a major area of study because it may help researchers not only in developing new treatments but also in better understanding IBD. That’s why I asked Arielle Radin, Director of Clinical Research for Gali Health, to talk to me about the Footprints Program. The Footprints Program is an ambitious research project that is going to sequence poop and saliva from IBD patients. It’s being used in conjunction with the Gali Health app, which is made especially for IBD patients to track their symptoms and connect with other people who live with Crohn’s disease or ulcerative colitis. Participants in the Footprints Program will get access to some information about their microbiome. They can then look at the changes over time and see if there are any trends with the symptoms that are kept in the Gali app. It sou

The Sherman Prize is an award created by Bruce and Cynthia Sherman to recognize those who are making great contributions to the field of research and care in inflammatory bowel disease (IBD). The Sherman family has been touched by IBD and their goal is to create a ripple effect that spreads awareness, fosters innovation, and provides inspiration in the hope that in the future, other families won’t have to contend with IBD in the way that theirs has. Dr Dermot McGovern, Professor of Medicine at the David Geffen School of Medicine at the University of California in Los Angeles and the 2020 Committee Chair for The Sherman Prize talks more about the value of the Prize to the IBD community, who can make a nomination, and how to nominate a great candidate. He also talks about his research on the genetics of IBD and why it might help in leading to new treatments. Make your nominations for the 2020 Sherman Prize 2020 by July 17th! You can learn more and do so at ShermanPrize.org. Find The Sherman Prize at ShermanPr

Being diagnosed with inflammatory bowel disease (Crohn’s disease or ulcerative colitis) can upend your entire life. Then being diagnosed with a rare liver disease? It could truly leave you feeling hopeless. But that’s not what happened to Jenna Ziegler of The Comical Colon. Not long after her ulcerative colitis diagnosis, her doctor was concerned about her liver test levels. With more testing and a lot of patient empowerment, Jenna now has a presumed diagnosis of primary sclerosing cholangitis, or PSC. She tells how she has fought to get the tests she needed to understand her level of risk, and the treatment that can help prevent PSC from progressing and causing more damage to her liver. Concepts discussed in this episode: Clostridium difficile Infection Liver Function Tests IBD and Liver Disease IBD and PSC Biopsy Fibroscan Cirrhosis Enteropathic Arthritis Jenna’s Liver Biopsy Series Learn about Gali Health and download the app (affiliate link). Find Jenna Ziegler at TheComicalColon.com, Facebook, Twi

Do you have a sense of humor about your IBD? Jenna Ziegler of The Comical Colon found that keeping her sense of humor has helped her through the challenges she faced after being diagnosed with ulcerative colitis in college. After fighting her way back to health after severe flare-ups and carving out the life she wanted for herself, Jenna received another stunning diagnosis: a rare liver condition called primary sclerosing cholangitis, or PSC. Over the years she has done the hard work to learn how to be an empowered patient and she shares her 5 tips on how you can learn to advocate for yourself. Concepts discussed in this episode: Pancolitis Helicobacter pylori IBD and Liver Disease IBD and Primary Sclerosing Cholangitis (PSC) Learn about Gali Health and download the app (affiliate link). Find Jenna Ziegler at TheComicalColon.com, Facebook, Twitter, Instagram, and LinkedIn. Find Amber J Tresca at AboutIBD.com, Verywell, Facebook, Twitter, Pinterest, and Instagram. Credits: Sound engineering courtesy Mac C

What has been your experience with ostomy surgery? If you know someone who lives with an ileostomy or a colostomy, you'll likely get your impression about having a stoma from them. But what if that person struggles to accept their stoma? When Amber Wallace Ogle of The Ostomy Diaries was faced with ileostomy surgery to treat her Crohn's disease, she was reminded of the negative experiences of her family members who lived with an ostomy. However, it didn't take long after her surgery before she was embracing life again and working to show others that life with an ostomy can be fulfilling and beautiful. Amber tells her Crohn's disease story, gives 5 tips for advocating online, and shares a message she received from a family that has been touched by her advocacy. Concepts discussed in this episode: Clostridium difficile Colectomy Proctectomy Find Amber Wallace Ogle at OstomyDiaries,com, YouTube, Facebook, Twitter, and Instagram. Find Amber J Tresca at AboutIBD.com, Verywell, Facebook, Twitter, Pinterest, and

How does being diagnosed with a chronic illness affect your path in life? For Mariah Leach, a rheumatoid arthritis diagnosis came out of the blue and put her at a crossroads. She decided to take the road towards patient advocacy. What started as a way to process her feelings and keep family and friends updated about her condition through her writing has evolved into a calling. Today, she has become a tireless advocate for people living with rheumatoid arthritis and as a resource for parents with chronic illness. It’s Mariah’s goal to ensure no one feels alone in their parenting journey. To that end, she has developed Mamas Facing Forward to support parents and foster the connections she was missing in her first years as a mom. Looking for ideas to keep kids occupied this summer? Learn about the Mamas Facing Forward Stay Home Summer Camp! Find Mariah Leach at From This Point. Forward., Facebook, Twitter, and Instagram. Find Mamas Facing Forward on Facebook, Twitter, and Instagram. Find Amber J Tresca at About

How would you answer these questions about your inflammatory bowel disease (IBD)? What is the best part of having IBD? What is the hardest part of your day? What is your least favorite treatment? If you could choose one dance for your doctor, what would it be and why? What is one thing you wish people knew about your condition? Amber answers these questions, posed by Shawntel Bethea of Crohn's & Stuff, for fun and also to get the conversation started about how Crohn’s disease and ulcerative colitis affect our lives. Find Shawntel Bethea of Crohn’s & Stuff on YouTube, Facebook, Twitter, and Instagram. Answer the 5 questions, tag her on social media, and use #IBDTag. Find Amber J Tresca at AboutIBD.com, Verywell, Facebook, Twitter, Pinterest, and Instagram. Credits: Sound engineering courtesy Mac Cooney. "IBD Dance Party" ©Cooney Studio.

Telehealth has become part of our new normal as we practice physical distancing during the COVID-19 pandemic. Several of the barriers that prevented us from being able to see our doctors for an appointment via a telephone call or a video call have now been managed. However, it’s still a new way to receive healthcare, and both patients and clinicians are adjusting. Learn from Neilanjan Nandi, MD, gastroenterologist and Associate Professor of Clinical Medicine at Penn Presbyterian Medical Center and the University of Pennsylvania about what patients can do to be ready for their telehealth appointments and what it’s like from the doctor’s side of the video conference call. Concepts discussed on this episode: What Is Dyspnea? An Overview of Anal or Rectal Abscess Anemia and Its Relationship With IBD How to Use Telehealth Services During the COVID-19 Outbreak and Beyond For more information on telehealth appointments, see Tips for Telehealth and Managing Your IBD Care During the COVID-19 Pandemic from Tina Asw

People living with IBD who have suppressed immune systems because of medication are understandably concerned about their risks surrounding the novel coronavirus and COVID-19. Jamie Horrigan, a medical student and founder of "Sweetened By Nature," lives with Crohn’s disease and gastroparesis and was diagnosed with COVID-19. She describes her experiences with symptoms, diagnosis, isolation, and recovery. She also gives some insight on why a common complication of coronaviruses, called a cytokine storm, may be an important factor of COVID-19 for people with IBD. Concepts discussed on this episode: Coronavirus (COVID-19) testing: What you should know (UC Davis Health) Mount Sinai COVID-19 Plasma Donation National COVID-19 Convalescent Plasma Project IOIBD Update on COVID19 for Patients with Crohn’s Disease and Ulcerative Colitis The Coronavirus Patients Betrayed by Their Own Immune Systems (Cytokine Storm) Coronavirus and IBD Reporting Database IBD-AID Diet (Anti-Inflammatory Diet for IBD) The Specific Carboh

We’re living through an usual time and people living with Crohn’s disease or ulcerative colitis have many questions about how the pandemic may affect them. IBD experts agree that it’s important to continue receiving medications during this time to avoid a flare-up. That might mean traveling to an infusion center, hospital, or doctor’s office for treatment. Julie Kennedy of The Semicolon Girl recounts her experience in receiving her infusion of her Crohn’s disease medication in the era of COVID-19, including how the procedure was different, and gives her tips on how to make the process go as smoothly as possible. People with IBD are not at a greater risk of being infected with the novel coronavirus Having IBD does not mean a person is immunosuppressed People who have had a colectomy and who live with an ostomy or a j-pouch are also not considered immunosuppressed Experts are advising that people with IBD should stay on their medications Find Julie Kennedy on Facebook, Instagram, Twitter, and on her web s