Have you ever been out in public and needed a toilet — but there wasn’t one available?
This has happened to everyone who lives with an inflammatory bowel disease (IBD, Crohn’s disease or ulcerative colitis), which is why so many of us have “bathroom accident” stories. Needing to use the bathroom is a basic human need, but it’s treated like an afterthought. That’s where the Restroom Access Act comes into play: a law passed in several states that allows people to request access to a toilet when they live with certain conditions.
There is no such law currently in California. That’s hopefully going to change thanks to the efforts of Ashlyn Saltzburg and Kelly Silk. Ashlyn is a teenager living with IBD and Kelly is her mom. Their effort to get a law passed in California is nothing short of heroic. Learn about how they got started on this journey to have the Restroom Access Act passed in California, and how you can help.
Send your letters of support for AB 1632 to Assemblymember Weber’s Legislative Assistant, Raymond G. Contreras: firstname.lastname@example.org
We all have goals in life. Inflammatory bowel disease (IBD) can sometimes get in the way. It’s not ideal, but that’s the reality.
However, the goal of treatment should be to get us back to doing what we love to do, and minimize the effects of Crohn’s disease or ulcerative colitis on our lives. Our doctors also have goals for us. These goals might be different, but they’re all important in getting symptoms and inflammation minimized and living life on our terms again.
Life with inflammatory bowel disease (IBD) brings challenges and many life changes but it can also sometimes bring unexpected opportunities.
Kathleen Nicholls, author of “Go Your Crohn Way: A Gutsy Guide to Living with Crohn’s Disease” and “My Flare Lady: a handbook for today’s (diseased) dame” was diagnosed with Crohn’s disease in her 20s. She started a blog as a way to process her disease journey. She was stunned when people started reading it and when publishers became interested. Two books later, she shares the lessons she learned along the way.
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.
New Podcast Brings Attention to the Disparities Experienced by People of Diverse Backgrounds Who Live With Inflammatory Bowel Disease
Patients, healthcare providers bring attention to the rising incidence of Crohn’s disease, ulcerative colitis, across racial and ethnic groups
CONNECTICUT, Apr 5, 2021 — Inflammatory bowel disease (IBD, which includes Crohn’s disease, ulcerative colitis, and indeterminate colitis) affects people of all ethnic backgrounds.1 However, people from minority groups experience a disparity of care that can result in worse outcomes, including complications, lowered quality of life, and increased mortality.2
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.
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
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.
Taking care of one’s teeth is important to anyone, but it is especially vital for people who live with an inflammatory bowel disease (IBD). We often say that Crohn’s disease, ulcerative colitis, and indeterminate colitis affect the whole person. The mouth is included in this, but we often short change ourselves where oral care is concerned. Mouth ulcers can be common in people with IBD. Cavities and infections of the gum and teeth may be more common in people with IBD. True Crohn’s disease of the mouth is less common, though it does occur. This all means that while most of us have lots of doctor’s appointments already, seeing a dentist is one that we need to keep on our list as well.
All of this is why, when my dentist office opened up, even while cases of COVID-19 were high in my area, I kept my appointment to get my teeth cleaned. A few weeks later, when the pediatric dentist opened up, I took my kids for their appointments. Here’s why I went and what to expect when visiting the dentist in the era of corona.