Ostomy Awareness Day is an important observation that helps eliminate the stigma surrounding ostomies and ostomates. Ostomy surgery is lifesaving and many people who have an ileostomy or colostomy surgery due to ulcerative colitis or Crohn’s disease experience improved quality of life.
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I remember the first article I wrote about the Patient Protection and Affordable Care Act (ACA). It was in 2010.
During my research, I saw that part of the legislation was that “pre-existing conditions” could no longer be used to deny insurance coverage, starting in 2014.
The implications were so personal and important to me that I cried.
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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.
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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.
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 sounds pretty amazing, which is why I signed up for the program. Arielle Radin, who answers my questions about Gali Health and the Footprints Program, and on a personal note, tells us about getting married during the pandemic.
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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.
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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 on top of that? It could truly break you down and 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.
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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.
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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.
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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.
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