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.
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.
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.
As of this writing, for the past two months, I have not been to a pharmacy or a grocery store. I have used a delivery service. I, like many other people who live with inflammatory bowel disease (IBD), am immunocompromised because of the medication I receive. I am now reliant on other people to obtain the things we need for our household, but it’s unclear to me if this is the right decision.
I attended a briefing given by the American Gastroenterological Association (AGA) which was focused on COVID-19 and how the disease may affect people who live with inflammatory bowel disease (IBD). The briefing was given by three specialists: AGA Patient Education Advisor, Rajeev Jain, MD, AGAF, of Texas Digestive Disease Consultants; David T. Rubin, MD, AGAF, Joseph B. Kirsner Professor of Medicine, Chief, Section of Gastroenterology, Hepatology and Nutrition, University of Chicago Medicine, Illinois; and Russell D. Cohen, MD, AGAF, Professor of Medicine, Director, Inflammatory Bowel Disease Center, University of Chicago Medicine, Illinois. Drs Jain, Rubin, and Cohen are all integral in the IBD community and generously lend their time and expertise to helping both healthcare professionals and patients better understand IBD. What follows are highlights from this presentation that illustrate what has been learned so far about the intersection of IBD and COVID-19.
The impact of human activities on the environment is well-documented. Many people are concerned about how their daily lives can have a negative effect on the air we breathe, the water we drink, and the health of ourselves and of our children. My background is in environmental science: it began in high school when I worked to institute a recycling program in the lunchroom. I went on to earn my Bachelor of Science in Environmental Science from Michigan State University.
While there’s nothing we can do about having inflammatory bowel disease (IBD), there is something we can do about how it impacts our environment. Crohn’s disease and ulcerative colitis need treatment over a lifetime and this comes with a variety of choices. Environmental responsibility may be pretty far down on the list of things most people with IBD are concerned about, but there are some simple choices we can make that can have an impact.
The place were we have a lot of control as patients is in our own home and in how we manage our disease (alongside our healthcare teams). A few little changes can make a positive impact in how your IBD affects the word around you. I present some areas where we can think about making choices in regards to our IBD that may help us leave a smaller footprint.
In this moment of physical distancing in order to flatten the curve of people being exposed to the novel coronavirus (SARS-CoV-2) and developing the disease it causes, COVID-19, it may prove challenging to receive medication to treat inflammatory bowel disease (IBD). Certain medications that are given to manage Crohn’s disease and ulcerative colitis are given by infusion. This is most often done at a doctor’s office, infusion center, or at a hospital.
People with IBD have questions about the safety of receiving infusions outside the home at this time. In addition, there have been reports of infusions centers closing for the indefinite future, leaving patients to find another location to receive their medication. All the major gastrointestinal organizations and IBD specialists are recommending that patients still receive their medication at this time. It’s currently thought that the focus should be on avoiding an interruption in care and running the risk of an IBD flare-up. This article will provide resources in order to help patients navigate the closing of an infusion center.
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.
The last thing my family did before going into quarantine at home was to go to the grocery store, of all places, to sell Girl Scout Cookies and fundraise for the Boy Scouts. We meet all kinds of people while fundraising at the grocery store, and this time was no different in that respect. However, there were some noticeable contrasts, as most people were keenly aware that we were facing changes to our everyday lives in response to the pandemic.
People with inflammatory bowel disease (IBD, Crohn’s disease, ulcerative colitis, or indeterminate colitis) are understandably concerned about the novel coronavirus, and the disease it causes, COVID-19, spreading in their community. People who have certain medical conditions and/or are receiving immunosuppressive medications may be at a greater risk of complications for COVID-19. There are some guidelines put out specifically for people with IBD that can help in making decisions during this time. On this page you will find trusted and verifiable resources that help you as you make choices regarding travel, medications, and everyday life during the pandemic.