All of us who live with chronic illness know understand the difficulties of working in all the appointments and procedures. Even when doing OK, there’s a list to get through every year. Now with being over 40 years old, that list also continues to expand.
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 often get discussed.
I remember looking down at my abdomen shortly after having the first of two surgeries to complete the j-pouch procedure for treating ulcerative colitis. It was open surgery, so I had a line of staples closing the surgical site that was about 8 inches long. I spent most of those first weeks with a pillow clutched against my abdomen because it felt like my guts were going to fall out. I couldn’t imagine how I would ever complete a simple sit-up again.
Yet, I did recover. I can do the things that seemed beyond reach in those first days and weeks, but it didn’t happen right away or without effort. As the country becomes vaccinated against COVID-19 and we consider next steps, I am reminded of that feeling of having no idea how I would ever be whole again. Restarting a face-to-face life is off in the distance: hazy to the point of being unrecognizable. I’m struck by the similarities between resuming life after surgery and resuming life after a pandemic. They happen slowly, with the individual steps being so small they are almost imperceptible.
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 gives some great advice about how the internet may skew our perception of what IBD life is like, and because of her experiences and background, she’s a wonderful resource for people living with IBD.
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.
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.
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.
Most people may not immediately make a connection between inflammatory bowel disease (IBD) and sleep, but the two are intertwined. IBD affects the entire body and that includes the ability to achieve restful sleep. Living with Crohn’s disease or ulcerative colitis can significantly affect the quality and quantity of a person’s sleep, even when the disease is well-controlled.
Quality, restorative sleep is important to long-term health. However, most people don’t get enough. In fact, the Centers for Disease Control and Prevention (CDC) consider the low quality and lack of restorative sleep among adults in the United States to be a public health epidemic. This makes sense when you think about it, because fatigue affects every aspect of a person’s life. A lack of sleep is associated with many common chronic conditions, including diabetes, high blood pressure, and depression.
How does having Crohn’s disease or ulcerative colitis have an impact on your career? The symptoms of IBD, as well as the cost, can affect the ability to work in the same way as healthy people. Three women who live with IBD, Megan Starshak, Mary Elizabeth Ulliman, and Tina Aswani Omprakash, tell their stories about coping with college, first jobs, and career derailment as a result of their disease.
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