Category Archives: ulcerative colitis

About IBD Podcast Episode 108 Cover

About IBD Episode 108 – Colitis Conversations: The Impact of Ulcerative Colitis

Inflammatory bowel disease (IBD) affects our quality of life. What that means, however, is going to be different for each person. It may depend on many factors including disease severity, access to care, and support structure.

The symptoms of ulcerative colitis such as diarrhea can prevent people from taking part in activities that aren’t near a bathroom. Bleeding can cause anemia, leaving people feeling tired and unable to go about regular activities. Not to mention the effects on mental health, relationships, and finances.

Danielle Gulden, ulcerative patient, ileostomate, and co-founder of Double Baggin’ It and Dr Nana Bernasko, IBD Nurse Practitioner and Assistant Professor of Medicine in the Division of Gastroenterology and Hepatology at Penn State Health, discuss how to manage the effects of IBD on everyday life.

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About IBD - Do You Have a Roadmap for Your Ulcerative Colitis

Do You Have a Roadmap for Your Ulcerative Colitis?

One of the biggest hurdles in getting a diagnosis of inflammatory bowel disease (IBD) is first in understanding that the symptoms aren’t normal. They’re not from a virus or a parasitic infection — they go on for too long for it to be from those causes. 

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About IBD Podcast Episode 107 Cover

About IBD Podcast Episode 107 – Colitis Conversations: Getting an Accurate Diagnosis

Once people understand that symptoms like ongoing diarrhea and bloody stools are not normal, they need a way to overcome embarrassment and talk their symptoms over with a health care provider. Having an open and honest conversation will help ensure a quicker diagnosis of ulcerative colitis and getting the right treatment.

On this episode, Rasheed Clarke, ulcerative colitis and j-pouch patient and author of Three Tablets Twice Daily and Dr Christina Ha, an IBDologist at the IBD Center at Cedars Sinai, provide support and guidance to patients with IBD symptoms, newly diagnosed patients, and anyone who is looking for a new way to speak with their health care providers about IBD treatments.

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About IBD Podcast Episode 105 - What Remission Means to a Teen With Ulcerative Colitis

About IBD Podcast Episode 105 – What Remission Means to a Teen With Ulcerative Colitis

Inflammatory bowel disease (IBD, Crohn’s disease, ulcerative colitis, and indeterminate colitis) is being diagnosed in young people with greater frequency. Research on how to treat pediatric patients, and indeed how to prevent IBD in the first place, is still lacking. What’s not in short supply is the strength and resilience shown by pediatric IBD patients and their families. Meet Brooke, a pediatric patient at Connecticut Children’s Hospital who credits her dedicated IBD team with her ability to live a life filled with summer camp, dance, and tennis lessons, without the symptoms of ulcerative colitis. 

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J-pouch Patient Bill of Rights Of Support

J-pouch Patient Bill of Rights

I was overdue.

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. 

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About IBD - Episode 90 - Fully Vaccinated Against COVID-19

About IBD Podcast Episode 90 – Fully Vaccinated Against COVID-19

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.

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Climbing the Steps to Pandemic Recovery

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.

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About IBD Podcast Episode 87 - COVID-19 Vaccination With UC Patient Rosanne Mottola Final - About IBD

About IBD Podcast Episode 87 – COVID-19 Vaccination With UC Patient Rosanne Mottola

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.

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About IBD Podcast Episode 74 – Find Those Things That Make You Happy

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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About IBD Podcast Episode 73 - You've Got to Find the Humor in Things

About IBD Podcast Episode 73 – You’ve Got to Find the Humor in Things

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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