Author Archives: Amber

Colectomy Surgery, or Body Modification?

Colectomy Surgery, or Body Modification?

When I had surgery to remove my colon (which is called a colectomy) and place an ostomy, I knew exactly what was happening. I knew I would wake up with a loop ileostomy. It was the first step in 2-step j-pouch surgery to treat my ulcerative colitis.

My colon was falling apart, full of inflammation and pseudopolyps (non-cancerous polyps that can occur with IBD). I had a few months to prepare for surgery, including meeting with my surgeon and an enterostomal (ET) nurse. When I woke up with a stoma and an ostomy appliance, it was not a surprise.

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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 106 - Every Kid We Take Care of, We Become Part of Their Family

About IBD Podcast Episode 106 – Every Kid We Take Care of, We Become Part of Their Family

How is IBD different in kids than it is in adults? When should kids be transitioned from pediatric to adult care? What’s next for IBD treatments? My guest is Dr Jeffrey Hyams, the head of the Division of Digestive Diseases, Hepatology and Nutrition at Connecticut Children’s, and a Professor of Pediatrics at the University of Connecticut School of Medicine. He provides a historical perspective on the treatment of IBD and is able to highlight how therapies have advanced over the last 30 years. He also gives some ideas about what’s on the horizon for IBD treatments and what gives him hope for the future.

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About IBD - Who Is the Base of Your Pillar?

Who Is the Base of Your Pillar?

In the spring of my junior year in high school, I met with my senior year Advanced Placement English teacher. I don’t remember much of that meeting, such as what we talked about, or even its purpose.

What I do remember is the store room she took me into.

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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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Behind the Scenes of Healthcare Disparities in IBD

Behind the Scenes of Healthcare Disparities in IBD

In 2018, I was doing on-site interviews for About IBD Podcast. I was attending a medical conference and there were several other patient influencers there as well. It was an opportunity to get a lot of audio recorded for production of several upcoming episodes.

I love recording in person. I’ve recorded in all sorts of spaces: show floors, hallways, and press rooms. I try to use my own hotel room, or even my basement, when I can and when it makes sense. I was conducting interviews in my room in Chicago when Shawntel Bethea and Brooke Abbott, of The Crazy Creole Mommy Chronicles, showed up at my door.

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About IBD Podcast Episode 104 - Lt Col Joshua Nelson

About IBD Podcast Episode 104 – Living With Ulcerative Colitis as an Air Force Pilot With Lt Col Joshua Nelson

Did you know that being diagnosed with ulcerative colitis or Crohn’s disease is a disqualifying condition to serve in the United States military? However, it seems that it’s not always an automatic reason for discharge. Lt Colonel Joshua Nelson was diagnosed with ulcerative colitis and needed to have ileostomy surgery. It cast into question his future as a pilot in the Air Force Reserve. Learn his story of how he worked with his medical team in order to keep doing the job he loves, his advice for others like him, and tips on flying that any ostomate can use.

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About IBD Podcast Episode 103 Cover

About IBD Podcast Episode 103 – J-Pouch Surgery for Ulcerative Colitis With Vikram B. Reddy, MD, PhD

Ulcerative colitis surgery is sometimes viewed as the last stop for treatment but it can be a good option to treat inflammatory bowel disease (IBD). Dr. Vikram Reddy, Division Chief of Yale Medicine, Colon and Rectal Surgery, answers questions about j-pouch surgery including how patients feel about it, how he manages his patients after surgery, what complications might occur, and why surgery for ulcerative colitis is complicated and nuanced.

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