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.
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.
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.
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.
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.
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.
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.
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.
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.