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For many, the new year may mean starting a new hobby, signing up for a co-ed softball league, or going out on a date. Whatever New Year’s resolutions you have to jump start your social life, don’t sit on the sidelines – the start of 2018 is the perfect time to get out and enjoy relationships both new and old!
But for people who suffer from chronic diseases, like ulcerative colitis (UC), an inflammatory bowel disease characterized by chronic diarrhea, abdominal pain and cramping,[i] embracing and maintaining a social life can be challenging. I know this to be true because my oldest son suffers from Crohn’s Disease. Although he’s had it for nearly three years, he still struggles with balancing the disease with his academic and social life.
Symptoms can be so severe that some people with UC say that they feel like they spend more time in the bathroom than anywhere else.[ii] While the disease can occur at any age, it most often starts under the age of 30, and the symptoms can be debilitating.[iii] For some people, UC and its symptoms may not be easy to talk about in any relationship, and especially if you are meeting someone new.
A new survey of 301 U.S. UC patients who were surveyed online or by phone between August and October 2017 highlights that some UC patients may accept their symptoms as their way of life when it comes to living with UC, potentially forcing them to make lifestyle trade-offs.2,[iv] The survey explored a range of topics including day-to-day disease impact, goal setting and communication, and the results offer insights on the impact of the UC disease on their mental health, intimacy and patients’ personal relationships.
“The survey also found that both physicians and patients want more time to talk,” said The Mount Sinai Hospital of New York. “We know that time, face-to-face time with a physician, is precious and we want to make the most of it, and we on the physician’s side do as well. We want to get to the information that’s most going to transform a patient or a family’s life if we can get the disease under control, but we need to encourage patients from not accepting this new normal; and communicating with their healthcare professionals in an open and honest communication about the effect of UC on multiple aspects of both the patient and their family’s lives. And we want patients to be proactive about sharing their experience and their goals.”
Dr. Marla Dubinsky and UC patient Jordan Wilson joined me to share their perspective on living with chronic diseases and the latest preliminary survey results. They also offered simple strategies for discussing issues with partners and friends, and offer suggestions on resources — beyond a healthcare professional – with the goal of helping provide accurate information on topics that may not be addressed during exams with healthcare providers.
“The one thing I always like to tell patients whenever I meet them, is that they have to be their own advocate,” said Jordan. “Take their health into their own hands and really feel comfortable asking those difficult questions, because these findings, these preliminary results, show that certain topics, whether it’s mental health or maybe intimacy issues, patients feel uncomfortable bringing these up to their healthcare team. So I really want them to be able to bridge the gap in communication so that they can kind of go after this thing and take care of themselves, not just physically but maybe emotionally and mentally as well.”
Take a listen, and for more information, visit: www.Pfizer.com/UCNarrative
Meet Our Guest
Dr. Marla C. Dubinsky received her medical degree from Queen’s University, Canada. She completed her Pediatric Residency at Alberta Children’s Hospital, Calgary, Canada and her Clinical Fellowship in Gastroenterology and Nutrition at Sainte-Justine Hospital at the University of Montreal, Canada, She then completed her Research Fellowship in Inflammatory Bowel Disease at Cedars-Sinai Medical Center in Los Angeles where she then served as the Director of the Pediatric Inflammatory Bowel Disease Center before coming to Mount Sinai as the Chief of Pediatric Gastroenterology and Hepatology at the Kravis Children’s Hospital at Mount Sinai.
Her primary research focuses on the influence of genetics and immune responses on the variability in clinical presentations, treatment responses and prognosis of early-onset IBD. Her other interests include the impact of IBD on fertility and pregnancy. She has lectured widely both nationally and internationally and has published in 83 peer reviewed journals including Gastroenterology, The Journal of Pediatric Gastroenterology and Nutrition, Inflammatory Bowel Diseases, and the American Journal of Gastroenterology. She also currently sits on the editorial boards of several leading journals, including Gastroenterology, American Journal of Gastroenterology, and Nature Clinical Practice Gastroenterology & Hepatology.