A new column in the Red Section of The American Journal of Gastroenterology introduces patient voices and shines light on their experience of medical care. Section co-editors Hetal A. Karsan, MD, FACG and Sameer D. Saini, MD, FACG hope these featured articles will help AJG readers to better understand the patients they see in everyday practice. Two recent articles showcase patient voices.
Functional Bowel Disorders: A Patient’s Perspective
Nancy J. Norton, BS, International Foundation for Functional Gastrointestinal Disorders, Milwaukee, Wisconsin
Nancy Norton, founder of IFFGD, is a prominent advocate for the study and treatment of functional gastrointestinal and motility disorders. On behalf of IFFGD, she organizes the biennial International Symposium on Functional Gastrointestinal Disorders, a forum for international experts.
For more than 25 years she has been an advocate on behalf of patients with functional GI disorders, and she has been a patient herself. According to Ms. Norton, “To the patient, illness is based on their lived experiences, not solely on the signs and symptoms. That can mean loss of or change in physiological functions, in self-image, or in levels of work, group interactions, personal relationships, and intimacy. Having a chronic bowel disorder places daily challenges on the individual, which add to the burden of their illness.”
Living with Gastroparesis: A Little Hope Goes a Long Way
Crystal M. Saltrelli, CHC
Diagnosed 12 years ago with idiopathic gastroparesis at age 23 after her graduation from Dartmouth College, Crystal M. Saltrelli worked with her physicians to address her severe symptoms, but almost lost hope. Then in 2009, she had a gastric neurostimulator implanted.
“The device provided much-need symptomatic relief, but, equally important to me, it also provided some much-needed hope. My surgeon was so optimistic, so encouraged that it reignited those feelings in me. This time the message I heard was, ‘There is still hope for you. There is more that can be done.'”
In her moving and perceptive piece, she details her journey to become an advocate. “Six years later, I am now a gastroparesis educator in addition to being a gastroparesis patient. I have had the opportunity to work with hundreds of other people with gastroparesis from around the world and what I have discovered is that my experience is not unique. Patients are eager to commit themselves to their treatment plans, as long as there is an inkling that their effort will make a difference in their outcome.”
Crystal Saltrelli shows how she continues to find reasons for hope as a gastroparesis patient.