Guest Editorial: Forging the Clinician-Patient-UOAA Partnership
Nineteen years ago, as a very frightened and bitter 15 year old, I had ostomy surgery as a result of Crohn’s disease that had ravaged my body for six miserable years. I was hopeful for the potential health the ostomy offered me, yet terrified of the journey that I’d have to make to get there.
Two days post-surgery, a young nurse entered my hospital room, flung open the blinds on the window and, ignoring the “Do Not Bump My Bed” sign posted above me, positioned herself on my bedside. “I’m the enterostomal therapist,” she said. “I’m going to teach you how to take care of your ostomy.” I didn’t know it then but that meeting would lead to a life-changing relationship for which I will be forever grateful. That young nurse taught me far more than how to complete the simple basics of ostomy care. She gave me the tools I needed to embark on my journey toward finally living again — not just an ostomy pouching system and a few brochures, but also the courage to learn to care for myself, confidence in my medically altered body, and perhaps most importantly, information about organizations and other resources that would champion and support me in my journey with an ostomy.
Since my initial surgery 19 years ago, a great deal has changed in the ostomy world — surgical procedures, pouching systems, even the names by which we call clinicians that provide ostomy care. But many things are still the same. The need for patient education and support, pre- and post surgery, will always exist.
As President of the United Ostomy Associations of America, I encourage you, as clinicians, to learn more about our organization and the resources we provide to help you meet the needs of your patients. With more than 290 affiliated support groups across the nation and several online communities, the UOAA offers patients and their caregivers the opportunity to connect with others for mutual support. Our comprehensive website (www.uoaa.org) is home to various educational guides, advocacy information, and a new Living with Ostomy video (also available in DVD) that highlights people with ostomies of varying ages and activity levels doing both the ordinary and the extraordinary and talking about their journey to acceptance. Our quarterly publication, The Phoenix, is the leading ostomy patient magazine, and features professionally written, indepth articles on topics of concern to new and experienced ostomy patients, such as stories of recovery after colostomy, ileostomy, urostomy or continent diversionary surgery; ostomy care advice in “Ask the Ostomy Nurse” and “Ask the Doctor”; and information on living a full life with an ostomy.
The UOAA has a vision: a society where people with ostomies and intestinal or urinary diversions are universally accepted and supported socially, economically, medically, and psychologically. As a clinician providing ostomy care, you play a key role in helping the UOAA make this vision a reality. You are instrumental in setting patients on the path toward living a fulfilling life after ostomy surgery. We hope that you’ll allow us to assist you in guiding your patients to success.
This article was not subject to the Ostomy Wound Management peer-review process.