Research
Nurse's Research Improves Quality of Life for IBD Patients
As a 32-year veteran certified gastroinestinal nurse in the General Surgery Inflammatory Bowel Disease Center at the University of Chicago Medical Center, Michele Rubin, APN, CNS, CGRN, is a highly skilled clinician. But she also is acutely focused on the quality of life for patients with inflammatory bowel disease (IBD), and, in particular, ulcerative colitis.
"These patients have gone through a lot in their lives in dealing with the often debilitating symptoms of abdominal pain and frequent bloody diarrhea that is associated with ulcerative colitis," said Rubin. "They adapt and accept the life changes the disease imposes and often develop a tolerance to pain and suffering. Many have forgotten what 'normal' feels like."
While removing the colon and rectum offers a permanent cure for ulcerative colitis, many patients refuse the procedure because they don't want to live with a permanent stoma (abdominal opening for eliminating waste). In an ileal pouch anal anastomosis (IPAA), commonly called J-Pouch surgery, the colon and rectum are removed, but a new rectum is formed from the patient's small bowel. This affords patients the ability to pass stools normally and enables them to avoid living with a permanent ileostomy.
In her practice, however, Rubin noted a different problem among IPAA patients and she became determined to find a solution. Because patients can eliminate waste normally, the procedure offers a dramatic quality-of-life advantage.
But problems can occur within the first year of living with an ileal pouch. One such often-overlooked problem is perianal incontinent dermatitis (PID), essentially a rash in the perianal region that can cause severe soreness, burning or itching if not recognized and treated. Rubin wanted to help her patients avoid this uncomfortable condition, and she applied for a grant to support her research into the condition's incidence and contributing factors.
Rubin, a clinical nurse specialist and a National Board of Trustees member of the Crohn's and Colitis Foundation of America, earned the $5,000 grant in November 2009 from the Wound Ostomy Continence Nursing Association (WOCN). She jumped at the chance to learn more about the causes of the condition and, ultimately, improve the quality of life for patients at the Medical Center and beyond.
"I felt it would be a great way for me to bring about an increased awareness of perianal dermatitis and the contributing factors among healthcare professionals and patients with an ileal pouch reservoir," Rubin said.
As part of her study, Rubin follows IPAA patients every three months during the first year after their procedure to assess dietary intake, bowel function and perianal skin.
"Patients go through a period of adaptation in which they learn how dietary intake of food and liquids can affect the number, frequency and consistency of their bowel movements, as well as the possible development of perineal dermatitis," Rubin said.
Rubin compiled a group of 21 patients 18 years and older for the study. The patients complete a self-administered questionnaire that Rubin created about dietary and bowel habits prior to scheduled clinic visits. They also take a Life Events Stress Test questionnaire at the start of the study and then at six- and 12-month intervals, and a perceived stress test each time the rash occurs. Some patients have also provided photos of the rash at the time of occurrence to help Rubin assess its severity.
Rubin learned that loose stools are one of the main contributors to PID, and that proper diet and use of anti-diarrheal medication can improve bowel functions for patients, therefore decreasing the chances for the rash to occur in the first place. Furthermore, patients noting an increase in stress often neglect their diet and also fail to take preventative action, such as using a barrier ointment.
When patients do develop the rash, Rubin has often been able to look back at the questionnaires and determine what may have caused it. She can then provide specific instructions to the patients. "PID can be debilitating," Rubin said. "But this information can make a huge difference."
Through Rubin's research, she hopes to find ways to help this group achieve more comfort through prevention and treatment. Rubin plans to write a paper and speak at a WOCN conference about her findings.
"This knowledge will provide nurses with a framework for the design and implementation of patient education initiatives for early recognition, detection and prevention of PID," Rubin said.
