Joanna Burgess, RN, CWOCN
2011 Great Comebacks® Award Recipient, South Region
"One of my mentors came over to me and asked me to speak to a patient who was very depressed after surgery for a colostomy. I calmed him down, told him my story and I saw him just transform before my eyes."
Joanna Burgess’ ostomy journey of 45 years began when she was just 3 years old. She was diagnosed with a rare type of bladder cancer and given only a 10% chance of survival. Treatment including a urostomy and radiation saved her life, but it also caused many lingering health problems that still continue today. Strong cobalt radiation therapy affected the growth of her bones, and for much of her life she has had difficulty walking and recurring pain caused by radiation-induced colitis. She underwent bilateral hip replacements and bypass surgery to try to improve her walking, but Joanna would never regain full motion in her legs. Through all of her medical challenges, Joanna’s positive attitude and desire to help others kept her going. She went on to earn her Bachelor’s degree in nursing, initially specializing in pediatrics. She has also been involved in mission work in other countries including the Dominican Republic, Ecuador and Honduras.
"My passion has been to give back as part of my own journey to come back fully into life. I feel that I am succeeding and have been a source of strength for many people needing hope and guidance," said Joanna.
Joanna soon found another passion in helping patients with lymphedema, a condition that causes severe swelling of soft tissue. When lymphedema caused her own leg to swell, she learned about Lymphedema Therapy, a special healing process. She used the therapy to treat her own leg and became certified to help others. Through her efforts she was also inspired to become a national advocate for lymphedema patients and cofounded one of the first lymphedema treatment centers in North Carolina.
As she continued to focus on providing care and support to many patients, Joanna faced new health challenges as her colitis became worse. At 4’11", her weight dropped to 89 pounds and she suffered from extreme fatigue and discomfort. In 1995, she made the important decision to take action to end her pain and undergo surgery for a colostomy. Used to providing support to others, she found that the support of many friends, family members and fellow nurses helped her to get through the long recovery period.
Though she was labeled "disabled" because of the effects of radiation treatment and the prospect of working in a large hospital made her nervous, she once again faced the future with courage and determination. In 2008, she completed her studies to become a WOC nurse.
"By that time, I had not worked in a hospital since 1990. I really had to push myself to get this certification, but now I can say it was the best thing I have ever done," said Joanna.
In addition to medical care, Joanna is proud to be able to give hope and support to many ostomy patients. She shares her story with almost every patient she works with.
"When I was a very new WOC nurse, one of my mentors came over to me and asked me to speak to a patient who was very depressed after surgery for a colostomy and was talking about committing suicide," said Joanna. "I calmed him down, told him my story and I saw him just transform before my eyes."
Today, Joanna helps to make sure that anyone needing to talk to someone about their ostomy has an informed and compassionate resource available to them.
"It makes a difference to see someone functioning well and happy with an ostomy when you are just starting out on that journey. When I was growing up, I kept thinking, ‘I wish there was somebody like me I could talk to.’"
In 2010, Joanna married her husband Ross, who continues to be a vital and supportive partner in building her confidence. She also cares for four rescued pets and serves on the board of an environmental service organization. And even with these important responsibilities, Joanna is now working to open an outpatient ostomy clinic at her local hospital so that patients in her area can access educational materials prior to surgery and work with an ostomy nurse through all of their follow-up care.