By Heather Brigstock, ADN, RN On May 2, 2001 I underwent a total proctocolectomy resulting in a permanent ileostomy. I was 22-years-old and four years into my battle with Crohn’s disease. My first experience with an ostomy nurse was my pre-operative appointment for the stoma site marking. At the time, I had no idea how lucky I was to meet with a certified ostomy nurse. I didn’t even know what a Wound, Ostomy and Continence Nurse (WOCN) was, but during those first days of recovery in the hospital I figured out very quickly that ostomy nurses were my lifeline. I tried to listen and retain everything I was taught in the hospital, but between the pain, nausea and orthostatic hypotension, I went home feeling overwhelmed. The day I got home, I had a dehiscence of my abdominal incision which was draining copious amounts of fluid and was very scary. My home WOC nurse, Zora Hocking was there for me. She taught my family how to pack my wound as I embarked on a long and slow process of healing. My WOC nurse stressed the importance of nutrition in my healing because at 5' 8", I was only 95 pounds. On top of all of this, I kept having leaks under the wafer of my ileostomy appliance. I felt like I was falling apart. Zora switched me to a different pouching system - the same system I use to this day because it's the only one I can wear without leaking. Something as simple as making the leaks stop was a huge boost in my confidence level. I could leave the house with confidence for the first time to go to my appointments. Slowly, my abdominal wound healed and I adjusted to life with an ileostomy. I gained some weight, was discharged from home care and returned to work. Over the next few years, I went back to nursing school and became pregnant for the first time. After delivering my baby daughter, I was visited by WOC nurse, Marsha Connelly to make sure my ostomy was doing well. I had no complications from the pregnancy or delivery, but about six months later my stoma retracted. I started having leaks and my appliance wouldn't stay on for more than 12 hours. I didn’t know what to do because there wasn't any outpatient WOC nurses in my area, so I called Zora and asked for her help. After assessing me, she knew I needed to see a colorectal surgeon for a revision. The day after the final in my anatomy class, I went in for a revision which turned into a bowel resection as well. Marsha was my WOC nurse in the hospital and she helped me adjust to a new stoma in a new location. She and Zora were tasked with getting me up and running within two weeks of surgery because my summer chemistry class was starting soon. Somehow, they did just that and I was able to attend the first day of my class. I had steri-strips still on my abdomen, but I made it. Soon after, I was an official nursing student. The most rewarding experience I had in nursing school was taking care of a new ostomate. My patient was struggling and would not even look at the ostomy or acknowledge that it was there. I asked him if he would like to know what I like about having an ostomy. In that moment, I could see a wall come down in his eyes. “You mean you have an ostomy?” he asked. I nodded and smiled. “But I couldn’t even tell!” he told me. “No, and no one will be able to tell you have an ostomy either” I responded. By the end of that shift, he was emptying his pouch independently. Just knowing that he wasn’t alone was enough. The experience of taking care of a new ostomate lit a fire inside me. I knew that I had found my passion, but I was overwhelmed being a new nurse and any additional education seemed out of reach. When I graduated from nursing school, I had my second baby girl and went to work as a new nurse. Several years passed by and I experienced a severe relapse of my Crohn’s disease. On top of this, my stoma was retracting again. By this point, I had two young daughters who were quite proficient in ostomy care. At times, they would wear one of my pouches to “look like Mommy.” Due to the disease and the retracted stoma, I had to undergo a third bowel resection and second stoma revision. Once again, Zora was by my side, helping me adjust to yet another stoma in yet another location. I've had my ileostomy for almost 15 years. The same WOC nurses have taken care of me that entire time. It's like seeing old friends who have coached me through a very long journey. If I didn’t have the care of amazing ostomy nurses, I would never have had my children and I would never have had the confidence to go to school. In August, 2015 I graduated with a Master of Science in Nursing from the University of San Francisco. Immediately after graduation, I started in a WOC Nursing Education Program. My area of focus has been the long-term support of ostomy patients. Without WOC nurses, there would be no long-term support for patients like myself. Like the patient I took care of when I was a student years ago, we all have a need to feel understood. WOC nurses are the only people we can turn to when we have a complication. All patients with chronic health needs deserve to have competent care, ostomy patients like myself deserve to have access to a WOC nurse. Nothing less will do. This post originally appeared January 7, 2016 on www.wocn.org.
No More Secrets: An enlightening film that reveals the stigma of having an ostomy in India.
Anisha Vijayan no longer wants ostomies to be a shameful secret in South Asia.