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Authors

  1. Lynggard-Hysell, Keagan

Article Content

"I'm out of bags!" It had been less than 12 hours since I was discharged from the hospital and I had already gone through the entire emergency kit containing three ostomy pouches, adhesive remover wipes, stoma paste, powder, and skin prep wipes that were sent home with me. These supplies were intended to last until the nurse arrived the following Monday. I had undergone ileostomy surgery due to a recent diagnosis of Crohn's disease and because of several complications postoperatively, I had spent a total of 8 months in the hospital. During that time, I had weekly visits with a Wound Ostomy Continence (WOC) nurse. My WOC nurse instilled self-confidence in me from the very first visit. I was taught techniques on how to properly pouch my stoma, manage leaks, master the crusting technique, and manage a draining fistula.

 

I felt like I had the ostomy routine down to a science, and yet, here I was standing in the middle of my bathroom with a bare stoma and no supplies. I made-do that first night home with washcloths, maxi pads, and gauze. The next morning a nurse arrived for an "emergency visit." Upon first glance at my situation the home nurse replied, "Oh, an ostomy... I haven't worked with one of those in over 15 years." Here I was in complete desperation (and humiliation) looking for reassurance but instead I was met by a nurse who only caused more doubts. Again, I made-do and managed to make it to Monday's visit with a leaking bag and peristomal skin excoriation. Fortunately, this scheduled visit went much differently, my nurse was empathetic and patient with me, and although she did not have much ostomy experience her care left me feeling confident and capable.

 

As new ostomates, we rely heavily on support and guidance from our home healthcare nurses to encourage us during the transition from hospital to home but also in adjusting to a new way of life. Many ostomy patients may have only received 1 day of teaching in the hospital before discharge. Additional factors such as pain medication, shorter postoperative stays, and the overall sense of being overwhelmed with a "new normal" really impact how patients are able to learn about self-care. Through my experience as a patient as well as through my advocacy efforts, I have learned that there are not enough WOC nurses in home healthcare.

 

I want to encourage home healthcare providers to meet each of their ostomy patients where they are at. The physical and emotional healing timelines will differ from person to person. One thing to consider when trying to support your patient is your demeanor. Don't act intimidated or scared; as a patient, it is reassuring when our caretakers appear confident and accepting of our stoma. Your attitude toward patients or their ostomy can strongly influence the way the patient adjusts and may impact their journey toward acceptance. Ostomy patients need home healthcare nurses to teach us how to live with an ostomy, not just recover from surgery, so be sure to ask your patient what they need help with.

 

My personal struggles inspired me to get more involved within the ostomy community in an effort to seek out support but also to provide support to others through the United Ostomy Associations of America. Despite my initial struggles as a home healthcare patient, I have also been provided with great care from wonderful nurses; many who were willing to learn from my past experiences. Home healthcare providers play such an essential role in the lives of ostomates and I want to encourage you to support your patients during such a pivotal transformation to a new way of life. Visit http://www.ostomy.org/advocacy/ and learn how you can advocate for your patients with ostomies.