I found out about the Patient Coaches Program through Patient Coach, Kristen Cosner! She posted on her Instagram page, Kristen’s Chronicles, that she had just accepted a job working with other ostomy patients. She explained a little bit about the Patient Coach Program in her post, and after reading about it, I knew that I somehow had to become a part of this magical, life-changing program!
Being a Patient Coach, I want to help, work with, and support other patients in ways that I was not. I was lucky to have the support of my amazing family, but it was very difficult for me because I didn’t have any ostomy-related resources. In fact, I didn’t even know what an ostomy was prior to my surgery! Working as a Patient Coach, I hope to help others the way that I needed it – through both emotional and technical support, as well as through friendship. I want each of my patients to feel as though they are talking to a friend at the other end of the phone line and not just their PC. Establishing healthy, supportive relationships with patients will make their physical and emotional recovery that much easier.
I am twenty-seven years old and live with a permanent ileostomy! I currently live in Colorado with my husband and our zoo of fur babies, but we never know where we will end up next because we are a military family. I have had my ostomy for two and a half years and can honestly say that I wouldn’t change it for the world. I was diagnosed with Crohn’s Disease at the age of fourteen, and after ten years of active disease and intense scarring, my colon turned precancerous. I chose to have my colon removed to avoid any chance of cancer in the future. While it was a hard decision at the time, I look back at it now and couldn’t imagine my life without my ileostomy. My ostomy has given me hope, strength, a voice, confidence, and most importantly, health! Instead of sitting out on the sidelines, I finally feel like I am in the game. I am enjoying life to the fullest.
My ostomy has changed my everyday life in more ways than you can imagine. I was naive as to how my life would change, but I quickly learned that it changed for the better. Since having my ostomy, my disease symptoms are manageable, and I’m not spending my life on the toilet. I am no longer in pain! I can also eat foods that I once wasn’t able to, such as pork, shellfish, and lettuce. Moreover, I can do so many activities that were uncomfortable before such as hiking! My life has changed in a lot of significant ways but also in minor ways. Things that are typically taken for granted, like riding in a car, were nearly impossible for me. I can now ride comfortably and not worry about locating the next gas station restroom. My ostomy has given me the power to be present. I never knew how much I was missing until I got my ostomy.
Connect with others! This is so important for not only your physical health but also mental health. It is essential to know that you are not alone. When I had surgery, I didn’t know any other ostomates, and I felt alone. Connecting through social media platforms such as Instagram and Facebook are a great way to meet others just like you. I had no idea that there was an entire ostomy community on Instagram until I took a chance and connected with others. You should never feel alone, embarrassed, or ashamed. Living with an ostomy bag is a huge change and adjustment. You will be surprised to know that there is a whole community out there cheering you on and wanting you to succeed. They are fighting the same fight and understand. Connect, connect, connect!