The content in this blog was provided by Charlotte Rensberger, Blog Coordinator at Girls with Guts
I was diagnosed with Ulcerative Colitis and had my first ostomy as a teenager. As if pimples, periods, and boobs weren’t enough to deal with, I had to come to terms with the fact that I was now pooping from a hole in my stomach. At that time, I was treated by an adult surgeon and placed into an adult shared room. My WOC nurse then made it clear that not only did she not take care of many pediatric patients but that she also did not particularly enjoy them. I had nothing but trouble with that ostomy, and probably have some PTSD related to that experience. After nine months, I was able to get my j-pouch and leave that ostomy in the past.
Fast forward to 2015 and a failing j-pouch. I was so sick. I drove from southwest Michigan to the University of Chicago for a second opinion. That’s where I met Michele Kaplon-Jones, my new WOC nurse. I met her pre-surgery, where she did a ton of teaching, tear wiping, and hand holding. It was such a struggle to get past all the negative thoughts I had from my teenage experiences. But Michele set the stage during my first encounter with her, and I believe she prepared me for success… even if the surgery didn’t go well. I don’t have a great memory of those first few days; but I do remember Michele checking in on me every day—even when I didn’t have any medical needs for a WOC nurse to take care of.
"That’s where I met... my new WOC nurse. I met her pre-surgery, where she did a ton of teaching, tear wiping, and hand holding."
I live about 2.5 hours away from Michele’s clinic. I have been working to establish a local care team, but I just can’t give her up!! Michele's demeanor is one that just makes you want to be genuine with her. I feel like I can share anything without judgement. My stoma gives me trouble occasionally and requires a lot of convexity. Michele still checks on me—even from afar via email. She gives me so much encouragement and confidence, that the inconvenience of the 2.5 drive to see her is priceless.
I have also found support through a group called Girls With Guts (GWG). Since GWG began in 2012, it has empowered thousands of women with irritable bowel disease (IBD) and/or an ostomy. Through Girls With Guts, IBD patients can learn the latest medical updates. The organization also gathers supplies that can be sent to women in need. You often see new ostomates connect with veteran ostomates to find out that life doesn’t end with a stoma.
Like many, I developed close friendships and bonded with women who experienced the same pain, questions, and frustrations I had. When I go to our private online forum on Facebook, I know someone in the group had something happen to them that I can relate to. These experiences are invaluable for my well-being and future.
I am now a Pediatric Nurse Practitioner. After reading post after post from Girls With Guts, it is clear we need more experienced and caring WOC nurses. After surgery, ostomates often feel alone—but they don’t have to feel that way. I learned that from my WOC nurse's compassionate care. So, I started looking into becoming a certified WOC nurse last year. I was accepted into the Rutgers University School of Nursing-Camend Wound Ostomy Continence Nursing Education Program, and am now waiting to start my courses.
"...it is clear we need more experienced and caring WOC nurses."
I now have a permanent ostomy and am thankful I met Michele early on this journey. I need her and am relieved to know she’s only a phone call away. I can only hope that, at some point, I become the top notch WOC nurse that Michele is for me and to so many other ostomates.
Charlotte Rensberger is from Battle Creek, Michigan. She has been battling Crohn's disease since she was 16 years old and has a permanent ileostomy at age 36. She has been married for 13 years and has two school aged children who keep her busy. Charlotte is a Pediatric Nurse Practitioner who currently works in a community hospital's newborn nursery. In her spare time, she bakes, refinishes furniture, buys antiques, crafts, and sings with her church's worship band.