Hello! My name is Charlotte Rensberger and I am 37 years old. I live in Michigan with my husband of 14 years and our two crazy children. I have a permanent ileostomy and I am one of 11 Health’s new Patient Coaches.
In this world of technology, the first place that many go for information is the internet. A few months ago, searching for some tips and tricks for caring for my ostomy, I stumbled across the 11 Health Website and the Patient Coach program. The more I learned about the program and its mission, the more I wanted to become involved. One of the things that I liked about the program was that all the coaches are patients themselves. I thought that was a huge benefit, because the advice they give is related to first-hand knowledge and not just what they have been taught. I am so excited to have the opportunity to be a part of the Patient Coaches program.
I was diagnosed with Ulcerative Colitis as a teen and received my J-pouch and temporary ileostomy quickly after diagnosis. I struggled mentally to deal with having an ostomy, as I was already dealing with all the changes related to experiencing puberty. I had a great support system, but no one had been through the things that I had. I felt very alone.
In the early 2000’s, my diagnosis changed from U.C. to Crohn’s Disease. I had my J-pouch for 16 years and it functioned exactly as the doctors told me it would. I had some issues with urgency and pouchitis, but didn’t require any maintenance medications to keep my Crohn’s at bay. In 2015, the J-pouch failed and, despite medicinal efforts to get everything back under control, I ended up requiring a permanent ileostomy. I was so traumatized from my experience of having an ostomy as a teenager, that I put surgery off as long as I could. Looking back, I wish I wouldn’t have waited so long.
Life with an ostomy is different, but not always in a bad way. I think back to life before my permanent ileostomy, when I was having accidents requiring full clothing changes, when I couldn’t go to a movie, because I would spend half of it in the bathroom, and when I couldn’t ride in a car for longer than 30 minutes without having to stop. These are all things that I can do now because of my ostomy.
Initially, I grieved having an ostomy, then I spent time hiding it and I found myself in a depressive state. Once I decided to embrace my new reality and educate and advocate more for myself and my situation, I found that I had a new sense of power. I named my stoma and gave her a place in my life; Whinnie. I don’t hide her anymore and I am always willing to answer questions. I now try to focus on the big picture and not on the little details, as well as on the things that I can do because of my ostomy and not on what I can’t. One thing that I can do is use my experiences to help others have a little bit less trauma in their journey than I had; that’s what I aim to do as a Patient Coach.