Danielle uses humor and brutal honesty to share her 27-year long journey with inflammatory bowel disease (ulcerative colitis), numerous ineffective medications, and a nearly decade-long battle with insurance companies before she eventually lost her colon and ended up with a permanent ileostomy. Through advocacy events, speaking engagements, and social media, Danielle uses her voice to share her eye-opening, and horrendous journey through years of Step Therapy and chronic illness.
Growing up I was a very energetic, outgoing, happy, and healthy kid. That was the case until 1993. I was 17 years old, and in the prime of my adolescent years! For most teens, their biggest worry is what to wear to the football game or who is dating whom. For me, it was “Crap! (literally) Where is the closest bathroom??” because that’s where I spent most of my time. I planned my life around bathrooms and my bowels, because I had “to go” at least 20 to 25 times a day. Yes, you read that correctly.
For six years I saw doctor after doctor and went through countless tests. I was thin, malnourished, constantly dehydrated, nauseous and never far from the bathroom! I lost my zest for life and the ability to be spontaneous. My social life tanked. I was embarrassed, scared and found myself staying home more often.
Four of those six years I was enrolled at the Ohio State University and was studying environmental science with the hope to become a National Park Ranger – my dream job! During that time, I was misdiagnosed with having a “gluten intolerance”. As I became more ill, it became obvious that my health problems would unfortunately dictate my career choice. I knew that it wasn’t feasible to have an outdoor job when I had to worry about getting to a bathroom with as little as 30 seconds notice. Sadly, I had to change majors. Marketing was my second choice 1) because I enjoyed it and 2) because offices have more bathrooms! As my time in college ticked on, I found myself spending more time studying (usually in the bathroom) and less time socializing and enjoying this chapter of my life.
I graduated from college and met my soon-to-be husband. One month before we got engaged, I finally had a colonoscopy and was diagnosed with severe ulcerative colitis. Yay – finally, a proper diagnosis! I was immediately put on prednisone (I had a love-hate relationship with this drug), and for the next 8 years I would face a barrage of tests and new medications. Often, my doctor would tell me that he had a good idea which medications would give me the best shot at reaching remission, but...I had to try other (cheaper) drugs first. My body was put through hell and back just to try meds my doctor knew wouldn’t work for me. I soon realized it was the insurance companies calling the shots and not my doctor! I had to spend a certain amount of time on a drug and fail it before I could move to the next one. This caused terrible side effects that weakened my immune system and caused further damage to my large intestine.
My husband changed jobs a few times, and with that came new health insurance. There was a clear pattern from plan to plan, and it was confusing, detrimental and frustrating for both my doctor and myself. I couldn’t understand why I was required to go back on medications that I had ALREADY tried and failed (on a different insurance plan) before I could get the drug my doctor originally wanted to prescribe. One step forward, and at least two steps back, all the while I was just getting sicker and my large intestine was becoming damaged beyond repair.
Our medical bills skyrocketed. Deductibles and co-pays started over with every new company, as did the step therapy requirements. My doctor and his office staff spent days on the phone talking to my insurance companies, yet it didn’t seem to matter.
This went on for 8 years…8 long years, while my disease advanced and my symptoms did not dissipate.
During this time, my husband and I were blessed to have a child. Family was far away and visiting required long road trips. How does one that goes to the bathroom 20-25 times a day deal with roadtrips, you ask? I had a camping toilet installed in my car. Yes…that’s right. I even made little curtains for “privacy.” Hard to believe, but this was my reality. My little daughter thought that all cars were equipped with a potty. Little did she know.
After all drugs had failed and I was steroid-dependent, I made the choice to have ostomy surgery in 2007. It was the best decision I had ever made! I found out that my colon was so badly damaged that it was a ticking time bomb, and my permanent ileostomy saved my life!
In 2014, I met my best friend, Joe, in an online support group. Together we created Double Baggin’ It. We are both IBD warriors, permanent ileostomates, comedians, speakers, advocates and Two Best Friends without Buttholes! We use humor and our stories to connect with and support other people living with ostomies and inflammatory bowel disease. Follow us on Instagram, Facebook, Twitter and YouTube, @DoubleBagginIt, www.DoubleBagginIt.com
