My Name is Kelly
I was officially diagnosed with Crohn’s disease in the fall of 1995 at the age of 22. My symptoms came on very quickly, so much so, we were convinced I had a parasite from camping or a flu.
As we were living in a remote northern community in Canada, there were no full time doctors, only nurses at the nursing station. I went in and they did some stool tests as well as repeated blood work and I was told to go home, reduce my stress and take Pepto-Bismol for my symptoms. Prior to being finally diagnosed, I had bleeding, severe cramping, thrush and was constantly running for a bathroom. On September 1, 1995 I weighed 112lbs. When I was finally diagnosed in November of 1995, I was down to 82 pounds. I couldn’t even take a sip of water without running to the bathroom, doubled over in extreme pain. I was very, very ill.
Finally, I was sent to see a gastroenterologist in a larger city. He immediately ordered a colonscopy as well as an endoscopy. His diagnosis was Ulcerative Colitis and put me on a round of prednisone and Asacol. Magically, my symptoms disappeared and I started to feel better (thanks prednisone!!!) but in reality it was just masking my symptoms and my disease raged on.
Fast forward to 1999, I was starting to feel very unwell again and was referred to another specialist in our new hometown. Newly married and new homeowners, we were planning to start our family. After a scope and some bloodwork, we went to see the doctor where he told me that I had severe Crohn’s disease and I would likely never be well enough to carry a pregnancy to full term. He wanted to put me on Imuran and warned me of the side effects of getting pregnant while taking it. I was 26, newly married and all I wanted was to be a mom. I refused his recommendation and left his office. I continued to take a maintenance drug called Mesasol which, I know now, did nothing to help my symptoms or manage the severity of my disease.
In the spring of 2000, I found myself pregnant, much to both of our surprise! We welcomed our daughter, Lara Victoria on January 8, 2001. Though out my pregnancy, I felt amazing. I was eating and exercising. She was born a healthy 6 pounds 13 ozs. She nursed immediately and thrived.
I, however, did not. The lack of sleep, the constant nursing and the stress of being a new mom caused my Crohn’s to flare with such vengeance that my parents came in October of 2001 and stayed for a couple weeks to help me out. During that time, I had more scopes and more testing. Same diagnosis and same offer of medications. I refused. Looking back now, I see where I went wrong and how I wished someone would have told me what this disease could do to a person’s body.
For 9 years I struggled to be a mom, a wife as well as work fulltime as a 911 dispatcher. In late 2010, I was in a full on flare. My husband was overseas in Afghanistan training police officers, I was taking a grueling French language training program and was a single mom to our beautiful daughter. Since we had moved across the country, I was referred to the head of the Gastroenterology Department at the Ottawa Hospital. My new doctor, Dr. S, did the routine testing and got me started on some stronger medications. I moved through the series of medications I had shunned earlier until finally I started to take Humira. I didn’t ever reach remission but I was feeling better. In 2012, I went in for a routine stricture dilation and unknown to all of us, my intestine tore and I had a small perforation in my large intestine. Three days later, I underwent emergency, lifesaving surgery. When I woke up in the ICU from being in an induced coma for days, I had a temporary loop ileostomy. I was absolutely devastated. It was a very dark and sad time for me. Thank goodness my family was there to help pull me up and get me on track. Without my husband, daughter and parents, I would have given up.
In September 2014, I had my large intestine, colon, rectum, and anus removed and a permanent ileostomy created. As of today, there is zero Crohn’s disease anywhere in my body. I finally feel like I have my life back. I am not on any medications other than some vitamins that I chose to take.
In May 2014, prior to my second surgery, I spoke to a group of 600 women at a fundraiser for Crohn’s and Colitis Canada talking about living with a debilitating disease and an ostomy. I talked about how it is so important to not ignore symptoms and to take the medical advice from professionals you trust. I received a standing ovation from 600 strangers that now know about my disease, my ostomy and my Barbie butt!
My ostomy changed my life. I am now able to walk, do yoga, bike ride, camp, travel all over the world, work full time and finally be the mom I knew I could be. In December 2016, I finally completed my Bachelor of Business Management degree that I started 6 years earlier and was awarded three scholarships during my courses. Not too bad for a 44 year old student!
I count my blessings every day because I know everyone’s story is not like mine. While my body has been changed physically and I no longer wear the clothes I used to wear, I am very thankful that I have been given the opportunity to live this life and make a difference where I can.