Hello!

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.

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Russell Ladies Night

That’s me third from the right, not looking at the camera and wearing sparkly shoes, with the Russell Ladies Night Committee Members!  I spoke to a crowd of 600 people about living with Crohn’s disease and an ostomy.  We raised $30,000 for Crohn’s and Colitis Canada.

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Our wedding

My husband and I were married on June 21, 1997, 18 months after my initial diagnosis.  20 years later, he is still my rock and has been with me for every appointment, procedure, and surgery. 

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.

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Ed in Afghanistan

My amazing husband spent almost a year in Afghanistan training police officers.  It was a bucket list item for him to do in his career but it meant a year away from home.  I ended up very sick the year he was gone

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Two months after my emergency surgery

in 2012, we took the trip of a lifetime to Frankfurt, Germany and then to Paris, France. I was very nervous travelling with an ostomy and so soon after such a major surgery but we had the time of our lives. It was so nice to not have to worry about finding a washroom every 10 minutes in a foreign country.

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. 

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After 1st surgery

This is one of my favorite pictures.  We had family pictures done two weeks after I was released from hospital in 2012.  My daughter was 11 years old and so very brave.  The most difficult part of all that I have been through wasn’t the pain of surgery, it was knowing that my daughter had to be told that mommy might not make it through the surgery.  That has been the most difficult thing for me to move past.  She is an amazing child, who now at 16, is much wiser and braver than anyone I know.

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Surgery scars

After my second major surgery in 2014. They moved my stoma from my left side to my right side and made “Lily” permanent. She has not only saved my life, she has given me back my life.

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NYC: August 2017

we did New York City for our daughter’s 16th birthday. I have done more and seen more since my ostomy surgery in 2012 than I had in the previous 15 years.

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My parents

These people have been my support system.  My mom stayed with us for 6 weeks after my emergency surgery and 3 weeks after my second surgery.  We would have been lost without them

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Family picture

Through all of the ups and downs of Crohn’s disease, surgeries and living as an ostomate, my husband Ed and daughter Lara, have never wavered.  They are my constant cheerleaders, tear wipers, medical staff, chefs, walking buddies and the people I love most in the world.  I am so very blessed to be loved by them.