Hi, I’m Kiera.
This is my story about how I became an “ostomate”…
In late July 2016 I got a virus which activated my immune system. After the virus was gone, my immune system stayed locked on. It proceeded to attack my heart, liver, lungs and colon. My body, in trying to stop my colon from bleeding, created clots, which got stuck in my lungs. Within 2 days of being admitted at Kingston General Hospital (KGH), I was airlifted by helicopter to the Children’s Hospital of Eastern Ontario in Ottawa (CHEO). There, they put me through all sorts of tests and monitored me in Intensive Care. Doctors were so puzzled by my situation, I became well known in the hospital. Two weeks later, my colon was bleeding 2 ½ cups of blood an hour. I went into shock and surgeons immediately took over.
I was already at very high risk – bleeding to death but as the same time suffocating from the blood clots. Within half an hour, I was prepped and in surgery. After 5 ½ hours doctors reported surgery was successful. The surgeon told us if had he not removed my colon I would have died within an hour or two. Every time we see him he reminds me how lucky I am to be alive.
My colon was so badly damaged that when the surgeon removed it, it disintegrated in his hands. As a result, some of it was left behind in my abdomen, which became infected – the reason why I was on the most potent antibiotics a child could be prescribed.
Through all this, my veins were practically non-existant from dehydration and, because of trauma to my body from so many medical procedures, they began rolling. Thankfully, the double line PICC that KGH put in my heart, was instrumental in helping me get lifesaving medications, anesthetics and nutrition into my body.
I continued to be incredibly sick for the remaining 1 ½ months at CHEO. After my colon was removed, doctors were able to concentrate on other organs that had been damaged. Even still, my body was trying to adjust to having an “ileostomy” (an opening on the right side of the abdomen that allows the small intestine to excrete waste into a pouch). For a couple of weeks I had a tube down my nose and throat that continually removed liver bile from my stomach (normally it goes down, but the body was confused from surgery, and sent it up). On top of this, I continued to fight abdominal infection and additionally get sick from the potent medications and opiods that were being injecting into me.
When we returned home, I remained quite ill until the Infectious Diseases Doctor at KGH changed my antibiotics to ones that were more orally and stomach friendly. We also continued with twice daily, blood thinning needles.
At home, my mother became my “Ostomy” nurse. It took both her and I a fair bit of time to learn how to manage our “new normal”. In the beginning we had a lot of struggles, including finding the right medical appliances.
When people have pitied me, or my situation I have told them, “I’m not broken” and “I’m not disabled”. Having my colon removed saved my life! Through this experience, my family and I have realized there is a lot of STIGMA around having a “bag of poo” hanging from your hip. But I am STRONG and hope to be instrumental in creating AWARENESS about ostomies. I encourage anyone with questions to ask!
I may someday have “reconstructive surgery” (being put back together, but differently). At this time, I am interested in helping others understand what ostomies are and decreasing the stigma associated with it.