Student recalls being diagnosed with ulcerative colitis at the age of 10
As if it was the most important milestone of her life, Gloria Luft, 52, recalls the first time she realized something was wrong with her baby boy: me.
“It was Christmas time in Grande Prairie, and you were 10,” my mother says, more than 12 years later.
“I took you to the hospital because I knew it was more than the flu.”
Earlier that week, she discovered that there was blood in my stool, and I was running to the bathroom an unusual number of times a day.
Much like a wedding or graduation, that moment she took me to the hospital became a pillar in our lives and the first wall in the labyrinth that we would navigate over the next few years.
Weeks after my mother discovered there was something wrong with my body — specifically my digestive system — doctors decided I had chronic ulcerative colitis, a form of inflammatory bowel disease (IBD) that impacts a roughly 104,000 Canadians, according to the Crohn’s and Colitis Foundation of Canada (CCFC).
Both crohn’s disease and ulcerative colitis are members of the IBD family, with crohn’s disease impacting a total of 139,000 Canadians.
The CCFC says that an estimated 5,900 children in Canada have IBD.
Photo by Brett LuftUlcerative colitis is a chronic disease that causes ulcers and inflammation in the large intestine.
The easiest way to describe it is to imagine having a canker sore in your mouth, and then picturing dozens or hundreds of canker sores lining the inside of your intestine.
There are various degrees of ulcerative colitis, and there are different ways to treat the disease.
Ulcerative colitis is commonly controlled by medication, but some patients have a more aggressive form of the illness that refuses to respond to medication.
Common symptoms of ulcerative colitis are bloody stools, cramping and increased bowel movements.
Other complications could exist, such as dehydration, arthritis and liver disease — not to mention issues surrounding the overall quality of life.
The initial battle
I first underwent tests in December 2001, extending into January 2002.
The doctors felt that my colitis was caused by food poisoning I developed over the Christmas holidays, but I believe I was sick before then.
I have memories of finding large amounts of blood in my stool as early as September 2001, and maybe a bit before.
Regardless, by the time I was diagnosed with colitis, it had already progressed into a very aggressive disease.
They tried everything to fix me, but I was living in Grande Prairie and there were limited treatments at the time.
My mother and I travelled to Edmonton at least once a month to the Stollery Children’s Hospital at the University of Alberta Hospital.
Once there, a team of gastrointestinal (GI) specialists attempted to find a treatment that worked.
“I remember the first time that we were going to go to Edmonton,” my mother Gloria recalled.
Dr. Renfree, family’s doctor at the time, suggested we visit the local pediatrician. “But he said there was nothing they could do, and he wanted us to go straight to the University of Alberta hospital.”
After piling the family into a tiny 1991 Lumina, we drove to Edmonton and I began the procedure for my very first colonoscopy, she says. Treatments began shortly after.
However, not all treatment seems to work, and one-quarter to one-third of patients with colitis will reach a point where they cannot control the disease.
After two years of fighting, the team at Stollery had run out of options.
I remember sitting in the emergency room at the University of Alberta Hospital, 12-years-old, waiting to head up to the fourth floor to start another batch of treatments, when one of my GI specialists made me an offer.
At this point, the doctor reminded my family of one of the major complications that a percentage of patients dealing with colitis have to face.
There’s a chance the disease could develop into colon cancer.
There is no cure for colitis, as it is a chronic disease, but there is a last resort option that doctors use to help the patient.
The doctor said that it was possible to remove colitis by removing my large intestine.
The process would start with colostomy surgery and finish with colectomy surgery.
A colostomy surgery takes the end of the small intestine and converts it into a stoma, which passes waste into a small bag outside of the body.
A colectomy uses a portion of the small intestine to create a makeshift large intestine — called an ileo-anal pouch — which collects and passes waste in a somewhat normal fashion.
My family and I opted to do the surgery, as the doctor feared that I would develop colon cancer sooner than later.
The procedure started a few months later.
The colostomy surgery was an eight-hour procedure that took place Jan. 6, 2004, followed by a three-week stay in the hospital.
I recovered over the next few months and had the colectomy finalized shortly before I turned 13.
Then and now
When people learn what happened to me, they often ask how it is possible to live without a large intestine.
Produced by Brett Luft. The truth is that it’s easier once I realized that I am not alone, that there are 25,000 to 40,000 Canadians living with the same condition that I have.
What I live with is also better than the alternative, I tell them. If I hadn’t opted for the surgery, there’s a good chance that I wouldn’t be here today.
After my surgery, my doctor told me that if I would have waited even a couple of months, there was a good chance that the disease would’ve developed into colon cancer.
My surgeon said that the last time he saw an intestine in that poor of shape, it belonged to a 70-year-old, chain-smoking alcoholic.
My body still functions the same way. The pouch in my abdomen absorbs water just like a large intestine would, and it also catches the remaining waste in the same way.
The body is a master of adaptation. The main differences I have when compared to the past is that I sometimes use the bathroom more than the average Joe, and I have to be extremely careful of what I eat.
That’s not to say I am completed cured from inflammatory bowel disease.
A lot of patients who have the surgery tend to have lingering issues with their pouch.
About three times a year, I battle an infection called pouchitis that mimics the symptoms of colitis, with the exception of the ulcers.
However, unlike colitis, pouchitis is easy to treat and within a few days I’m back at it again, and oddly enough it acts like a friendly reminder of something I’ve learned along the way.
The challenges that I faced when I was diagnosed – and the challenges I continue to face – gave me the tools needed to overcome any obstacle.
Colitis showed me that we can never change the present, but how we adapt to change can change the course of the future.