Living a full life with Crohn’s
Matthew Nester fainted when his doctor mentioned removing his large intestine. It was a solution to the bowel disease that had plagued him since he was 22. It meant walking around with a bag full of his waste, for the rest of his life.
“Like a lot of people, I thought it meant the end of life as I knew it,” the 37-year-old said. “There's a lot of stigma attached to it.
“People imagine they must be smelly and gross. Sometimes ostomy bags are the butt of jokes.”
A medical device inserted through surgery moves waste past his digestive tract and into the bag he wears 24/7. Four years later, he's a huge fan.
Mr Nester has Crohn's disease.
“Before surgery I was sometimes taking 26 pills a day,” he said. “Some of the pills were huge. Sometimes I'd have to go to the bathroom 30 times in a day.
“In the four months before my surgery I was really sick and lost 55lb.
“I was still going to work at that time, but it was hard.”
Today, he is pill- and symptom-free.
“It's the best thing that ever happened to me,” he said.
Mr Nester found out he had Crohn's two months after he married Siani Colley-Nester. He was initially told he had ulcerative colitis.
“Ulcerative colitis is just in the large intestine,” he said, “Crohn's can be anywhere in the digestive system.”
For 11 years he was treated unsuccessfully with different medications, some costing him $20,000 a year after insurance. Some were taken intravenously and would knock him out for several days.
“I would get a bit of relief every now and then, but it was never enough and it never made the symptoms go away fully,” he said.
He tried to live his life despite his symptoms. He is a trust manager at Conyers Dill & Pearman and has a passion for music.
“I'm a trained opera singer,” he said. “When you sing, your body is your instrument. So when you are sick, you are not at your best. But, I did shows with Gilbert & Sullivan and BMDS.
“I made sure I was able to live my life despite the disease, but it was extremely hard. I could not have done it without a very supportive wife and family.”
In the end, he had a total colectomy.
“When it came down to it, it was an easy decision,” he said. “Doctors removed my entire large intestine and gave me an ileostomy.
“They take the ileum, the end of the small intestine where it transitions to the large intestine [and] they cut a small hole in your abdominal wall. They pull the intestine through the abdomen and sew it to the outside of your skin. That becomes how you process waste.”
Mr Nester is now president of the Ostomy Association of Bermuda and is trying to revive it after it fell off the radar a few years ago. The association has 30 members so far.
“I don't know how many people in Bermuda have ostomy bags,” he said. “That's something I'd like to figure out when we get the association going full-steam again.
“We're holding monthly meetings. We can provide support and answer questions. I'd like to make hospital room visits. A lot of people who have ostomies are very ill and can't necessarily come to a meeting.
“It's important to talk to people when they first get one, as it's usually then that they're trying to figure out how things are going to work.”
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Crohn’s is a type of inflammatory bowel disease that can impact any part of the gastrointestinal tract.
It’s not fully known what causes it, but there is thought to be a genetic link. Scientists are working on a cure.
Surgery becomes necessary when medications can no longer control symptoms, or if the patient develops complications such as an intestinal obstruction.
Surgery does not cure it, but it can conserve portions of the gastrointestinal tract and return the patient to the best possible quality of life.
While symptoms vary from patient to patient and some may be more common than others, the telltale symptoms of Crohn’s disease are:
• persistent diarrhoea
• rectal bleeding
• urgent need to move bowels
• abdominal cramps and pain
• sensation of incomplete evacuation
• constipation, which can lead to bowel obstruction.