‘I want to live so badly’: He survived for years without a bite to eat

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If jumping from a plane at 13,000 feet seemed scary to Zachary Colton, it was nothing compared to what awaited him last October.

Just days after skydiving at the Arnprior airport — his fourth such jump — Colton got the call giving him less than a day’s notice for the astonishing five-organ transplant he’d been waiting on for a decade. Colton, who lives with a rare genetic condition that has virtually shut down his digestive system, was to receive a new stomach, pancreas, liver, large intestine and small intestine in one day-long operation.

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“The scariest thing I’ve ever done is being wheeled through those doors for the surgery,” said Colton, 35, in a video call from Toronto General Hospital. “That was terrifying. Getting the call and then having to keep putting one foot in front of the other.”

In a Facebook post on Oct. 25, a pale and thin Colton stands at the entrance to the Ajmera Transplant Centre at Toronto General.

“F—ing terrified,” he wrote. “But I’m here. I want to live so badly.”

A few hours later, surgeons would begin their work to give him that chance.

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Even as a child, Colton had digestive troubles. But when he was 15 and a student at Ottawa’s Glebe Collegiate, his bowels shut down completely.

“It happened overnight,” he said.

Within a few days, 13 litres of fluid had collected in his duodenum, the tube that links the stomach to his intestines.

“I looked like I was pregnant with twins,” he said. “I still have stretch marks from that. I was basically in agony until the doctors decided to do emergency surgery.”

At first, doctors thought he had a bowel obstruction, but tests and imaging found nothing. He spent months at The Ottawa Hospital and CHEO. No one could figure out what, exactly, was wrong.

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It would take years, and the effort of his parents, Carrie Colton and David Longbottom, to find an expert in Kansas, before he would be diagnosed with Hollow Visceral Myopathy. The disease affects the motility of food through the digestive tract and, in rare cases like Colton’s, stops the movement completely.

At first, Colton had a gastric tube insert to put food directly into his stomach and a permanent central line for IV feeding. When he was 19, however, a crippling stomach pain sent him back to hospital; doctors found his bowel had twisted. By the time they operated, the lower half of his bowel was essentially dead. He’s had an ostomy bag—a plastic pouch to collect his body of waste—ever since.

“I was so used to pain at that time, I thought it was just stress. I put off going to the hospital for two weeks when I should have gone right away,” he said.

Since then, his body has been in a constant, slow state of deterioration. Eventually, he couldn’t tolerate solid food at all and relied entirely on his IV tube for “total parenteral nutrition” or TPN.

Once a promising athlete and distance runner, Colton became tied to his tubes. His world got smaller and smaller.

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“I was chronically ill and pretty much dependent on my family at that time — chronic pain, chronic nausea — It was incredibly debilitating,” he said.

Before his surgery, a typical day—one he’d lived for years—involved a routine of vomiting; incessant and painful stomach cramps; the monotonous ritual of filling and refilling the IV bags that kept him alive; and cleansing the ostomy bag.

It became a full-time job to take care of all the medical things that kept him alive each day. “I lost the ability to eat any food. Eventually, I even lost the ability to drink.”

His day-to-day life, was “pretty miserable,” said Dr. Mark Cattrall, the surgeon at Toronto General who helped perform the delicate multi-visceral transplant. “I wouldn’t wish it on my worst enemy.”

There’s no cure for hollow visceral myopathy, just a deadly gamble. Doctors tried the first multi-organ transplants decades ago, but the patient died.

Colton was in his mid-20s when a now-retired doctor at Toronto’s University Health Network first told him that a multi-visceral transplant was possible. But the procedure carried enormous risk.

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“He told me, in no uncertain terms, ‘Look. If you can survive another 10 or 15 years, this is going to be a different world. The longer you can survive, the better your chances will be. If you can manage to not do this right now, I would suggest putting his off.’”

Heeding the doctor’s advice, Colton had a new mission: Stay alive.

If he could survive long enough, advancements in medical technology made the surgery a more viable option.

“The last 10, 15 years, they’ve been sort of a Groundhog Day from hell,” he said. “Those are really hard years to lose. Watching my friends, watching my peers get their education. Build their careers. Start their families.”

But the most difficult thing over the years of living with his disease, he said, was the lack of hope. “That’s what transplant provides hope for — to have a life like that.”

Unable to work or go to school, his life dragged on. He was nearly bedridden, but he pleaded with his doctors for an activity he could do.

“I asked my doctors a few years ago ‘What can I do? Can I go bungee jumping?’ And they said ‘No! No.! No! You can’t go bungee jumping.’ ‘Can I travel?’ ‘No. You can’t go travel. That’s too dangerous as well.’ So I said, ‘Can I go sky diving?’ And they said ‘Yeah. Actually, surprisingly skydiving is pretty easy on the body.’

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Parachuting became an annual event to mark another year of survival. Once, he even convinced his mother, Carrie, to jump with him.

Finally, about four years ago, Colton decided he could take no more. It was time to gamble on a transplant.

“I knew I was treading water. I knew I wasn’t going anywhere with my disease. This was my last chance,” he said.

“I think I needed five or six years before I was able to start this process. Five, six years of just hammering against life and my disease until I was sure, ‘OK. It’s worth it. I’m ready to take this chance. I’m ready to roll the dice.’”

Doctors warned him that his chance of survival was less than 50 per cent.

“I never really attached myself to when he made the decision,” said Carrie Colton. “We tried to not influence him. I’ve just done my best to stay in an acceptance, survival mode for the last 20 years. It hasn’t been easy. It’s been horrible. But we felt we would provide him with everything we could to make his life comfortable.”

But just when Colton decided to go for a transplant, the COVID-19 pandemic began. That meant there would be another three years of waiting.

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It took another year to get on the transplant list, but buoyed with hope, Colton began exercising, doing yoga and hitting the gym at the RA Centre with a personal support worker to begin building his strength. He also started to document his life to a growing audience on YouTube and TikTok.

“Exercise takes your mind off the pain,” he said. “If your body is stronger, you’re better able to handle discomfort and pain.”

The family rented an apartment in Toronto to be close to the hospital. When the call came, days after his latest parachute jump, Colton had 18 hours to prepare.

The surgery began at 9 a.m. Dr. Cattrall removed the organs from the donor, while Dr. Anand Ghanekar handled implanting them in Colton.

“The surgery, I don’t want to say it’s easy, but relatively speaking it’s not the most challenging part,” Cattrall said. “When we do a multi-visceral transplant, everything is contained as one unit. There’s only a major artery and a major vein that we have to connect. In some ways, it’s simpler than what we would do with a standard liver transplant.

“The challenge with these is getting the immunosuppression right. We have to walk a fine line between rejection on one side and infection on the other. It’s the post-op part that’s challenging.”

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A transplant like Colton’s remains rare. Only a handful are done each year in Canada and most are performed on children. Cattrall performed two last year: Colton’s and one at Toronto’s Sick Kids Hospital. One reason is that doctors have become better at managing bowel care and IV nutrition, making such a drastic surgery less necessary.

But that wasn’t an option for Colton, whose bowels had completely failed long ago. The transplant took 10 hours, but for Colton, the battle was just beginning.

His recovery was excruciating. A cocktail of 14 anti-rejection medications played havoc with his mind.

“Huge anxiety, Very powerful emotional spikes up and down,” he said. “That was terrifying. The exhaustion. The weakness. There were times I was sure I wasn’t recovering. That I was dying. That I just wasn’t getting better. But I just kept going.”

Doctors reassured him that things were going well.

“They were very very positive,” Carrie Colton said. “They said if they could have custom-ordered an organ donor, this would be it.”

Gradually he was weaned off most of the anti-rejection drugs. His new stomach, pancreas and liver began to function normally, although doctors kept him on an ostomy bag to let his intestinal tract heal longer.

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And then, for the first time in more than a decade, Colton tasted solid food — a bit of chicken and mashed potatoes

“It was hospital food, so….” he said, wryly.

“It was actually quite a struggle. Getting down my first few meals — I was heaving quite a bit. I had to force it down.”

In a symbol of his newfound optimism, Colton began posting again on social media. (“Everything’s coming up Milhouse!” he exclaimed in one, a reference to the Simpson’s animated series.)

Cattrall says Colton’s recovery has been “remarkably smooth.”

“His spirits have really changed,” said Cattrall. “He’s a different person compared to how he was when I first met him and certainly in the first two weeks after the surgery. I think he’s coming around to the fact that he’s going to get out of here and do well.”

In early February, doctors finally reattached his intestines to complete his digestive tract and for the first time in 16 years his ostomy was removed. Colton could at last begin to go to the bathroom on his own.

Although he could finally eat after years of waiting, he had no appetite for food. It would be weeks before he felt hunger again, while eyeing a hamburger his mom was eating in his hospital room.

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“I said to her, ‘I think I must be getting better. That looks pretty good.’”

What is he most looking forward to eating?

“Peaches, for one. Japanese curry. Just being able to have food again is a pleasure.”

And yet, the thought of eating is still foreign to someone who has spent years depending on an IV line for his nourishment.

“I was really scared. I still am. Whether my body will be able to extract enough energy from food as opposed to what I’ve been doing for so long.”

Last month, the final feeding tube that went through his nose was removed. On Feb. 23, after nearly four months in hospital, Colton went home.

In a confessional-type video made just before his release, he talked about his fears about what lies ahead as he “begins my life all over again.”

“Mentally, I’m geared to always expect the worst,” he says. “Truth be told, I find it hard to believe that I’m actually here.

“I am terrified of failing to live up to this momentous opportunity.”

But in a video of his first real meal outside a hospital—soup and dumplings at a restaurant with his mom —Colton seems almost giddy, pouring soy sauce and wielding chopsticks with surprising dexterity for a man who hasn’t eaten a meal in years. A few days later, he proudly displayed the meatloaf he’d prepared from his grandmother’s recipe.

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“Meatloaf chef extraordinaire!” Carrie boasted on her Facebook page.

In the weeks since his discharge on Feb. 23, Colton continues to make progress toward resuming the normal life he had been denied for so long.

“Toronto is a huge city. I’m feeling a little smaller than I was expecting,” he said. adding that he’s trying to make new friends.

“Organizing my day is something I’m finding a little bit difficult. Eating, grocery shopping, taking care of my dog. All those things I’m now having to fit in. I have to reinsert myself back into life again.

Colton will stay in Toronto for the next while as doctors monitor his progress, but plans to return to Ottawa and register at Carleton University for the fall. He hopes to study pharmacology, specializing in a subject he knows intimately — intravenous nutrition.

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