The Decade the World Passed Me By

Living With Ulcerative Colitis, Crohn’s Disease and an Ostomy

A Personal Essay

Patrick Belton  

Introduction

There is a difference between being alive and actually living.

For many years, I existed somewhere between the two.

I was diagnosed with ulcerative colitis when I was twenty-one years old after being symptomatically sick with the disease since the age of 19. At that age, you expect your life to be opening in front of you. You think about careers, relationships, friendships, travel, ambition and all the experiences that are supposed to define adulthood. You do not imagine that your life will eventually revolve around bathrooms, hospitals, medications, surgeries and whether your body will allow you to leave the house.

Years later, my diagnosis was changed to Crohn’s disease. By then, however, the name of the disease almost seemed secondary. Whatever we called it, it had already begun dismantling the life I knew.

People understandably associate inflammatory bowel disease with the digestive system. They think about stomach pain, diarrhea and needing to use the bathroom frequently. Those things are certainly part of it, but they barely begin to describe what severe Crohn’s disease and ulcerative colitis can do to a human life.

Disease does not remain politely confined inside your intestines.

It follows you to work. It follows you into relationships. It follows you into restaurants, cars, airplanes and social gatherings. It follows you into your finances. It follows you into your confidence and identity.

Eventually, it can determine whether you participate in society at all.

For me, there came a period when my world became extraordinarily small. I became, in effect, a shut-in for almost a decade of my life.

That sentence is difficult to write because ten years sounds almost impossible when reduced to a few words. Ten years is not simply a period on a calendar. It is thousands of mornings and evenings. Birthdays. Christmases. Summers. Invitations. Careers progressing. Friends marrying. Children growing up. People travelling, changing jobs, buying homes and moving forward with their lives.

Meanwhile, my life increasingly revolved around surviving another day.

3:30 in the Morning — February 2009

There was a night in 2009 that changed the way I understood life and death.

It happened in February, only about eleven days after I had been discharged from the hospital following major abdominal surgery—my second surgery in approximately seven months.

This had not been a minor operation.

My large intestine had been removed. Approximately half of my small intestine had been removed. My J-pouch had been constructed and a stoma created.

My body had been through enormous surgical trauma.

Yet I was home.

I had survived the operation. I had survived the hospital stay. I had been discharged.

I thought I was recovering.

Then, in the middle of the night, at approximately two o'clock in the morning, I woke up with severe chest pain.

There was pain in my arm.

I could not breathe properly.

I had profound shortness of breath.

Something was terribly wrong.

There are moments when your body communicates danger with such clarity that there is no debate about what you should do.

This was one of those moments.

I called a taxi.

That detail seems almost strange to me when I think about it now.

I didn't call an ambulance.

I called a taxi and went straight back to the hospital that had discharged me only days earlier.

I was about to discover that I was in one of the most dangerous situations of my life.

My Lungs Were Full of Blood Clots

The doctors discovered blood clots in my right leg.

But the greater danger was in my chest.

Both of my lungs were filled with dangerous blood clots.

I had pulmonary emboli.

Only days after surviving major abdominal surgery, my life was now threatened by another medical emergency.

A heart surgeon happened to be on duty that night.

He came to see me in the emergency department.

There are conversations you remember because of what was said.

And there are conversations you remember because they divide your life into a before and an after.

This was one of those conversations.

He explained how serious the situation was.

I was hour to hour.

Not week to week.

Not day to day.

Hour to hour.

Whether I would live or die was uncertain.

They began pumping my body full of blood thinners.

Then there was nothing left for me to do.

The medicine would either work quickly enough or it wouldn't.

My body would either survive what was happening inside my lungs or it wouldn't.

We were going to find out.

“You May Not Make It Out of Here Alive”

The surgeon did not soften what he needed to tell me.

He looked at me and said, in effect:

“Look, Paddy, you may not make it out of here alive.”

He told me that I was in a very, very dangerous situation.

Then he told me something no person expects to hear.

If there was anyone I needed to call and say goodbye to, I should do it now.

If I had any critical personal affairs that needed attention, I should deal with them immediately.

He told me that he would come back to see me in approximately twenty-four hours.

If I was still alive when he returned, he believed I would probably be all right.

Twenty-four hours.

That became the horizon of my life.

Make it until tomorrow.

That was the objective.

There were no plans beyond that.

No next month.

No next year.

No future vacation.

No career plans.

No thoughts about what I might be doing five years from now.

Just tomorrow.

Survive until the surgeon walks back through that door.

Who Do You Call to Say Goodbye?

It was approximately 3:30 in the morning.

I had just been told that I might die.

I had also been given an opportunity that many people never receive: the opportunity to say goodbye.

I could call my family.

I could call friends.

I could call my daughter.

I could wake someone up and say the words none of us ever want to say.

I might not make it.

I love you.

Goodbye.

I thought about it.

And then I didn't call anyone.

It was 3:30 in the morning.

I didn't want to wake anybody.

That may sound irrational. I had just been told that I might have only hours left to live, and I was worried about disturbing people in the middle of the night.

But I could not bring myself to make those calls.

What was I supposed to say?

How do you telephone someone in the darkness and tell them that by morning you may be dead?

How do you call your child and place that fear into her world?

How do you say goodbye when some part of you is still desperately hoping that it isn't goodbye?

So I left the telephone alone.

Nobody came rushing through the hospital doors.

Nobody sat beside me holding my hand.

There were no dramatic final conversations.

There was no gathering of family around the bed.

I lay there silently.

Alone.

Waiting for Morning

Hospitals are strange places in the middle of the night.

The world outside is sleeping.

Hallways become quieter.

Lights are dimmed.

There are still machines, footsteps, nurses and the sounds of other patients, but time feels different.

And somewhere inside my chest, blood clots were threatening my life.

I could not see them.

I could not fight them.

I could not reach inside my body and remove them.

The doctors had given me blood thinners.

Now we waited.

So I prayed.

I prayed for hours.

There was nothing else I could do.

I had spent so much of my life trying to control things—work, responsibilities, plans, relationships, the ordinary direction of a life.

But there, in that hospital bed, control had disappeared.

My survival depended on medicine, my body and whatever force in this universe determines whether another heartbeat follows the one before it.

I prayed.

And waited.

Another hour passed.

I was still alive.

Then another.

Still alive.

Morning eventually came.

I was still there.

Twenty-Four Hours

The surgeon had told me he would return in twenty-four hours.

That created a strange measurement of time.

Every hour survived was one hour closer.

There are times in life when twenty-four hours disappears without us even noticing it.

We wake up.

We work.

We eat.

We answer messages.

We complain about traffic.

We watch television.

We go to sleep.

Another day gone.

But when somebody tells you that surviving the next twenty-four hours may determine whether you have a future, every hour carries a different weight.

Time becomes physical.

Precious.

You become aware that life is happening right now—not tomorrow, not when things improve, not when you finally have enough money or enough time or the perfect circumstances.

Right now.

Eventually, the twenty-four hours passed.

The surgeon returned.

And I was still alive.

I had made it.

The blood thinners were doing their job.

My body had survived.

The immediate danger began to recede.

I was going to recover.

But Something Had Changed

I survived that night.

But you do not simply walk away psychologically unchanged after a doctor tells you to call the people you love and say goodbye.

Something stays behind.

Part of you remembers the hospital room.

Part of you remembers 3:30 in the morning.

Part of you remembers looking at a telephone and deciding whether to tell your daughter that her father might be dying.

Part of you remembers choosing silence.

And part of you remembers lying there alone, praying to survive until morning.

That night became one of several occasions when disease forced me to confront mortality long before I was ready.

Only months later, I would take my seven-year-old daughter to Florida because once again I believed there was a genuine possibility that I might die.

That trip would be about creating a memory for her.

But perhaps some of the urgency behind that decision had already been created in this hospital room.

Because by then death was no longer an abstract possibility to me.

I had already met it at 3:30 in the morning.

I had already been told to say goodbye.

And I had already spent a night wondering whether I would ever see another morning.

I did.

And perhaps that is one of the reasons that, all these years later, I have such difficulty accepting the idea of wasting whatever time remains.

Once you have measured your future in hours, you never look at years quite the same way again.

One Last Happy Memory — Florida, June 2009

Some of the most important memories I have of living with this disease involve my daughter.

One of them occurred in late June 2009.

My daughter was seven years old. The school year was almost finished, and I decided to take her out of school a few days early so that we could travel together to Florida.

On paper, it sounded like the kind of trip a father dreams about taking with his little girl. I wanted to take her to Disney World. I wanted her to see palm trees for the first time. I wanted to take her to SeaWorld. Most of all, I wanted us to swim with dolphins together.

But there was another reason for the trip that my seven-year-old daughter could not possibly have understood.

I thought I might be dying.

During the previous eleven months, I had already been taken into the operating room three times. My body had been through an extraordinary amount of trauma. I was extremely weak. I was still severely ill with Crohn’s disease. My bowels and J-pouch were not functioning properly.

My surgeon and I were both deeply concerned about what lay ahead. There was a real possibility that I might not survive the summer. Not the year. The summer. I was confronting the possibility that my life might be measured in weeks.

When death becomes something you genuinely believe may be approaching, ordinary decisions take on entirely different meanings. I wasn't thinking about where I might travel the following year. I wasn't making long-term plans. I was thinking about my daughter.

What would she remember about me? What memories would a seven-year-old girl carry of her father if he disappeared from her life that summer?

I could not control whether I was going to survive. But perhaps I could still give her one memory. One final, lasting, happy memory of her father.

I wanted her to remember us doing something joyful together rather than remembering only hospitals, sickness, surgeries and a father whose body was gradually failing.

So I went to my surgeon. This was not a trip I could simply book. My medical condition was too unstable. My surgeon and I needed to decide whether there was even a small window in which taking my daughter to Florida was medically possible.

I explained why it mattered so much to me. I told him that I wanted my daughter to have one last wonderful memory of the two of us together in case I died later that summer.

He understood. We discussed the risks. Eventually, we agreed that there appeared to be a very narrow window—perhaps seven to ten days—when I might be stable enough to attempt it.

That was all I needed.

I booked the trip.

My daughter and I were going to Florida. I wanted to give her Disney World. I wanted to give her palm trees. I wanted to give her dolphins. I wanted to give her something beautiful to remember me by.

We Almost Never Left the Airport

The reality of my condition revealed itself almost immediately.

My daughter and I arrived at our home airport to begin the trip. We walked through the airport doors, and I began violently vomiting bile.

Loads of it.

My body seemed to erupt almost the moment we entered the terminal. I vomited and vomited. There was almost nothing inside me to bring up except bile, but my body continued trying.

It was brutal. It was frightening. And standing there with me was my seven-year-old daughter.

For approximately an hour, I struggled with whether we were even going to make it onto the airplane. The trip I had planned because I feared I might soon die appeared to be ending before it had even begun.

Eventually, the vomiting subsided.

I had a decision to make: turn around and go home, or get on the airplane.

I knew how sick I was. I also knew why I had planned this trip.

So we boarded. We flew to Florida.

Florida

When we arrived, the heat hit me. The temperature was around 115 degrees Fahrenheit, with crushing humidity.

For a healthy tourist, Florida heat can be exhausting. For me, in the condition I was in, it was devastating.

My body was already profoundly weakened by disease and repeated surgery. My digestive system was barely functioning. Maintaining hydration was difficult even under normal circumstances. Now I had brought that body into extreme heat and humidity.

The heat seemed to drain whatever little strength remained in me.

Then another problem became impossible to ignore.

I could not eat.

I tried. My body simply would not allow it. I would put food in my mouth and try to swallow, but I could not make myself eat. It was as though my body had shut down another basic function.

So I focused on fluids. Drink. Try to stay hydrated. Keep going. Do what I could. And somehow still try to be Dad.

That last part mattered enormously. Because my daughter did not need a medical explanation of what was happening inside me. She was seven years old. She was in Florida with her father. She was supposed to be having an adventure.

So I tried to give her one.

We went to Disney World, but we could manage only a few hours at a time. My body simply did not have the strength for more. While other families spent entire days moving through the park, we would eventually have to return to the hotel because I could not continue. I spent much of the trip there trying to recover enough strength to take her out again.

It wasn't the vacation I had imagined. But there were moments that mattered.

My daughter saw her first palm trees.

And we swam with dolphins together.

Of everything that happened during that trip, that is one of the memories I hold onto most strongly.

We actually did it.

My seven-year-old daughter and I got into the water and swam with dolphins.

I had travelled to Florida thinking that this might become one of her final memories of me. I did not know whether I would see another Christmas. I did not know whether I would see her next birthday. I did not know whether I would watch her become a teenager or an adult.

But for that moment, we were together.

Father and daughter. In the water. Swimming with dolphins.

Disease had taken enormous amounts from me, but it had not taken that moment.

Getting Her Home

By the time we flew back to Canada, my condition had deteriorated badly. I was extraordinarily weak. I was vomiting bile again.

But now I faced another problem. I was afraid the airline might realize how sick I was and refuse to allow me to fly.

I needed to get my daughter home.

So I tried to hide the severity of my condition from the airline staff. I kept vomiting bile while trying to appear functional enough to travel.

There is something almost surreal about remembering that now. I was severely ill, unable to eat, repeatedly vomiting and physically collapsing, yet I was trying to conceal those very symptoms because I needed to get my seven-year-old daughter safely back to Canada.

I was her father. Whatever was happening to me, I still had to get her home.

We boarded the plane. Somehow, we made it back.

Then came the walk off the aircraft.

I remember how brutally weak I was. Walking should be one of the simplest things a human body does. At that moment, it required everything I had.

Every step was an act of will.

My daughter was beside me. I had to keep moving.

One foot. Then another. Keep walking. Get her through the airport. Get her home. Just keep going.

When my daughter's mother saw me, the expression on her face changed. Her face went ashen.

“You need to get to the hospital straight away.”

I knew.

I told her so.

I knew.

I Did Not Come Home

I went to the hospital.

And I did not leave for several weeks.

The Florida trip was over. The palm trees were behind us. Disney World was behind us. The dolphins were behind us.

Now there were hospital walls again. Doctors. Tests. Uncertainty. My body was failing.

Eventually, another surgery became necessary toward the end of July.

I was frightened. Not simply nervous about surgery. I genuinely believed I might not survive it.

There was another terrifying uncertainty: we did not know whether the surgeons would even find something inside me that could be surgically corrected.

Imagine going into an operating room knowing that your body is failing but not knowing whether the people operating on you will find anything they can actually fix.

What if they opened me and there was no answer? What if there was nothing left to do?

My surgeon was worried too.

I believed this might be the end.

I had taken my daughter to Florida because I thought I might die that summer. Now, only weeks later, I was preparing for another operation wondering whether I would wake up from it.

There are moments when mortality is philosophical.

This wasn't one of them.

Death felt close. Very close.

But somehow, I survived.

During surgery, my ileostomy and stoma were re-established. And then something remarkable happened.

My body began to settle down. My bowels began functioning again. The crisis slowly started to ease.

I did not suddenly become healthy. There was no miraculous recovery where I walked out of the hospital and returned immediately to a normal life.

Recovery took time. A great deal of time.

Over approximately the next two years, I gradually rebuilt my strength.

Slowly. Day by day. Meal by meal. Step by step.

The body I thought might not survive the summer of 2009 kept going.

The Memory I Thought I Was Leaving Behind

For years afterward, I thought about that Florida trip differently from an ordinary family vacation.

I had gone there believing I was creating a farewell.

My daughter did not know that. She was seven. To her, perhaps it was Disney World, palm trees and swimming with dolphins with her dad.

For me, every one of those experiences existed against an invisible backdrop:

Remember this.

Please remember me.

That is an extraordinary thing to carry as a parent.

I had wanted to leave my daughter with one beautiful memory because I believed that soon memories might be all she had left of me.

Instead, something happened that neither my surgeon nor I could guarantee when we discussed that narrow seven-to-ten-day window.

I came home.

I survived the hospitalization. I survived the surgery. I survived that summer.

And eventually, I survived long enough for that little seven-year-old girl to grow up.

The trip I thought might be our goodbye became something else entirely.

It became evidence of just how close I believed I was to losing everything.

And it became one of the reasons I can never think casually about time.

When you have once planned a vacation around the possibility that your child may soon need a final happy memory of you, you understand that time is not an abstract concept.

Time is your daughter beside you.

Time is a palm tree she has never seen before.

Time is a few hours at Disney World when your body can barely continue.

Time is being in the water together with dolphins.

Time is walking off an airplane when every part of your body wants to collapse and telling yourself:

Keep walking.

Get your daughter home.

One more step.

And sometimes one more step is enough.

Because somehow, after everything my body had endured, I was still here to take another one.

Montreal

There are certain experiences that explain isolation better than any medical definition ever could.

One happened while I was on vacation with my seven-year-old daughter, driving through Montreal, Quebec.

My bowels had not worked properly for approximately five days. I was backed up, uncomfortable and carrying inside me something I knew eventually had to move.

Then suddenly it did.

There was no gradual warning that gave me enough time to respond. I desperately needed a toilet, but I was driving through a major city. I had to find somewhere to pull over, find a place to park, get out of the vehicle, locate a washroom and somehow make it there before my body took over.

There simply wasn't enough time.

My bowels exploded.

There is no elegant or socially acceptable way to describe what happened, and I don't think there should be. One of the problems with the way we talk about Crohn's disease and ulcerative colitis is that we often sanitize these diseases until the people listening have no understanding of what they can actually do to another human being.

We use medical terms. We talk about urgency. We talk about incontinence. We talk about bowel dysfunction.

But those words can conceal the reality.

I completely lost control of my bowels while sitting in the driver's seat of my car.

And it didn't stop.

After approximately five days of barely functioning, my bowels began emptying themselves uncontrollably. The volume was extraordinary.

My clothes were destroyed. The driver's seat filled with feces. I tried desperately to clean myself and the car. I removed what I could from the seat. I changed my clothes.

Then my bowels released again.

I cleaned myself again. I changed again.

And it happened again.

There was nothing I could do to stop it.

This continued for what felt like an eternity—perhaps thirty minutes.

Thirty minutes can be a very long time when you have completely lost control of your own body.

There was no dignity left to preserve. There was no solution I could think my way through. I could not command my intestines to stop. I could not negotiate with my disease. I could not decide that I had suffered enough embarrassment for one day.

My body was doing what it was going to do.

All I could do was wait for it to finish.

And sitting there with me was my seven-year-old daughter.

She watched her father go through all of it.

That is the part of the memory that stays with me.

She was a little girl. There was nothing she could do to help me. And there was nothing I could do to protect her from witnessing it.

We simply had to wait together until my body finished doing what it was doing.

There is a particular helplessness in experiencing something like that in front of your child.

As a father, you want to be the person who protects your daughter. You want to be strong. You want to be capable. You want your child to look toward you when something goes wrong because Dad will know what to do.

But what was I supposed to do?

I couldn't fix this. I couldn't stop it. I couldn't even control my own body.

My daughter could only watch.

I sometimes think about what that must have looked like through the eyes of a seven-year-old child: her father repeatedly soiling himself, desperately cleaning himself, changing his clothes, trying to remove feces from the driver's seat, only to have it happen again.

There was no dramatic rescue. There was no solution. There were just the two of us inside that car waiting for my body to stop.

Eventually, it did.

But experiences like that do not necessarily end when the physical event ends.

You carry them with you.

The car can be cleaned. Clothes can be thrown away. You can shower. You can try to put the experience behind you.

But the memory remains.

And more importantly, the fear remains.

The next time you leave home, somewhere in the back of your mind is the knowledge that it could happen again.

That knowledge changes you.

When Leaving Home Becomes a Risk

A healthy person can get into a car and drive somewhere without giving serious thought to their bowels.

After an experience like Montreal, getting into a car can mean remembering exactly what happened when my body gave me no time to respond.

A traffic jam could become a threat. An unfamiliar city could become a threat. A long stretch of highway without services could become a threat. A restaurant without an easily accessible bathroom could become a threat. Standing in a line could become a threat.

Even accepting a social invitation could mean calculating whether my body would cooperate long enough for me to participate.

This is the reality behind the clinical word “urgency.”

For someone with severe bowel disease, leaving home can require a series of calculations that healthy people rarely have to make.

Where is the nearest bathroom? How long will the drive take? What happens if there is traffic? Can I eat before leaving? Should I simply not eat? Where can I stop along the way? Will the washroom be open? Will someone let me use it? What happens if my body suddenly fails me? What happens if I don't make it? Do I have extra clothes? Do I have something to clean myself with? Where can I clean myself if an accident happens?

And perhaps the most important question:

Is going out even worth the risk?

Eventually, staying home becomes easier than continually negotiating with your own body.

Home becomes the one environment you can control. You know where the bathroom is. You know where your clothes are. You know where you can shower. You know that if something catastrophic happens, at least it happens privately.

That sense of security can gradually become a prison.

Because every time you stay home, the outside world moves a little farther away.

At first, people continue inviting you. Then they begin assuming you probably cannot come. Eventually, some stop asking.

That progression is devastating.

Social isolation does not necessarily arrive dramatically. Sometimes it happens one declined invitation at a time.

You miss dinner. You cancel plans. You cannot attend an event. You disappear from work. You spend another period in hospital. You undergo another operation. You recover. You become sick again. You cancel again.

Eventually, people become accustomed to your absence.

And perhaps even more painfully, you become accustomed to being absent.

This is how disease can make someone a shut-in.

Not because that person suddenly decides that they no longer want a social life. Not because they become antisocial. Not because they stop caring about friendships. Not because they are lazy. Not because they have given up.

Sometimes isolation is learned through humiliation.

Your body teaches you that being away from home can become catastrophic in a matter of seconds.

And after enough experiences like that, staying home begins to feel safer than participating in life.

When Surgery Saves Your Life but Changes It

My disease required repeated surgeries.

Eventually my large intestine was removed. I had a J-pouch, an ostomy, attempts to reconstruct my digestive system and ultimately an ileostomy that became part of my life.

Surgery is often presented as a solution.

Sometimes it absolutely is.

Surgery can save your life.

But saving your life and restoring your life are not necessarily the same thing.

Every operation carries consequences. There is the immediate pain and recovery, but there can also be complications, weakness, weight loss, scars and the psychological impact of watching your body change repeatedly.

There were periods when I barely recognized myself.

At approximately six-foot-one, I spent years weighing between roughly 125 and 140 pounds. I had once been athletic and substantially heavier.

Disease stripped weight from my body until the person looking back from the mirror seemed to belong to somebody else.

My body had become evidence of everything I had survived.

And survival came with a price.

My ostomy eventually gave me another way to live, but adapting to life with a bag attached to my abdomen brought another enormous psychological transition.

Nobody grows up imagining an ostomy in their future.

You wake after surgery and discover that your anatomy has been permanently altered. Something that had always been private and automatic suddenly becomes visible and something that must be consciously managed.

You have to learn your body again.

You have to learn what and when to eat. You have to learn how to manage an appliance attached to your abdomen. You have to learn how to sleep with it. How to dress with it. How to travel with it. How to work with it. How to exercise with it. How to be around other people with it.

And eventually, perhaps, how to stop believing that everyone around you is looking at it.

There are leaks. There are noises. There is fear of embarrassment. There is the question of intimacy and whether another person will accept this altered body. There is the awareness that your body no longer functions like most people's bodies.

And beneath all of it is a much larger question:

Who am I now?

Losing an Identity

Chronic illness has an extraordinary ability to dismantle identity.

Before severe disease, I had ambitions. I worked. I had a social life. I interacted with people. I had expectations about where my life was going.

Then disease began making decisions for me.

It decided when I could work. It decided when I could leave home. It decided whether I could eat. It decided whether I could travel. It decided whether I had enough energy to see another person. It decided when I would be hospitalized. It decided when another operation would interrupt my life.

And sometimes it felt as though it had decided who I was allowed to become.

That loss of control may be one of the most psychologically destructive aspects of chronic disease.

People see the medical procedures. They see hospital beds. They see medications. They see surgical scars. They see the physical body.

What they do not necessarily see is the empty room after everyone has gone home.

They do not see the Friday night when everyone else is out living while you are alone. They do not see the invitation you desperately want to accept but know you cannot. They do not see friendships slowly disappearing. They do not see the financial consequences of being unable to work consistently. They do not see what prolonged isolation does to confidence. They do not see the fear involved in trying to re-enter society after years of living outside it.

And they certainly do not see the years disappearing.

When People Stop Asking

There is also an uncomfortable truth about long-term illness.

People can become tired of it.

At the beginning, people ask how you are doing. They visit. They send messages. They express concern. There is a crisis and everyone recognizes it as a crisis.

But chronic disease does not follow a convenient timetable.

Weeks become months. Months become years. The crisis that initially generated sympathy simply becomes your life.

Other people understandably continue with theirs. They have careers. Families. Vacations. Relationships. Responsibilities. Celebrations. Problems of their own.

The world keeps moving.

That does not necessarily make people cruel. But when you are the person being left behind, understanding why everyone else continues moving forward does not make the loneliness hurt any less.

I watched the world continue without me.

That may be one of the hardest things I have ever experienced.

There is grief associated with chronic illness that we rarely discuss.

You grieve the body you once had. You grieve opportunities you lost. You grieve relationships that disappeared. You grieve the career you might have built. You grieve the person you might have become. You can even grieve versions of yourself that never had the opportunity to exist.

Most painfully, you grieve time.

Money can sometimes be replaced. Careers can sometimes be rebuilt. New friendships can be formed. New experiences can be created.

But nobody can give you ten years back.

Those years are gone.

That realization can consume you if you allow it.

For a long time, I could have allowed it to destroy me.

Eventually, however, something changed.

The Morning My Intestine Came Out of My Body — April 2018

Almost a decade after the events of 2009, I would find myself back in a hospital bed confronting another terrifying complication.

It was April 2018.

I had undergone yet another surgery. My ostomy and stoma had been restored to my body once again.

Two days later, at approximately eight o'clock in the morning, I began waking up.

My eyes were still closed.

There are certain things you do instinctively after abdominal surgery, particularly when you have lived with an ostomy. You become extraordinarily aware of that part of your body.

Before I had even properly opened my eyes, I reached my hand down toward the area of my abdomen where my stoma had been restored.

I expected to feel my ostomy appliance.

Instead, I felt a massive lump.

Immediately, something felt wrong.

Very wrong.

Still trying to understand what I was touching, I moved the blankets away from my body.

Then I pulled up my hospital gown.

I looked down at my naked abdomen.

And I was horrified by what I saw.

My small intestine was coming out of my body.

Not simply the normal portion of intestine forming the stoma.

My intestine was moving outward through the opening in my abdomen.

More and more of it was emerging.

I watched it happening.

It looked almost like a snake moving out of my body.

The intestine continued pushing outward, rapidly extending farther and farther across my abdomen.

There was so much of it that it was forcing my ostomy appliance away from my body.

The bag could not contain what was happening.

My intestine was literally shoving the ostomy bag off my abdomen as more bowel continued to emerge.

By that point, approximately two feet of my small intestine appeared to be outside my body.

For a moment, I could barely comprehend what I was looking at.

This was supposed to be inside me.

Now it was lying outside my abdomen.

I was horrified.

I was scared.

I was afraid.

I was freaking out.

There are sights the human mind simply isn't prepared to see, and watching your own intestine moving out of your body is one of them.

This wasn't something happening to somebody else.

It wasn't an image in a medical textbook.

It wasn't a photograph.

It was my body.

My intestine.

My abdomen.

And I was awake, watching it happen.

“I Need a Nurse”

I called for the nurse.

Very quickly, the atmosphere in the room changed.

One moment I was alone in my hospital bed staring down at approximately two feet of my own intestine outside my body.

Then suddenly healthcare workers began appearing around me.

More people arrived.

A crowd formed around the bed.

Everyone understood that something was seriously wrong.

They began trying to get my intestine back inside my body.

There is no delicate way to describe what that felt like.

They were physically trying to push my bowel back through the opening in my abdomen.

It was extremely painful.

The pain was intense.

The situation itself was almost impossible to process.

I could see what they were doing.

I could feel what they were doing.

And I knew exactly what they were trying to put back inside me.

My own intestine.

I had endured surgeries before.

I understood pain.

I understood hospitals.

I understood complications.

But nothing prepares you for lying awake while a group of healthcare professionals surrounds your bed and tries to push your intestine back inside your abdomen.

It was extreme.

It was frightening.

It was painful.

And it was happening to me while I was fully conscious.

Again, I Was Alone

And once again, I was alone.

That detail matters.

People often imagine serious medical events as scenes in which family gathers around the patient.

Someone holds your hand.

Someone tells you everything is going to be okay.

Someone is standing beside you when you are frightened.

That was not my reality during many of the worst moments of my illness.

In February 2009, I had lain alone in a hospital bed after being told that blood clots filling both of my lungs might kill me before the next day.

Now, almost a decade later, I was again in a hospital bed, surrounded by medical professionals but personally alone, watching part of my digestive system sitting outside my body.

There was nobody beside me who loved me.

Nobody holding my hand.

Nobody I could look at and say, “I'm scared.”

Nobody to absorb even a fraction of the fear.

There were healthcare professionals doing what they needed to do medically.

But emotionally, I was alone inside the experience.

And that is a particular kind of loneliness.

You can be surrounded by ten people and still be completely alone.

When Your Body Stops Feeling Safe

There is another consequence of repeated medical trauma that is difficult to explain.

Eventually, you can stop trusting your own body.

Most people move through life assuming that the important parts of their anatomy will remain where they belong.

They do not wake up and check whether their intestine is still inside their abdomen.

They don't need to.

I did.

And on that morning, something that should have been impossible in an ordinary life was happening directly in front of me.

My intestine was outside my body.

Experiences like that change your relationship with yourself.

Your body no longer necessarily feels like a safe place to live.

You begin to understand that something catastrophic can happen without warning.

You can go to sleep recovering from surgery and wake up to discover another emergency.

You can survive one operation only to experience another complication.

You can solve one medical problem only for another one to appear.

There is no finish line.

That uncertainty becomes exhausting.

What Repeated Trauma Does to a Person

By 2018, I had already spent years accumulating experiences that most people would consider extraordinary if they happened once.

For me, they had become chapters of the same life.

Surgeries.

Hospitalizations.

Bowel failure.

Ostomies.

Reversals.

Complications.

Pain.

Isolation.

Fear.

And repeated confrontations with the possibility that my body might fail me again.

People sometimes talk about resilience as though it means becoming unaffected by hardship.

That has never been my experience.

Surviving something does not mean it didn't hurt you.

Getting through a traumatic experience does not mean you simply leave it behind.

Sometimes you survive physically while carrying the experience psychologically for years afterward.

I survived that morning in April 2018.

But I can still remember reaching down with my eyes closed.

I can remember feeling that lump.

I can remember moving the blankets.

I can remember lifting the gown.

I can remember looking down.

I can remember seeing my intestine moving out of me like a snake.

I can remember the ostomy appliance being pushed away from my abdomen.

I can remember calling for help.

I can remember the people suddenly surrounding my bed.

I can remember the pain as they tried to put my intestine back where it belonged.

And I remember being alone.

Those memories become part of you.

They accumulate.

Eventually, the story of chronic disease is no longer simply a story about an intestine.

It becomes a story about what happens to a human being after years of repeatedly being frightened, hurt, operated on, isolated and forced to adapt.

And Still, I Survived

There is a strange contradiction running through my medical history.

My body has betrayed me repeatedly.

And yet that same body has also demonstrated an extraordinary determination to survive.

The body whose intestine came out through my abdomen that morning is the same body I live in today.

The scars remain.

The stoma remains.

The memories remain.

But so do I.

That distinction matters to me.

Because survival is not always heroic.

Sometimes survival looks nothing like the inspirational stories people want it to be.

Sometimes survival is lying naked in a hospital bed, terrified, while people try to push your intestine back inside you.

Sometimes survival is crying.

Sometimes it is fear.

Sometimes it is humiliation.

Sometimes it is simply enduring something because you have no other choice.

And sometimes courage is not feeling fearless.

Sometimes courage is being absolutely terrified and still being there when the next morning arrives.

I was still there.

Again.

The Man in the Mirror — April 2018

There was another morning in April 2018 when I woke up in that hospital and knew immediately that something was wrong.

It was early, approximately 5:30 in the morning.

I was still recovering from surgery. My body was profoundly weak. I had entered surgery already severely depleted, and in the days afterward I weighed only 107 pounds.

At six-foot-one, 107 pounds is almost impossible for me to comprehend now.

There was so little of me left.

My body had been through surgery. My ostomy and stoma had been restored. I was trying to recover from everything that had happened.

Then I woke up with terrible pain in my head.

It hurt badly.

At first, lying there in the early-morning darkness of the hospital room, I tried to understand what I was feeling.

Something about my head seemed wrong.

I reached up and touched it.

It felt large.

Swollen.

When I pulled my hand away, there was blood on it.

Not a huge amount, but enough.

Enough to tell me that something was happening.

I needed to see myself.

The washroom was only a short distance from my hospital bed, but in the condition I was in, even that distance was enormous.

I struggled to get out of bed.

Standing required effort.

Walking required effort.

Everything required effort.

I was days removed from major surgery, severely weakened and weighing 107 pounds. My body had almost nothing left to give.

But I needed to reach the mirror.

So I forced myself upright.

I moved toward the washroom.

Every step required willpower.

Eventually, I made it inside.

Then I looked into the mirror.

And I was absolutely horrified.

I Did Not Recognize Myself

For a moment, I could not understand the person looking back at me.

My head was massively swollen.

It looked almost like a basketball.

There were cuts.

There were scrapes.

There was blood.

My head and face had changed so dramatically that I could barely recognize myself.

I stared into the mirror in disbelief.

That was me.

Except it didn't look like me.

There is something deeply frightening about looking into a mirror and being unable to recognize your own reflection.

A mirror is supposed to confirm who you are.

You look into it and see the face you have known your entire life.

On that morning, the mirror did the opposite.

It showed me a stranger.

A sick, emaciated, injured-looking man with a grotesquely swollen head.

I was already living in a body I barely recognized.

I weighed 107 pounds.

My abdomen had been operated on repeatedly.

My ostomy had been restored.

My body was covered in evidence of surgery and disease.

And now even my face—perhaps the most recognizable part of my identity—no longer looked like mine.

I panicked.

I called the nursing station.

Something was terribly wrong.

Again.

Another Doctor. Another Specialist. Another Crisis.

A doctor came to see me.

Then another level of concern developed.

A specialist was called to assess me.

Eventually, I was told what they believed was happening.

I had a serious Group A streptococcal infection associated with what is commonly called flesh-eating disease.

I was terrified.

There are certain medical words and phrases that immediately penetrate whatever psychological defences you have left.

“Flesh-eating bacteria” was one of them.

I had already gone into surgery severely weakened.

There had already been uncertainty about whether my body could withstand what it was being asked to endure.

I was down to 107 pounds.

My ostomy had been restored.

My intestine had already come out through my abdomen during the postoperative period.

And now I was being told that I had developed an aggressive bacterial infection.

How much more could one body take?

That was the question running through my mind.

How many times could something else go wrong?

How many times could I survive one crisis only to discover another one waiting behind it?

I was freaking out.

I was scared.

Not mildly worried.

Not anxious in some abstract sense.

I was genuinely frightened that I might die.

Again.

The Terror of the Next Thing

One of the psychological consequences of repeated medical trauma is that eventually you stop believing that surviving one crisis means you are safe.

For most people, recovery follows a certain logic.

Something happens.

You receive treatment.

You begin recovering.

Each day takes you a little farther away from danger.

My experience had taught me something very different.

I could survive surgery and develop blood clots.

I could survive one operation and require another.

I could have an ostomy restored and wake to find my intestine emerging from my abdomen.

I could survive that and then wake another morning with my head grotesquely swollen and blood on my hand.

There was always the possibility of another thing.

Another complication.

Another diagnosis.

Another emergency.

Another doctor standing beside the bed explaining something I never imagined could happen to me.

That uncertainty changes the meaning of recovery.

You stop asking only:

Am I getting better?

You begin asking:

What is going to happen next?

107 Pounds

There is another image from that period that matters.

The number on the scale.

107 pounds.

I am approximately six-foot-one.

There had been a time when I was athletic and carried roughly sixty pounds more on my body.

Now there were only 107 pounds of me left.

Disease and surgery had stripped my body down.

My face was altered.

My abdomen was scarred.

My digestive system had been reconstructed.

My ostomy had returned.

I could barely walk from the hospital bed to the washroom.

And yet somehow I was still being asked to survive another medical crisis.

There is a point where the concept of being “strong” begins to feel almost meaningless.

I didn't feel strong.

I felt terrified.

I felt exhausted.

I felt physically destroyed.

I felt vulnerable.

I felt as though my body had reached the edge of what it could possibly tolerate.

And perhaps that is important to say.

Because when people look backward at someone who survived extraordinary circumstances, they often rewrite the experience.

They say:

You were so strong.

You were such a fighter.

You were incredibly brave.

But that isn't necessarily how survival feels while it is happening.

Sometimes you aren't thinking about bravery.

Sometimes you are simply scared.

Sometimes you are lying in a hospital bed wondering whether your body has anything left.

Sometimes you look into a mirror and don't recognize the person looking back.

Sometimes survival isn't a decision.

It is simply what happens because another minute passes and you are still breathing.

Alone Again

And once again, I was alone.

That fact keeps appearing throughout my medical history.

It was there in February 2009 when a heart surgeon told me that blood clots in both lungs might kill me and that I should call the people I loved to say goodbye.

I chose not to wake anyone.

I lay alone and prayed.

It was there when I woke after surgery in April 2018 and discovered my intestine outside my body.

And it was there again when I struggled out of bed at 5:30 in the morning, walked to the washroom and looked into a mirror at a face I could not recognize.

There was no family member standing beside me when I saw it.

No friend.

No hand on my shoulder.

No familiar voice saying:

I'm here.

I had doctors.

I had nurses.

I had specialists.

And I am grateful that healthcare professionals were there to treat what was happening medically.

But there is a difference between receiving medical care and not being alone.

Emotionally, I was alone.

Again.

That repeated experience leaves marks that do not appear on an MRI or blood test.

It changes the way you understand fear.

It changes the way you understand relationships.

It changes the way you understand vulnerability.

And perhaps most of all, it changes the way you understand yourself.

The Face Looking Back at Me

I have thought many times about that mirror.

Not simply because of what the infection had done to my head, but because that reflection represented something much larger.

For years, disease had been changing me.

It changed my digestive system.

It changed my weight.

It changed my abdomen.

It changed my relationship with food.

It changed my ability to work.

It changed my social life.

It changed my confidence.

It changed my relationships.

It changed where I could go and what I believed I could do.

It changed the way I saw my body.

And on that morning in April 2018, I looked into a mirror and literally could not recognize myself.

Perhaps that is one of the most accurate physical representations of what chronic disease can eventually do to a person's identity.

You spend so many years being operated on, hospitalized, weakened, frightened and isolated that eventually you ask:

Where did I go?

Where is the person I used to be?

Where is the healthy man?

Where is the athlete?

Where is the person who had plans?

Where is the person who walked into the world without first calculating where the nearest bathroom was?

Where is the person who trusted his own body?

Where is the person who believed there would always be another year?

I looked into that mirror and could not find him.

What the Mirror Could Not Show Me

But there was something the mirror could not show.

It could show the swelling.

It could show the blood.

It could show the cuts and scrapes.

It could show a 107-pound body ravaged by disease and surgery.

It could show the physical evidence of what was happening to me.

But it could not show the future.

It could not show the person I might still become.

It could not show the strength I would gradually rebuild.

It could not show the places my body might someday carry me.

It could not show mountains.

It could not show adventure.

It could not show the possibility that one day I would take this damaged, scarred and surgically altered body and deliberately walk toward difficult places rather than spend the rest of my life hiding from them.

At 5:30 that morning, none of that existed for me.

There was only the frightened man standing in front of the mirror.

And perhaps that is why the memory matters so much.

Because today, when I look backward at that man, I know something he could not possibly have known.

This was not the end of his story.

He did not know it.

He could not see it.

He certainly did not feel it.

But somewhere underneath the scars, underneath the fear, underneath the infection, underneath the 107-pound body and underneath everything disease had taken from him, there was still a life waiting to be rebuilt.

The man in the mirror could not see it yet.

But he was still there.

The Bag That Represented Loss Began to Represent Life

I began understanding that although I could not rewrite what happened to me, I could decide what I would do with whatever life remained in front of me.

The ostomy that once represented everything I had lost slowly began to represent something else.

Possibility.

That transformation did not happen overnight.

An ostomy did not magically erase Crohn’s disease. It did not erase surgeries. It did not erase scars. It did not erase complications. And it certainly did not erase the psychological consequences of everything I had experienced.

It did not erase Montreal. It did not erase the summer of 2009.

But it allowed me to begin moving again.

And I decided that if I was going to move, I wanted to move toward something that made me feel completely alive.

For me, that became the mountains.

Making My World Large Again

Mountains are almost the opposite of the rooms in which chronic disease once confined me.

They are enormous. Open. Unpredictable. Difficult.

They demand movement. They demand participation.

When I am climbing, my scars come with me. My Crohn’s disease comes with me. My ostomy comes with me. My history comes with me.

I do not leave any of it at the trailhead.

But neither do I allow that history to automatically determine where I am permitted to go.

That distinction changed my life.

There is something profoundly meaningful to me about moving through enormous landscapes after spending so many years living inside such a small world.

For years my disease imposed boundaries.

Stay near the bathroom. Stay near the hospital. Stay near home. Don't travel too far. Don't take the risk. Don't embarrass yourself. Don't let anyone see. Stay safe. Stay inside.

The mountains ask something entirely different of me.

They ask:

How far can you go?

Today, when I think about living with an ostomy, I no longer see only the bag.

I see survival.

I see adaptation.

I see a body that has been cut open repeatedly and nevertheless continues carrying me forward.

I see evidence that the human body and the human spirit can be altered without necessarily being defeated.

I also see responsibility.

There are people right now sitting alone in bedrooms, hospital rooms and apartments believing that their diagnosis has permanently separated them from the world.

There are people afraid to leave home because they have an ostomy. There are people embarrassed by their scars. There are people declining invitations because they are terrified of having an accident. There are parents who have experienced humiliation in front of their children. There are people who have stopped explaining why they cannot come because they are tired of explaining themselves. There are people watching friendships disappear and wondering whether anybody understands how lonely chronic disease can become.

I understand.

I have lived inside that isolation.

I know what it is like when leaving home becomes frightening. I know what it is like when your own body humiliates you. I know what it is like to have no control and simply wait for your body to finish doing whatever it has decided to do. I know what it is like to watch the world continue while your own life seems suspended.

I lost years to it.

That is why I now believe so strongly that people living with Crohn’s disease, ulcerative colitis and ostomies need more than medical treatment.

We need community. We need dignity. We need opportunities. We need understanding.

We need people willing to talk openly about the parts of chronic illness that rarely appear in medical brochures.

We need to be able to talk about accidents. About humiliation. About isolation. About sexuality. About body image. About lost careers. About broken relationships. About financial hardship. About fear. About loneliness. About grief.

And about what happens psychologically when a human being spends years feeling separated from the rest of society.

Most importantly, we need reasons to believe that life can become larger again.

I cannot recover the decade that disappeared. I cannot undo the surgeries. I cannot erase the scars. I cannot erase Montreal. I cannot erase the summer of 2009.

And I cannot become the person I would have been had Crohn’s disease and ulcerative colitis never entered my life.

Perhaps that person no longer matters.

Because I am beginning to understand that the objective is not to recreate the man I was before disease.

The objective is to discover who I can become because I survived it.

My objective now is to take the body I have—the scars, the ostomy, the damage and the history that comes with them—and find out how much life I can still live.

For years, disease made my world smaller.

At one point, it became so small that simply leaving home could feel like an expedition.

Now I climb mountains.

Perhaps that is why I am drawn to them.

Every kilometre travelled, every trail walked, every mountain climbed and every summit reached represents something larger than adventure to me.

It represents movement after years of confinement.

Participation after years of isolation.

Possibility after years of limitation.

And life after years spent merely surviving.

I cannot get those lost years back.

But I can decide what happens with the years that remain.

For years, Crohn's disease, ulcerative colitis and surgery dictated the boundaries of my world.

Now I intend to make that world as large as I possibly can.