PART FIVE – THE WAIT

Chapter 26: Deciding Without Doubt

Once surgery was on the table, everything changed.

Not in a dramatic, emotional way — but in a quiet, irreversible one. The conversations stopped being about what if and started being about when.

The plan was a subtotal colectomy with an ileostomy. Most of my colon would be removed, and my small intestine would be brought out through my abdomen to form a stoma.

It was explained clearly. Risks, benefits, long-term implications.

I listened. I nodded. I asked sensible questions.

Inside, though, the decision had already been made.

I was done fighting my own body.

Chapter 27: Going In

The admission came sooner than expected.

I packed a bag — not really knowing what you pack for something like this — and went into hospital. Familiar smells. Familiar corridors. Familiar routines.

Bloods were taken. Observations done. Names checked and double-checked.

I was in.

There’s a strange stillness that comes with hospital admission. Time slows. You wait for meals. You wait for doctors. You wait for news.

All the while, your life outside carries on without you.

Chapter 28: Home for Christmas

Then something unexpected happened.

I was sent home.

Not because surgery was cancelled — but because of timing. Christmas was approaching, and rather than keep me in hospital waiting, the decision was made to let me go home for the holidays.

It felt surreal.

One minute I was mentally preparing for surgery. The next, I was walking back into my house, knowing I’d be back soon — but not knowing exactly when.

Christmas that year was different.

I was present, but not fully there. Every laugh, every meal, every moment carried a quiet countdown in the background.

This might be my last Christmas with the body I’d always known.

Chapter 29: The Call Back

After Christmas, the call came.

I was to return for Covid testing and pre-assessment before surgery.

Back to hospital again — but this time with finality attached.

The Covid test was uncomfortable but brief. The pre-assessment was thorough. Blood tests. Heart checks. Consent forms.

A stoma nurse came to see me.

She talked me through life with a stoma — care, bags, routines. Then she took a pen and marked my abdomen where the stoma would sit.

That dot felt heavier than anything else so far.

This was no longer abstract.

Chapter 30: The Night Before

The night before surgery was the hardest part.

I lay in the hospital bed staring at the ceiling, listening to the beeps and footsteps in the corridor.

Sleep didn’t come easily.

I thought about my family. My partner. My children. I thought about the years of illness, the drugs, the hospital rooms.

I wasn’t scared of the operation itself.

I was scared of what came after.

Who would I be on the other side of this?

Chapter 31: Letting Go

In the morning, everything moved quickly.

Gown on. Bracelet checked. Final questions asked.

I was wheeled down corridors I’d walked so many times before — but never like this.

In the anaesthetic room, a mask was placed over my face. A calm voice told me to breathe.

I closed my eyes.

And handed myself over completely.

PART FOUR – WHEN THE GROUND MOVES

Chapter 19: Building Something New

Feeling well for the first time in years gave me confidence — not just physically, but mentally.

I decided to retrain as an accountant.

It wasn’t a small decision. I was working nights at Waitrose, studying during the day, and trying to build a future that didn’t revolve around illness. For the first time, my plans extended further than my next hospital appointment.

Vedolizumab continued quietly in the background, every eight weeks, almost forgotten — which, ironically, was the biggest gift it gave me.

I progressed. I learned. I passed exams.

Life felt like it was finally moving forward.

Chapter 20: Cracks in the Shield

The return of symptoms was subtle at first.

A bit more urgency.

Occasional blood.

A familiar heaviness in my gut.

I didn’t panic straight away. Four years of remission had taught me not to overreact to every bad day.

But bad days turned into bad weeks.

Blood tests showed rising inflammation. Stool samples confirmed what I already suspected.

Vedolizumab was starting to fail.

The dose was increased. The infusions were brought closer together. We tried to squeeze more life out of the drug that had already given me so much.

For a while, it held.

Then Covid hit.

Chapter 21: Covid and Collapse

Catching Covid while immunosuppressed was terrifying.

The guidance was unclear. The fear was constant. Every cough felt like a warning sign.

At the same time, my colitis flared hard.

Working in retail during a pandemic while dealing with bowel urgency felt impossible. I was exhausted, anxious, and barely holding things together.

Eventually, I lost my job.

It wasn’t dramatic. No shouting. No arguments.

Just a quiet, devastating end to something that had been my safety net for years.

Losing work stripped away more than income — it took routine, purpose, and confidence with it.

Chapter 22: Losing Control

The flare escalated rapidly.

I was going to the toilet constantly. Accidents became a real possibility — then a reality.

The first time I wore protective underwear, I cried.

Not because of the product itself — but because of what it represented. A loss of dignity. A loss of control. A line crossed that I never imagined I’d reach.

I stopped going out unless absolutely necessary. I mapped toilets. I planned routes. I declined invitations.

My world shrank again.

Mentally, I was struggling more than I wanted to admit.

Chapter 23: Back Where It Started

Eventually, there was no avoiding hospital.

Blood tests were bad. Weight dropped again. Energy disappeared.

I found myself sitting in familiar waiting rooms, hearing familiar phrases, answering the same questions.

“How many times a day?”

“Any blood?”

“Any pain?”

Yes.

Yes.

Yes.

Vedolizumab was officially stopped.

The drug that had given me four years of life was no longer an option.

Chapter 24: The Big Guns

With options running out, the conversation turned serious again.

Biologics. Stronger ones. Higher risk.

Infliximab was next.

I was admitted to hospital for loading doses. Cannulas. Drips. Monitoring. Hope balanced precariously with fear.

At first, it seemed promising.

Symptoms eased slightly. Numbers improved just enough to keep optimism alive.

But my body had other plans.

Chapter 25: When Hope Runs Out

The response didn’t last.

Blood returned. Urgency followed. Fatigue became crushing.

More tests. More discussions. More quiet looks exchanged between doctors.

I knew what was coming before anyone said it.

One afternoon, my consultant sat down and didn’t open his laptop.

That’s how I knew this was different.

“We’re running out of medical options,” he said gently.

“I think it’s time we talk seriously about surgery.”

This time, the word didn’t scare me.

It felt… inevitable.