A CALL TO HOPE

If you’re reading this while still unwell — still waiting for answers, still counting toilets, still measuring your life in flares and appointments — I want you to know something important:

You’re not weak for struggling.

Ulcerative colitis has a way of quietly taking things from you. Confidence. Independence. Spontaneity. It does it slowly enough that you almost don’t notice until you’re already exhausted.

If you’re fighting medication after medication, wondering why your body won’t respond the way the leaflet says it should — that’s not a failure on your part. It’s the nature of this disease.

And if surgery has been mentioned, or is looming, or sits in the back of your mind like a threat — I understand that fear. I lived with it for years.

But surgery is not giving up.

For some of us, it’s the moment we stop sacrificing our lives to keep a diseased organ.

I won’t pretend it’s easy.

I won’t pretend it’s painless.

And I won’t pretend it fixes everything overnight.

But I can tell you this with absolute honesty:

There is life on the other side of this — even if you can’t see it yet.

And you are allowed to hope for it.

PART SEVEN – LEARNING WHO I AM NOW

Chapter 42: Recovery Isn’t a Finish Line

Leaving hospital didn’t feel like an ending.

It felt like being dropped into unfamiliar territory with a vague set of instructions and the expectation that I’d work the rest out myself.

Recovery wasn’t dramatic. It was slow, uneven, and quietly demanding.

Days blurred into routines: Empty the bag.

Clean the skin.

Rest.

Walk a little.

Repeat.

Some days felt manageable. Others felt overwhelming for no obvious reason.

Progress didn’t move in a straight line.

Chapter 43: The Body I Didn’t Recognise

Standing in front of the mirror was difficult.

Scars.

A stoma.

A body that looked like it had been through something — because it had.

I didn’t hate it, but I didn’t recognise it either.

Getting dressed took planning. Clothes that once felt normal suddenly felt awkward. I worried about the bag showing. About noises. About leaks.

Confidence didn’t return overnight.

It had to be rebuilt — slowly and deliberately.

Chapter 44: Learning Trust Again

Trusting my body again was harder than learning to use the bag.

For years, my body had betrayed me. Ignored signals. Failed without warning.

Even after surgery, I waited for something to go wrong.

A leak.

Pain.

Complications.

Every unfamiliar sensation triggered anxiety. Every minor issue felt bigger than it probably was.

Over time, nothing catastrophic happened.

And slowly, trust began to return.

Chapter 45: Mental Health in the Aftermath

Physically, I was improving.

Mentally, I was catching up.

There was grief — not just for my colon, but for the years lost to illness. The plans delayed. The energy wasted just surviving.

There was anger too. At my body. At the disease. At how much it had taken.

And there was guilt.

Guilt for feeling low when surgery had “worked”. Guilt for not feeling instantly grateful.

It took time to accept that recovery includes emotional fallout — and that it’s valid.

Chapter 46: Small Milestones Matter

I began noticing milestones that wouldn’t have meant anything before.

Leaving the house without planning toilet routes.

Going for a walk without anxiety.

Sleeping through the night.

Each one felt quietly significant.

Life wasn’t suddenly perfect — but it was wider again.

My world stopped shrinking.

Chapter 47: Talking About It

At first, I didn’t talk about my stoma.

Not properly.

I avoided details. Used vague language. Changed the subject.

But when I did open up — carefully, selectively — something unexpected happened.

People listened.

Some shared their own stories. Others admitted they’d been struggling in silence. A few said they wished they’d heard something like this sooner.

That’s when I realised the power of speaking honestly.

Not to shock.

Not to overshare.

But to connect.

Chapter 48: Finding Purpose in the Mess

The idea of “going back to normal” stopped making sense.

Normal no longer existed.

Instead, I began building something new — a life shaped by experience rather than defined by illness.

I kept studying. I kept moving forward. And slowly, I started sharing my journey more openly.

Not because I had answers.

But because I had lived it.

And I knew how lonely it could feel.

Chapter 49: The Stoma Isn’t the Story

The stoma changed my body.

It didn’t end my life.

It didn’t limit my future.

It didn’t define who I am.

It gave me freedom — even if that took time to realise.

I am not brave because I have a stoma.

I’m here because I kept going when stopping would have been easier.

Chapter 50: Still Becoming

This isn’t a neat ending.

I’m still learning. Still adjusting. Still becoming.

There are hard days. There are good days. And there are ordinary days — which I value more than anything now.

My story didn’t end with surgery.

It finally had room to continue.

PART TWO – LEARNING THE LANGUAGE

Chapter 6: Waiting With a Name

Being given a diagnosis didn’t bring relief in the way I expected.

Ulcerative colitis sounded serious — but vague. It wasn’t something people talked about openly, and it certainly wasn’t something I understood. I went home and did what most people do: I Googled it.

That was a mistake.

Pages of worst-case scenarios, words like chronic, lifelong, flare, and surgery jumped off the screen. None of it came with a clear explanation of what my life would actually look like.

So instead, I waited.

I waited for tests.

I waited for appointments.

I waited for reassurance.

In the meantime, my body continued to fall apart.

The Pentasa helped settle the worst of the bleeding, but I was still losing weight at an alarming rate. My clothes hung off me. People started commenting — not out of concern, but casually, as if weight loss was always a good thing.

It didn’t feel good.

I felt weak, drained, and permanently exhausted. Even simple tasks felt heavier than they should have.

Chapter 7: Ruling Out the Worst

The scan was arranged to rule out cancer.

By the time the day arrived, I barely recognised myself. I looked ill — properly ill — and that alone was terrifying. Walking into hospital felt different now. Less theoretical. More real.

Before the scan, I was given a large amount of contrast liquid to drink. No one really prepares you for how quickly it hits.

Within minutes, I desperately needed the toilet.

I was led into the scanning room, lay down on the table, and another plate was lowered onto my body. The machine felt tight, enclosed. A voice came through a speaker.

“If you need to stop the scan, press the emergency button.”

At that point, my main concern wasn’t panic — it was whether I’d wet myself.

The scanner roared into life, loud even with ear protection. The table moved. The machine clunked and buzzed around me. I lay still, trying to breathe through it, counting seconds and hoping it would end quickly.

When it was finally over, I rushed straight to the toilet — then another — then another.

Three days later, the phone rang.

“You’re all clear.”

I didn’t realise how much I’d been holding onto that fear until it was gone. The relief was overwhelming. Cancer was ruled out.

It felt like a win — even though nothing else had improved.

Chapter 8: Running on Empty

Despite the clear scan, I was still dangerously underweight.

Blood tests showed that my iron levels were critically low. No wonder I felt like I was running on fumes — there was barely anything left in the tank.

I was booked in for iron infusions.

Sitting there with a cannula in my arm while iron was pumped directly into my veins felt strange. Not painful — just surreal. Like my body had reached a point where it could no longer fix itself without help.

Within days, I noticed a difference.

Not a miracle recovery — but clarity. Energy. The fog lifting slightly. It was the first time in months that I felt even remotely like myself.

To help me regain weight, I was also prescribed high-calorie nutritional drinks. They tasted awful — thick, artificial, and sickly sweet — but I forced them down because I didn’t have much choice.

They worked.

Slowly, I stopped shrinking.

Chapter 9: The First Scope

Not long after, I met my consultant for the first time — the man who would become a constant presence in my life over the next several years.

He was calm, direct, and honest.

“We need to see how much of your bowel is affected,” he said.

“That means a colonoscopy.”

I already knew enough to dread that word.

He explained the procedure: a camera fed through the rectum, all the way around the colon to the appendix. I nodded as if I was fine with it, but inside I felt sick.

Then he handed me a box.

Picolax.

If you’ve never had bowel prep, it’s hard to explain just how grim it is. It’s not just drinking something unpleasant — it’s surrendering control completely.

The taste was vile. Chemical. Unforgettable. Even now, years later, the smell alone is enough to turn my stomach.

Once it starts working, there’s no pause button. I was emptied out completely, over and over again, until there was nothing left.

By the time the procedure day arrived, I was starving, dehydrated, and anxious.

Chapter 10: Mild

The procedure room was filled with screens and equipment. I was given a gown and told to lie on my side, dignity officially gone.

Sedation was administered, and a heavy, drunken feeling washed over me. The world blurred. The ceiling faded.

When I came round, I knew immediately that it hadn’t been pleasant — even if I couldn’t remember most of it.

In recovery, I was given tea and toast and left to wait for the results.

The consultant came over.

“At the moment, you have mild ulcerative colitis,” he said.

“It’s confined to the rectum — proctitis.”

Mild.

It sounded reassuring. Comforting, even.

He explained that ulcerative colitis was an autoimmune disease — my immune system was mistakenly attacking my own bowel. There was no cure, but it could be managed with medication.

“We’ll try different treatments until we find what works for you,” he said.

“But every drug comes with risks.”

At that moment, the risks didn’t matter.

All I heard was manageable.

I walked out believing the worst was behind me.

PART ONE – BEFORE I LISTENED

Chapter 1: It Wasn’t Haemorrhoids

My story didn’t start with a dramatic collapse or a blue-light ambulance ride.

It started with something far less urgent — and far easier to ignore.

In 2013, when I was 26, I began noticing changes when I went to the toilet. At first, it was constipation. Then white streaks on my stool. I didn’t know it at the time, but that white substance was mucus — something your colon produces when it’s inflamed and trying to protect itself.

Back then, I didn’t Google symptoms or push for answers. I did what a lot of men do: I noticed it, decided it was probably nothing, and carried on.

Looking back, that was my first mistake.

Talking about poo is still strangely taboo. We all do it every day, yet the moment something changes, embarrassment kicks in. I was a young bloke, working, raising a family, busy with life. Whatever was going on down there didn’t feel important enough to stop everything else.

So I ignored it.

Life carried on. I had a partner I loved, and between us we were raising four children full-time. We’d also just welcomed a daughter together, bringing our total to five. I was working at Waitrose, which had recently replaced the old Co-op in town, and on the surface everything looked fine.

But my body was quietly disagreeing.

Chapter 2: Hoping It Would Go Away

The symptoms didn’t disappear.

They escalated.

The mucus became more frequent, and then blood appeared. Bright red. Impossible to ignore — yet I still tried. I convinced myself it must be something simple. Something explainable. A reaction to food. A dodgy takeaway. A spicy meat feast pizza became the convenient villain.

Deep down, I knew better.

My partner noticed before I admitted it. She saw the weight dropping off me. Saw how often I was disappearing to the toilet. Eventually, she pushed me to see the GP.

I didn’t want to go.

There’s something uniquely uncomfortable about explaining bowel symptoms out loud, especially when you’re not even sure how to describe them yourself. But I went.

The verdict was quick.

“Sounds like piles.”

I walked out of the surgery holding a prescription for Anusol, feeling a strange mix of relief and disbelief. Haemorrhoids weren’t serious. They weren’t life-changing. They were something people joked about.

So I accepted it.

I applied the cream, endured the indignity of it, and waited for things to improve.

They didn’t.

If anything, they got worse.

Chapter 3: When Something Felt Wrong

A week passed. Then another.

Nothing changed — except my anxiety.

I went back to the GP, this time more determined. Something wasn’t right, and I needed someone to take it seriously. I was referred to gastroenterology, but like most NHS referrals, it came with a wait.

While I waited, my condition deteriorated quickly.

I reached a point where I couldn’t even pass wind without mucus being released. I was losing weight without trying. My energy drained away, and food seemed to pass straight through me.

That’s when the thought I’d been avoiding finally surfaced.

Cancer.

Once that word enters your head, it doesn’t leave quietly. It sits there, replaying itself during long nights and silent moments. Every symptom suddenly feels heavier.

By the time my hospital appointment came through, I was already braced for bad news.

Chapter 4: Level 8

My partner and I arrived at the hospital and made our way up to Level 8. We took the stairs — not out of fitness, but because she hates lifts. At the time, it felt like a pointless detail. Later, it would become one of those memories that sticks.

We checked in and waited.

Eventually, a nurse called us into a small consultation room. I explained everything — properly this time. No minimising. No embarrassment. Just the facts.

She listened carefully, then said the sentence that made my stomach drop.

“We need to make sure this isn’t cancer. We can’t rule that out yet.”

I barely had time to process that before she continued.

“I need to examine you.”

She drew a curtain and reached for a long, cold, metallic instrument — something that looked more like a transformer than a medical device. In that moment, it became painfully clear that this appointment was about to cross several personal boundaries.

I was mortified.

But there was no alternative.

The examination was brief, uncomfortable, and unforgettable — the first of many moments where dignity became secondary to answers.

When it was over, she was clear.

“There are no haemorrhoids. What you’re describing is consistent with ulcerative colitis.”

I finally had a name.

But I had no idea what it meant.

Chapter 5: A Name, Not a Solution

Ulcerative colitis.

She explained that it was a form of inflammatory bowel disease — an autoimmune condition where the body attacks its own colon. She also explained that more tests were needed to confirm the diagnosis and rule out cancer.

At that point, I didn’t care about the details.

I just wanted reassurance that I wasn’t dying.

I was prescribed Pentasa (mesalazine) suppositories and sent home to wait for further tests. The medication worked, at least partially. The bleeding eased. The mucus reduced.

But the weight didn’t come back.

And the fear didn’t leave.