Introduction
Introduction
PART I – Understanding IBD
That’s blood.
This isn’t good.
I remember looking into the toilet bowl and seeing it for the first time.
A quick Google search followed.
Common causes: haemorrhoids, anal fissures, diverticular disease, inflammatory bowel disease.
Serious causes: colorectal cancer.
Let’s hope it’s haemorrhoids.
That sounds a lot better than cancer.
The timing couldn’t have been worse. It was April 2023, and I was about to leave on a three-week family road trip. We had planned a 4,500-kilometre adventure along the Great Ocean Road, through the Barossa Valley and over to Kangaroo Island.
Everything was booked.
Everything was paid for.
And I had just started bleeding from my arse.
Along with the blood came a growing collection of other symptoms. Mouth ulcers. Bloodshot eyes. Abdominal pain. Loss of appetite. Frequent trips to the toilet. Mucus out the rear end. Painful boil-like sores. Aching joints. Crushing fatigue. It felt like something new was breaking every week.
By lunchtime most days I would collapse into bed and fall asleep.
One of the highlights of the trip was supposed to be seeing the seals on Kangaroo Island. I had been looking forward to it for months.
I never made it.
I was so exhausted that I spent most of my time on the island lying in a motel bed.
At one point, I remember my daughter bouncing up and down on my back, saying, “Daddy, let’s walk down to the beach.”
I eventually dragged myself out of bed and took her down there for a swim.
I’ve always found a dip in cold water gives me a bit of a boost, but the real motivation was seeing the disappointment in her face every time I said, “Maybe later.”
At the same time, I was losing weight and struggling to eat. Travelling is wonderful, but it’s surprisingly difficult to find bland food when your digestive system has declared war on you.
Meanwhile, Doctor Google was hard at work.
The more I read, the more convinced I became that haemorrhoids were unlikely.
That left two possibilities that seemed increasingly plausible.
Inflammatory bowel disease.
Or cancer.
I kept thinking how strange it was that I was now hoping for an incurable chronic disease.
But when the alternative is cancer, your standards change quickly.
I refused to read anything about colon cancer. I wasn’t ready for that rabbit hole.
Instead, I started reading about IBD.
One search result caught my attention:
For most people with Crohn’s disease or ulcerative colitis, life expectancy is considered normal or near-normal, particularly with modern treatments now available.
My logic was simple. Before getting sick, I fully expected to live longer than average. So, if people with IBD lived slightly shorter lives than average, perhaps it would all balance out and I’d end up about average.
It wasn’t exactly scientific reasoning, but it helped me sleep at night.
If I had been travelling alone, I would have abandoned the trip and gone home.
But I wasn’t alone.
I was travelling with my wife, our three children at the time, my brother, and my mother.
So, I soldiered on.
Mostly, I was looking forward to getting home and seeing my doctor.
Based on previous experiences, I already knew what was likely coming.
Referral to a gastroenterologist.
Blood tests.
A colonoscopy.
Probably a gastroscopy.
Biopsies.
Maybe a CT scan or MRI for good measure.
The glamorous world of gastrointestinal medicine.
What I didn’t know was how long it would take.
The first specialist clinic I contacted offered me an appointment in six months.
Six months.
At the time, I felt like I was dying.
So, I started calling every gastroenterology clinic I could find. I asked to be placed on cancellation lists. I told them I could attend at short notice.
Fortunately, persistence paid off.
Within ten days, I was sitting in a specialist’s waiting room.
My first piece of advice for anyone dealing with a health problem is simple:
Make your health a priority.
Advocate for yourself.
And don’t be afraid to shop around until you find someone who can help.
When my appointment finally arrived, I was nervous.
At first, I was put at ease. My gastroenterologist was a beautiful young lady with a British accent. I remember thinking I was definitely in the right place. She listened carefully while I described my symptoms.
When I mentioned the blood, she said:
“Blood is never good.”
For some reason that sentence lodged itself permanently in my brain.
Then I asked what area she specialised in.
“Liver cancer,” she replied.
Wonderful.
The two things I didn’t want to hear were:
“Blood is never good.”
And:
“I specialise in cancer.”
Needless to say, my anxiety wasn’t improving.
Thankfully, she expedited my scopes.
Within a week I was lying on a hospital bed waiting for a colonoscopy and gastroscopy.
When I woke up, she told me:
“I think you have Crohn’s disease.”
Then she added:
“We’ve taken biopsies to rule out cancer.”
Personally, I would have preferred she left that second sentence out.
I immediately thought of an episode of Seinfeld where George is waiting on a biopsy. He asks the doctor if he has cancer, and the doctor tells him, “We don’t know what it is.”
George isn’t impressed. As far as he’s concerned, the correct response is something along the lines of:
“Cancer? Are you crazy? Get outta here!”
He reckons Get outta here should be part of every doctor’s medical training.
At that moment, I couldn’t have agreed more.
That’s exactly what I wanted to hear.
Instead, for the next two weeks, it was her words that kept running through my head:
“We’ve taken biopsies to rule out cancer.”
Over and over again.
“We’ve taken biopsies to rule out cancer.”
The two-week wait felt much longer.
Eventually, the biopsy results arrived.
No cancer.
Crohn’s disease.
After years of symptoms, endless tests, and multiple specialists, I finally had an answer.
The relief was enormous.
For fifteen years I had experienced abdominal pain and bowel symptoms. Three different gastroenterologists had investigated me. Multiple scopes had shown nothing conclusive.
Now there was finally a name for what was happening.
Crohn’s disease.
Of course, relief only lasts so long.
Eventually, another thought arrives.
You don’t have a terminal illness.
But you do have a chronic autoimmune disease that currently has no cure.
That reality takes a little longer to process.
During that time, I found myself returning to the writings of Marcus Aurelius.
One quote in particular stayed with me:
“When anything tempts you to feel bitter, not ‘This is misfortune,’ but ‘To bear this worthily is good fortune.’”
Not because Crohn’s disease is a blessing.
It isn’t.
But because hardship is unavoidable. The only thing we really control is how we respond to it.
This book is not a cure.
It is not medical advice.
And it is definitely not a lecture.
It is a shelf-help guide.
A practical, honest, and occasionally ridiculous account of what it is like to live with inflammatory bowel disease.
I’ll share what worked for me, what didn’t, and the lessons I learned through trial and error, late-night Googling, conversations with doctors, and more toilet-related experiences than any person should reasonably have.
If you’ve just been diagnosed, I hope this book helps you feel less overwhelmed.
If you’ve been living with IBD for years, I hope it makes you feel less alone.
And to everyone, I hope you get a laugh along the way.
And if you’re simply curious about what life with this disease is really like.
You’re about to learn far more about bowel habits than you ever expected.
Welcome to the club nobody wants to join.
Let’s figure this shit out together.