The struggle

6-minute read time • 1,015 words

Originally published in issue 267 of Journal, the Ileostomy Association magazine.

Right now, I’m struggling.

I’m struggling with the fact that I’ve got a stoma. And I’m struggling with the fact that when the year began, I didn’t really even know what a stoma was.

Let me explain.

As I write this, I’m only a few short months into my new life as an ileostomy patient. But this story really begins a decade earlier.

During treatment for a bladder infection, I was found to have mild Crohn’s disease. For the longest time, “mild” seemed accurate, since I never needed to take any medication, change my diet, or apparently alter my lifestyle at all. A check-up once a year, and I was on my merry way.

Then, one lazy Sunday afternoon 11 years later: snap! Something twanged. Searing pain, vomiting, a breathlessness that wouldn’t go.

That this unfolded on a weekend turned out to be my saving grace. Midweek, I’d likely have tried to sleep it off, or gone to a GP practice ill-equipped to diagnose the real issue.

What had happened, of course, was that the Crohn’s disease everyone thought was untroublesome and well-controlled had been slowly rotting away my digestive system. My bowel had perforated – that was the “twang” – and I’d developed peritonitis, a life-threatening infection.

That Sunday night, the A&E clinician told me I’d need an emergency operation. The nurses drew an X in marker pen on my abdomen to show where what I’d previously only known as a “colostomy bag” would be fitted. And as my morphine mind-fog began to lift, the reality of the situation hit me like a boxer’s fist.

So, yes: I’m struggling.

I’m struggling with how I look. I was nil by mouth for my first fortnight in hospital, losing two stone in weight. And though I’m slowly creeping back towards pre-surgery size, I still feel shrunk, weakened, emasculated.

I’m struggling with the fact that I’m now, legally at least, disabled. I’m finding hardship in everything that comes with having a pouch stuck to your body 24/7:

Having to carry spares wherever I go.

How daily changes eat into my morning time.

The unsightly bump under my clothes and the mortifying noises that come from it.

Most of all, I’m struggling with the effect of all this on my nearest and dearest. Parents and mates spent hours visiting and supporting me in the hospital, but I can’t begin to imagine the sadness and shock they felt.

Worse still is the impact this episode has had on my wife.

While I was laid up in Chesterfield Royal, Francesca was at home, juggling the pressures of a recent work promotion with the chaos of caring for a four-month-old Labrador.

To cap it off, when I had that life-saving operation, her and me had been married six months to the day. Not exactly the anniversary present she might’ve hoped for.

Yet there’s one thing I’m struggling with more than anything else. And it’s this:

I’m not struggling as much as I expected.

Yes, having 24cm of gut sliced out of my body has changed me in unimaginable ways. But what I’ve really been taken aback by is that most of those changes are positive.

First and foremost, I’ve got newfound appreciation for how incredible my wife and friends and family truly are. They’ve been nothing but patient and kind to me, even in moments that must have been unbearably trying.

In terms of managing my stoma, well, that can certainly be mortifying at times. Yet so far, I’ve got to confess it isn’t as bad as I thought it would be.

The parps and burbles that come from “it” are few and far between. As for the bump beneath my T-shirt, few people even notice.

For example, the builder who’s been working on our house every day for the past month simply couldn’t believe it when I told him about my ileostomy. “I’d never ‘ave known,” he said, in his best broad Yorkshire accent.

It’s also true that my mornings look different these days. But there’s something soothing about my new routine that I might not otherwise have experienced. On top of pouch changes, I’m now using those sunrise moments to take better care of my mental health, through daily breathwork, meditation, and journaling.

And the weight loss? The great irony is that when I went into hospital, I was overweight. True, I’d slimmed down for my wedding in 2023, but I still had more to lose.

No longer. By making fitness a priority since my wounds healed, I’ve rediscovered old passions, and discovered new ones for the first time:

With the help of a sympathetic personal trainer, and inspired by stoma bodybuilders like Dan Kelly, I’ve started weightlifting.

I’m gradually working my way through the Couch to 5k running programme again, having first tried it out during the Covid lockdowns to pass the empty days.

And thanks to the Ileostomy Association, I’ve been introduced to the incomparable Sarah Russell, who’s teaching me Pilates.

But the biggest and most surprising transformation I’ve gone through since my operation isn’t mental or physical, but emotional.

When I first came round from the anaesthetic, I confessed to my wife that I thought my life as I knew it was over. I thought getting my stoma was a defining moment, something I’d look back on as my life’s greatest struggle.

In reality, as I’ve described, there have been a million more smaller struggles since that point. And tackling them has enriched my life in ways I could never have predicted.

So maybe you’re a new stoma patient like me. Perhaps you’ve had your stoma for years, or know someone who has. Or it could be that you don’t have a bowel condition at all, and are simply reading this out of curiosity.

All I can tell you is this: the one thing I’ve learned is that what matters isn’t what happens to us, but the attitude we have towards it.

Or, to put it another way: the struggle is real. But if you approach it in the right way, it can also be rewarding.