Living With Ulcerative Colitis: The Disease Nobody Sees, But You Plan Your Life Around
Wherever I go, there’s one thing I’m looking for before almost anything else.
The toilet.
Not the bar.
Not the restaurant.
Not the best view.
The fucking toilet.
Where is it? How far away? Is it open? And if I suddenly need it, can I get there quickly enough?
Welcome to one of the less glamorous realities of living with inflammatory bowel disease, or IBD.
More specifically, in my case, ulcerative colitis.
I’m pretty fortunate. I haven’t had a full-on flare for a while, and things are considerably better controlled than they have been in the past.
I’ve even been able to halve my medication, under the guidance of my medical team.
But that doesn’t mean the condition has disappeared.
And it certainly doesn’t mean I’ve stopped thinking about it.
Because sometimes the hardest part of living with a chronic illness isn’t what people can see.
It’s everything going on in the background.
So, What Actually Is Ulcerative Colitis?
Ulcerative colitis, or UC, is a long-term inflammatory condition affecting the large bowel.
It can cause diarrhoea, bleeding, stomach pain, urgency and fatigue.
Some people experience relatively mild symptoms, while others can become seriously unwell.
There’s currently no simple cure, but treatments can help control the condition and allow people to live full, active lives.
And despite what some wellness influencers might tell you, it isn’t something you’ve caused by eating the wrong foods or failing to look after your gut.
If only it was that fucking simple.
The First Thing I Look For Is The Loo
I can walk into somewhere I’ve never been before and almost instinctively start working out where the toilets are.
Restaurant? Where’s the loo?
Shopping centre? Where’s the loo?
Gig? Where’s the nearest one, and what’s the queue likely to be? (Always in the hope that I don’t need to use those ones)
Long journey? Where can I stop if I need to?
It’s become part of my nature.
When you’ve experienced bowel urgency, you understand there’s a very big difference between needing the toilet and NEEDING THE FUCKING TOILET.
Sometimes holding on for another ten minutes simply isn’t an option.
Even when your symptoms are well controlled, the memory of those experiences doesn’t disappear.
You plan ahead.
You check where the facilities are.
You think about how far you are from home.
Sometimes you find yourself making decisions based on toilet access before you’ve even considered whether you actually want to go somewhere.
It’s fucking tiring having to think about something most people barely give a second thought.
The Anxiety Of What Might Happen
You don’t have to be experiencing a flare to worry about having one.
You can feel absolutely fine, getting on with your day, when suddenly something doesn’t feel quite right.
Is it something I’ve eaten?
Is this the start of a flare?
Am I going to need the toilet?
And if I do, will I make it?
That uncertainty can be incredibly draining.
There’s always that little voice wondering whether your body is about to throw a spanner in the works.
Being stuck in traffic can become a worry. Going somewhere unfamiliar can feel uncomfortable. Even something as simple as heading out for a meal can involve more planning than you’d like.
Sometimes it’s not what your gut is doing right now that’s difficult.
It’s worrying about what it might do next.
The Fatigue Can Be Absolutely Fucking Brutal
Most people associate ulcerative colitis with diarrhoea, bleeding and needing the toilet.
Another side that doesn’t get talked about enough is…..
The fatigue.
And I’m not talking about feeling a bit tired because you’ve had a late night.
I’m talking about that deep exhaustion where even ordinary things feel like a massive effort.
For me, this is particularly challenging because of my job.
I spend most of my working life on my feet.
Coaching, demonstrating exercises, moving around the gym, talking to people, running a business and generally trying to keep all the plates spinning.
Some weeks, by Wednesday, I’m absolutely fucking knackered.
Not just ready for a coffee.
Properly fucked.
The frustrating thing is that you can feel like your UC is behaving itself, yet the fatigue is still there.
And when your job involves being physically active and mentally switched on all day, that’s not always easy to manage.
I’ve spent years pushing through tiredness, working ridiculous hours and convincing myself that getting everything done was somehow a badge of honour.
But living with UC has made me question that.
Sometimes pushing through isn’t being tough.
Sometimes it’s just leaving yourself completely wiped out for the rest of the week.
I’m learning that managing my energy is just as important as managing my workload.
And if that means occasionally easing off, so be it.
If you are experiencing persistent or worsening fatigue it is also something worth discussing with your medical team, rather than automatically putting everything down to UC.
Learning To Listen To My Body
One thing I’ve become better at over the years is recognising when something isn’t quite right.
Not perfectly.
I still spend plenty of time ignoring the warning signs, because you know I’m a stubborn cunt.
But I’m improving.
I pay more attention to my energy levels, changes in digestion and how my body responds to training, food and work.
Fortunately, things have been controlled well enough that my medical team was able to halve my medication.
That’s been bloody brilliant.
But this wasn’t me deciding to ditch the tablets because I felt better or because I’d discovered some magical nutritional cure.
It was a decision made with my clinical team.
Medication helps keep my condition under control. Feeling better doesn’t automatically mean the underlying inflammation has disappeared.
The goal isn’t to take the fewest tablets possible.
The goal is to stay well.
Nutrition: There’s No One Perfect Diet
Now, this is an area that’s particularly interesting to me because, alongside living with UC, I’m also a qualified MNU nutritionist.
And if there’s one thing I’ve learned, it’s that there is no single diet that works for everybody with IBD.
Believe me, I wish there was.
It would make life a hell of a lot easier.
When things are going well, I eat a varied, balanced diet that supports my health, training and active lifestyle.
Nothing particularly magical.
Enough food, protein, carbohydrates, fats, fruit, vegetables and fibre that I tolerate comfortably.
However, when I start experiencing milder symptoms, I sometimes make adjustments.
For me, temporarily reducing certain high-fibre foods and choosing smaller, easier-to-manage meals can help. I go beige.
But that’s what works for me.
It doesn’t mean everybody with UC needs to avoid fibre.
And it certainly doesn’t mean reducing fibre treats the inflammation itself.
Some people tolerate certain foods perfectly well, while others find those same foods aggravate their symptoms.
Even your own tolerance can change depending on how your condition is behaving.
That’s why blanket dietary advice is so unhelpful.
We also hear an enormous amount about gut health, microbiomes, probiotics and supplements.
It’s an interesting area of research, but we’re nowhere near having all the answers.
Anyone promising to cure your IBD with a special diet, microbiome test or expensive supplement deserves a healthy dose of scepticism followed by a big shout of fuck off.
Food can help manage symptoms and support your health.
But nutrition works alongside medical treatment, not instead of it.
If you’re experiencing a genuine flare, that’s something to discuss with your IBD team rather than trying to fix it through food alone.
Living With Something Nobody Can See
One of the hardest things about IBD is that people often can’t see what you’re dealing with.
You might look absolutely fine.
You might be working, training, laughing, socialising and getting on with life.
But underneath that, there can be constant planning, worry and exhaustion.
Wondering whether you’ll need the toilet.
Whether you’ve got enough energy to get through the day.
Whether that strange feeling in your stomach means something.
Or whether you’re going to have to cancel plans because your body has decided to be a cunt.
And sometimes explaining all of that is difficult.
We can happily discuss sore backs, dodgy knees and injuries without anybody batting an eyelid.
But mention bowel urgency, diarrhoea or the fear of not making it to the toilet, and suddenly everyone gets a bit uncomfortable.
Maybe we just need to get over that.
These conditions affect real people, and nobody should feel embarrassed about talking about them.
Getting On With Life
Having UC hasn’t stopped me doing the things I love.
I still train, coach, take part in events and enjoy getting out and about.
But I’ve learned that sometimes I need to adapt.
When things are going well, brilliant.
When they’re not, I might need to ease off, change my training or simply rest.
That’s fine.
There’s no medal for running yourself into the ground when your body is already struggling.
I’ve also learned that you can’t always tell what somebody else is dealing with.
The person who looks fit and healthy might be managing a chronic illness.
The person who’s exhausted might not simply need an earlier night.
The person who’s anxious about going somewhere might have a very good reason.
And the person who suddenly disappears halfway through a conversation might not be being rude. (This has happened a few times)
They might just really, really need a fucking toilet.
A Little More Understanding Goes A Long Way
I don’t want sympathy.
And I certainly don’t want ulcerative colitis to define who I am.
I’m a coach, a business owner, a nutritionist and somebody who enjoys training, getting outdoors, music, gigs and generally enjoying life.
I just also happen to live with UC.
Most of the time, I manage it pretty well.
Occasionally it reminds me that it’s still there, living in my body rent-free.
What I’d like people to understand is that chronic conditions don’t always look the way you expect.
You don’t have to be visibly ill to be struggling.
You don’t have to be experiencing a major flare to feel exhausted or anxious.
And you shouldn’t have to explain your entire medical history to deserve a little understanding.
So, if you know somebody living with IBD, remember that the things you take for granted might require a lot more thought for them.
If you’re living with it yourself, you’re certainly not the only person who’s walked into a pub, restaurant or shopping centre and immediately started looking for the fucking toilet.
Because sometimes the biggest achievement of the day isn’t a PB, a promotion or a brilliant workout.
It’s simply getting through the day, getting home and knowing you haven’t shit yourself.
