Women In Their Early 20s Are More Likely To Suffer From IBS Than Any Other Group. So Why Is Toilet Chat Still So Taboo?

I knew my trip around Australia would be life-changing but I’d never realised just how much, until I was in a hospital bed, in pain and 15,076km from home, having just been diagnosed with ulcerative colitis. And so began the process of living with the completely inconvenient, sometimes embarrassing and entirely unsexy inflammable bowel disease.

Did you know that as well as all the inequality and the periods, the chances of you getting an Inflammatory Bowel Disease (IBD) or having Irritable Bowel Syndrome (IBS) are far higher if you’re a woman? Yep, that’s actually a thing – one in five of us will be diagnosed with IBS at some point in our lives and, while IBD is a rarer at one in 250, they both affect more women proportionally more than men (some studies reckon women are twice as lucky to suffer than men).

And not only are women the most affected group, but the most common age group to be diagnosed with an IBD is 15-25, which is just plain cruel – you try figuring out who you are, how you’re going to make it in the world while dealing with a highly embarrassing illness that totally scuppers your social life. So why are we so afraid to talk about it?

IBD is used to describe two diseases, ulcerative colitis (UC) which affects the colon and Crohn’s disease, which can affect the entire digestive system; very unglamorous, long-term, chronic diseases and, with symptoms that include bloody stools, diarrhoea, constipation, bloating, stomach pains, weight loss and extreme tiredness. It’s not only painful, but embarrassing too (re-read those symptoms, yeah?). IBS is also a long-term condition which affects the digestive system, causing similar symptoms, and with pretty much no cure.

Aside from the fact that no-one knows what causes IBD or IBD, (or why it affects women so disproportionately), the most annoying thing about it all is the fact that we can’t talk about it, because it’s just not cool. No-one likes bowels. You don’t talk about them with friends like you might do with thrush or cystitis, or with your boyfriend, with whom you might have only just broached the period issue. Nope, bowels are taboo, unspoken and, tbh, a bit gross. So when you’re first made to talk about your bowel it’s as awkward and as uncomfortable as you imagine.

As I’ve already mentioned, I was diagnosed with ulcerative colitis when I was travelling in Australia which is about as inconvenient as it gets, but it also meant that I had to tell people about it. After two months of secretly suffering from every single symptom going and self-diagnosing UC through trusty Google (I didn’t want to see a doctor, knowing it would cost me a not-insignificant chunk of my hard-earned cash), the pain became too much. I gave in and went to the doctor, who advised me to wait until after the weekend (it was a Friday), but said it if couldn’t wait, then to go through A&E at the hospital to avoid more fees. I went straight away and stayed in Cairns hospital for a week, drugged up on three types of medication including steroids and trying to understand what UC was all about. I was discharged a day before my 24th birthday, free to carry on my trip but with strict instructions to keep taking my meds and see a UK doctor asap on my return. Which meant I couldn’t keep my new diagnosis a secret even if I’d wanted to. But even now, there’s such a taboo surrounding toilet habits, I still get embarrassed talking about it. But I (or we) aren’t alone.

Sara* 29, was diagnosed with Crohns at 25 and tends not to speak about it. ‘I know one other person with Crohn’s and we’ve spoken about it in the past. This person has spoken very publicly about it in front of other friends, and those people told me afterwards that it made them feel very uncomfortable, which has reinforced my view that people really don't want to hear about it.'

Not only do they want to hear about it, but try telling your boss that you can’t come into work because you’ve got a stomach ace, or explaining to your friend why you’re going to miss her birthday party because you’ve had chronic diarrhoea all day and the thought of leaving the house fills you with dread.

If you’ve got the flu, the office sympathises (or tells you to piss off home and stop infecting everyone), but if you dare to mention so much as a stomach ache eyes roll and you’re told to get over it or take paracetomol. And if you do dare to say, ‘Eugh, my IBD/IBS is playing up today,’ you’ll either be faced with a million questions (that you won’t want to answer), or people will squirm in their seat. And that’ll just make you want to scream, ‘Does that make you feel uncomfortable? Does it? Well it makes me feel uncomfortable too, I’m in total agony AND YOU SHOULD BE IMPRESSED THAT I EVEN MADE IT IN TODAY.’

The only reason I’ll go in to work when I feel that ill, aside from the fact that I’m determined not to be beaten by a bowel, is that I feel guilty about taking time off – something that resonated with almost everyone I spoke to with IBD. ‘When I was very ill, I was very worried about how it would affect my job. I went back to work five weeks after major abdominal surgery, because I was worried about how much time I’d had off, despite my doctor advising me to spend longer recovering,’ says Sara.

26-year-old IBS sufferer Becki agrees. ‘When my IBS is bad I get anxious at work as I worry about having to keep running to the loo. I’ve had several occasions at work where I have had to leave the office early because I have been in pain, or because I have stressed myself out so much that I need to come home and calm down.’ Not massively helpful when you have a condition that's exacerbated by stress.

Sara’s wary of going to music festivals, or any other event that means she’d have to queue for the loo, and for Becki, just leaving the house is a game of Russian roulette. ‘It can come on anytime, so whenever I leave the house I have that constant worry that I might end up with a bout of it while I am out. This can make going out quite stressful, especially if you are going somewhere on a night out, or maybe to a house where you don’t know the owner that well,’ she says.

And if you’re a woman, there’s also that ‘f’ word hovering over you: fertility. Sara says that it’s the not knowing whether her fertility will be, or already has, been affected by her Crohn’s that’s one of the toughest challenges she faces. According to Crohn’s and Colitis UK, generally if your IBD is inactive you shouldn’t have any more difficulty getting pregnant than a non-sufferer, however if your condition is active, and this is especially true if you're suffering from Crohn’s, then it could cause problems.

The temptation to shout, ‘WHY ME?’ is huge every time I have to leave a party early, turn down my mum’s amazing homemade curry or run to the loo in the middle of an important meeting. And the frustration is that nobody knows ‘Why me?’ at all. It could be to do with diet or lifestyle, but then again, it’s probably not. For UC sufferers, a low-fibre diet is recommended during a flare up. So not only are you bloated and in pain, you’re having to swap your healthy brown bread, rice and pasta for the white alternatives and feeling every pound of weight you’re putting on doing so. IT’S JUST NOT FAIR.

But why am I the only one talking about it? Because the fact is, I’m not the only one living with it. There are at least 261,000 IBD sufferers in the UK and a further one in five of us who are affected by IBS. I don’t know about you but I’m tired of covering up my pains and pills. So why don’t we start standing up and shouting about our bowels? How about if we stop being so ashamed and start letting the grimaces be noticed? If, when someone asks if we’re OK, we tell them no. When they ask what's wrong, we explain it. Maybe if we stop being uncomfortable talking about it, they’ll feel less uncomfortable hearing it. It’s not so long ago that periods were taboo, but now we’ll happily talk tampons and swap ways to combat cramps, so let’s do the same for the rest of our toilet habits. Guys, it’s time to make bowels sexy. Are you with me?

*names have been changed

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This article originally appeared on The Debrief.