'I never had an Indian takeaway… I wouldn't have dared' – How these IBS sufferers have learnt to manage their symptoms

‘I think of IBS as an umbrella term,” says Deirdre O’Donovan, consultant gastroenterologist. “The only cardinal feature that has to be present is abdominal discomfort.” There can also be bloating, diarrhoea and constipation, but the discomfort is key in order to distinguish constipation, for example, for which there are many causes, from constipation with IBS. “There is no single test that tells you,” O’Donovan says, “and people struggle with that. First we would check for things like coeliac disease, and other simple things that have to be excluded, including thyroid abnormalities and bowel inflammation. To make the diagnosis, these tests have to come back normal. It’s a process of exclusion.”

GPs, she says, will listen for symptoms such as “bleeding from the back passage and considerable weight loss,” because “these are never associated with IBS”.

Once diagnosed, “there is no single treatment. It’s a case of trying to understand the main driving forces in each patient. Is it diet? In which case, the FODMAP diet can be helpful.” This is a diet low in fermentable carbs, and will generally include restricting some or all of high FODMAP foods: wheat, rye, legumes, various fruits and vegetables, such as garlic and onions, milk, yoghurt, soft cheese and various fruits including blackberries.

However, diet isn’t the answer for all sufferers with IBS. “Supplementing with probiotics can be very useful for some. For others, stress can be a huge factor,” says O’Donovan. “The gut-brain axis is now very well-recognised. In that case, there might be mild dietary adjustments, but really, it’s about managing stress. Here, low-dose anti-depressants can be very effective.”

IBS, O’Donovan says, “can wax and wane. It’s about management, not cure, and the key is for each individual to understand where their symptoms are coming from. For most, we will manage to improve their symptoms. But,” she points out, “if someone is getting no relief, then it’s time to revisit the diagnosis. Also, if there is a change in symptoms in someone who has had IBS for years, it’s time for another look.”

When Deirdre first qualified, in 1996, “IBS wouldn’t have been given much time. But the last 10 years has seen a significant shift. We are living such incredibly busy lives with more stress, more pressure, being constantly ‘on’, and so I am seeing a lot more IBS. And a lot more in young teenage girls.”

‘I never had an Indian takeaway until a few months ago,” says Jon Mulhall. “I wouldn’t have dared.”

For the estimated 20,000 people in Ireland affected by irritable bowel syndrome (the figure may be far higher; it has been suggested that IBS is diagnosed in only 5pc to 7pc of those who suffer), that may well sound like familiar caution. Women are twice as likely to suffer with IBS as men, and, frustratingly, there is no known cause.

Jon (38) who lives in Dublin and works in construction sales, was in his late 20s when he began noticing stomach and bowel problems. “My mum has always had stomach problems too – and my grandfather – but she manages hers through diet. Everything she eats is carefully prepared from scratch. But I was in my 20s, I wanted to be able to go out, eat and drink whatever my friends did. However, the older I got, the worse the symptoms got.”

He was frequently in pain and suffered from bad diarrhoea, meaning he often needed a loo at short notice, something that had a negative effect on his social life and sense of self. “I would have been out and I would have been worried – ‘is this going to kick off and am I going to get home in time?’ I don’t like using public toilets, which made everything much more difficult. Once, I didn’t make it in time.”

He laughs about it now, but with a ruefulness that says it wasn’t funny, at all, at the time. Looking back, he says, he can see how much his conditioned “curtailed my life. I didn’t go to Australia because of it. My friends were all going off for a year, to Thailand as well, but I couldn’t do that.”

Did he tell anyone what was going on with him? “Not at all,” he says. “I would have been mortified. My mum knew, and she also knew what I needed to do – change my diet – but I wasn’t ready for that.” Instead, he self-medicated. “I was popping Imodium all weekend, so I could go out.”

It took until he was 32 before Jon decided, “enough is enough,” and went to his GP. He was diagnosed with IBS and started on a low-FODMAP diet (see panel, right), which made a difference, “I also began looking after myself more – going to the gym, changing my lifestyle.”

However, the most significant difference came when a friend, a gastro-surgeon, recommended a probiotic supplement. “That changed my life,” Jon says. “That was about four years ago. At first I took it every day, then every two days, and taking it helps me lead a normal life. I stopped for a few months, and my symptoms began to come back. I also found my sinuses and back teeth started hurting; the stomach is connected to everything.”

He is still careful to eat well, and “I still have trigger foods, like peas, but the probiotic means I don’t have to stick to a controlled diet. Without it, I couldn’t eat any processed food at all, including bread.” Would he say there was a psychological trigger to his IBS? “No, I wouldn’t. For me, it’s a food thing, 100pc.”

For Vivienne McCarthy (39), IBS started when she was “around 14. Around the time my menstruation cycle started. I would get really bad cramps and severe bloating.” She soon looked for help, but found that “there didn’t seem to be many answers from my GP. IBS was a very general term, and diet or supplements were never discussed. I was put on the contraception pill as my stomach would get so bad near my period, and that did help to regulate things somewhat.”

Over the years, Vivienne – who lives in Cork – learned for herself what triggers her symptoms. “I cut out foods like wheat, dairy and some vegetables including broccoli. A dietician helped me with this process. I have also found fatty foods and too much sugar will cause a flare-up. After years of exclusion, I slowly introduced those foods back in later years and they don’t affect me as much now.”

In her mid-30s, Vivienne “went to a brilliant doctor when I was trying to get pregnant and she was the first to tell me about probiotics. That has been my saving grace.”

Happily for Vivienne, she did become pregnant, and “strangely enough pregnancy seemed to shift something and cured my IBS. I could literally eat whatever I wanted.”

At the moment, the IBS “is very under control, but looking back, it really did take over my life. When I got a flare up I would be in the worst mood as I would feel so sick and bloated. I would miss out on social events as I just wouldn’t feel up to them. And holidays were a nightmare – within days of being out of my usual routine and away from my regular food, I would be sick, with really bad cramping, feeling nauseous and with a bloated tummy, and it would take weeks, sometimes months to get back to normal.” Conversely, “when my stomach is good, I see a huge change in my mood. It literally drags you down. Healthy gut, healthy mind.”

Getting a diagnosis of IBS can be difficult – often it is through a process of elimination, rather than anything more pro-active. Even for Doireann O’Leary, a doctor working in general practice, “it took a long time to really identify it and treat it. For as long as I can remember, I was a very fussy eater and ate a very bland diet (much to my mother’s dismay!), but working as a junior doctor, it was difficult to maintain a healthy lifestyle, exercise, stay hydrated and eat well. I was admitted to hospital a few times with extreme abdominal pain and had a number of investigations done over the course of a few years. But it wasn’t until I was about 30 that we realised it was IBS.”

Her main symptoms were “bloating and abdominal pain. And before I knew what I was dealing with, I was at a point where I was actually fearful of going away for a weekend or going on holiday. I was frightened I’d get a flare-up of the mystery pain. I think some people don’t realise how debilitating IBS can be; it can be very uncomfortable, exhausting and embarrassing.”

For Doireann, diagnosis meant adopting a variety of lifestyle changes. “The key for me has been getting regular exercise, staying hydrated, following a predominantly low FODMAP diet, and taking a daily probiotic. Thankfully, now that I have identified my triggers, I know how to manage it.”

Stress-management, she says, is also a feature. “My IBS flares were far more frequent when I was working in hospitals as opposed to in general practice, a work environment that is much more conducive to healthy living.”

From both her professional, and personal, viewpoint, Doireann’s advice is “If you think, reading this, that you might have IBS, talk to your GP about your symptoms, and ask to speak to a dietitian.”

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