Living with IBS
1st June 2017
Irritable bowel syndrome is debilitating, distressing and usually lifelong but pharmacy staff can help people with the condition manage their symptoms
Everyone experiences an upset stomach from time to time, but for some people, the gut causes discomfort on a more regular basis than can be attributed to a dodgy takeaway or period of stress. This may be irritable bowel syndrome (IBS), a condition that can cause one or more of the following: stomach cramps, bloating, diarrhoea and constipation. Sometimes symptoms just last for a few days, but they can last for months at a time. While IBS is not life-threatening, it can be extremely debilitating – partly because it can be very unpredictable in nature.
A surprisingly large number of people suffer from IBS. According to NHS Choices, up to one in five people will be affected at some point in their life. However, the prevalence may well be higher than this as many people try to manage their symptoms themselves rather than seeking medical advice. IBS usually develops at between 20 and 30 years of age, with twice as many women affected as men. It isn’t clear what causes it.
Suffering in silence
There are two main issues surrounding the management of IBS: the lack of a diagnostic test, and the absence of a cure. Dr Simon Smale, consultant gastroenterologist at York Teaching Hospital NHS Foundation Trust, says: “There is often a delay in diagnosing IBS because healthcare professionals are worried about missing something else. But if a patient has had a full blood count that hasn’t shown anything untoward, their inflammatory markers and serology for coeliac disease are normal, and they have no red flag symptoms, such as unexplained weight loss, treating the symptoms as IBS is a sensible approach, even if the GP wants to run other tests just to be sure there is nothing else going on.”
The first steps in managing IBS usually involve lifestyle changes, says Dr Smale. “The first thing I ask is what the patient’s diet is like, both in terms of timing and what they eat and drink,” he explains. “For example, they may be surviving on coffee all day, then having a heavy dinner of fish and chips washed down with a couple of pints of beer in the evening, but in IBS, it is better to limit caffeinated drinks to three a day and have regular meals with no big gaps in between. After that, I look at specific triggers, particularly the amount of resistant starch (which is in processed foods such as microwave meals and ready-made pasta sauces), lactose and FODMAPs (see page 30) someone is getting. All of these substances can lead to excess fermentation by bacteria in the colon, which can exacerbate symptoms.”
Another lifestyle factor that needs to be considered is stress, says Dr Smale: “It is really hard to change behaviours. The person has to want to do it and also needs support to find what works for them. So while yoga might work as a relaxation technique for some people, others don’t have the time or money to commit to a class twice a week. But using a free mindfulness app such as Headspace could be useful. In fact, many people use an app for three or four weeks, then stop because they have learned what they need to learn to get into a new habit, which is great.”
The role of sleep in IBS has not been explored in detail, but Dr Smale, who is also a trustee of The IBS Network charity, comments: “It is important to get enough quality rest, and to look at when and why someone isn’t getting this, if that is the case. Sleep trackers and apps can be very helpful for this. Stopping smoking is also a good thing to do, and getting some exercise has been shown to have a really good effect on gut motility, so is particularly good for IBS sufferers who experience constipation. The ideal is to do something at least three times a week for half an hour that makes you slightly out of breath, but again it needs to be something that the individual enjoys, which for some might be walking the dog whereas others prefer a session at the gym.”
Dr Smale continues: “It is also worth considering whether psychological interventions or alternative therapies may be useful. Cognitive behavioural therapy and clinical psychology can really help some people, depending on whether or not they have any fears or anxieties underlying their condition, and there is good evidence for hypnotherapy. The main thing to remember is that lifestyle changes can make a big difference to IBS symptoms, and if those changes are sustained, the relief from symptoms will be too.”
For some conditions, medication is the answer, but things are a little fuzzier when it comes to IBS. “The best medicines for IBS only work for around one in five people,” says Dr Smale.
The drug to try depends on the symptom that is causing the most trouble, he states, suggesting domperidone for bloating, loperamide for diarrhoea, macrogols for constipation – stimulant, bulk forming and other osmotic laxatives can make matters worse – and an antispasmodic such as mebeverine for colicky pain. In severe cases, amitriptyline can be very beneficial, Dr Smale adds.
If diarrhoea is an issue, then as well as the option of taking loperamide, IBS patients should drink plenty of fluids to avoid dehydration. Oral rehydration solutions are a good way of replacing lost fluids, minerals and salts, and can be used both to prevent or treat dehydration.
Probiotics – sometimes referred to as ‘good bacteria’ – have been mooted as a solution for IBS as they are believed to help maintain the balance of flora in the gut. The National Institute for Health and Care Excellence (NICE) recommends taking a probiotic for at least four weeks to see if it helps, and Dr Smale advises taking a pharmaceutical grade product that has shown promise in clinical trials.
Given the complexity of IBS and the fact that over-the-counter products are usually restricted to those who have been diagnosed with the condition, it could be tempting to shy away from this patient group. But Ewa Gabzdyl, pharmacist adviser to The IBS Network, says there is a great deal that pharmacists and their staff can do. “Ask open questions and use soft skills to explore exactly what it is the patient is going through and what they need,” she advises. “Suggesting they keep a day-to-day diary of their symptoms can help analyse the situation, all the while being on the lookout for red flag symptoms.”
IBS can be difficult to understand, and some patients can get very distressed. “It can be very debilitating and have a big impact on their mental health,” Ewa says. “Pharmacy staff may be the healthcare professionals the patient sees most regularly, so work on building relationships so that you are able to support them with lifestyle changes and signpost to good quality resources such as the Patient UK website or The IBS Network. There is also an opportunity to help customers prepare for referrals, for example by encouraging them to keep a symptom and food diary ahead of a dietitian appointment. This empowers the patient and encourages partnership working with healthcare professionals, which benefits everyone.”
The low FODMAP diet
FODMAPs – fermentable oligo-, di- and monosaccharides and polyols – are carbohydrates that are poorly absorbed in the small intestine. This means that they increase the amount of water in this part of the gut, which contributes towards loose stools, and they pass into the large intestine where bacteria ferment them, creating the gas that contributes to bloating and flatulence. FODMAPs are found in some fruits and vegetables, animal milk, wheat products and beans.
Australian researchers have developed the low FODMAP diet, which many IBS sufferers find manages their gut symptoms effectively. There are three stages to the diet:
- Restriction: Avoiding foods that are high in FODMAPs for four to eight weeks. If symptoms improve during this time, there is a good chance that a low FODMAP diet will be beneficial to the person
- Reintroduction: Adding some high FODMAP foods back into the diet in order to identify which ones are triggers and in what quantities
- Personalisation: Returning to a diet that is as normal as possible but avoids
Researchers at King’s College London have adapted the Australian findings for patients in the UK, but they sound a note of caution. “As this is a complex and restrictive diet, it is very important that people follow a well-balanced diet and meet their nutritional requirements,” they advise. “The diet should be individualised to each patient, taking into consideration their usual dietary intake and symptom profile. Therefore, it is strongly recommended that people see a dietitian before following the low FODMAP Diet.”
There is a lot of information available online about the low FODMAP diet, but the King’s College researchers don’t believe that IBS sufferers should try the diet without specialist advice from a registered dietitian. “It is not as simple as following a list of ‘foods to eat’ and ‘foods not to eat’,” they say. “High FODMAP ingredients are often hidden in packaged foods. People will need to learn about how to read food labels and how to make sensible decisions when eating out.”
Furthermore, the relative newness of the low FODMAP diet means there is a danger that people will receive out of date or conflicting advice. Success also hinges on following the diet properly.
More than a letter’s difference
IBS and IBD sound closely related, but the differences are significantly greater than a single letter. IBD – or inflammatory bowel disease – is an umbrella term that covers two conditions: ulcerative colitis (UC) and Crohn’s disease. Both involve inflammation of the gut, which in UC is confined to the large intestine, whereas any part of the gastrointestinal tract may be affected in Crohn’s disease.
Symptoms usually include abdominal pain, cramping or bloating, recurrent diarrhoea which may have blood in it, weight loss and extreme tiredness. There may also be wider issues such as fever, vomiting, anaemia, arthritis, and painful red eyes or skin nodules. As with IBS, the symptoms of IBD can come and go, the condition is lifelong and there is no cure.
Treatment involves trying to relieve symptoms and prevent them from flaring up. Lifestyle changes such as stopping smoking and adopting a special diet can help, but many sufferers need medication, which may be quite heavy-duty drugs such as immunosuppressants, biological therapies and antibiotics. An estimated 20 per cent of patients with UC and 60-75 per cent of those with Crohn’s disease require surgery at some point. IBD also increases the risk of bowel cancer in later life.
Life with IBS: a case study
The first hint for Lara Moon that something wasn’t quite right was when she had a stomach bug that didn’t clear up. “Everyone in the office had had it, and it had cleared up in a few days,” Lara recalls. “But it really affected me. I had bad pain in my gut, felt very nauseous and my bowel movements were all over the place.”
Lara went to her GP and underwent tests for conditions as diverse and serious as coeliac disease and bowel cancer, all of which came back negative. “I still wasn’t feeling right, so I did some research of my own and came across IBS, which is quite commonly triggered by gastroenteritis,” says Lara. “I took the information I had found to my doctor and she agreed that as all of the other possibilities had been eliminated, that was probably the right diagnosis and she prescribed me mebeverine.”
“To be honest, having a diagnosis and a prescription wasn’t that helpful to start with,” Lara adds. “IBS is an umbrella term for lots of symptoms, some of which aren’t even related to the gut, and that makes it really hard to know how to manage it on a day-to-day basis. At my lowest point, I was reluctant to leave the house in case my gut played up. Then I found The IBS Network and got the help I needed to push for a referral to a gastroenterologist and dietitian.”
This was the turning point that Lara needed to work out what triggered her symptoms – sleep deprivation, alcohol and caffeine – and how to manage her medication and diet. Lara, now 24 years old, concludes: “It was a journey that slowly but surely took me from a foggy bubble to sources of help and people who understood IBS. My pharmacy has been great – I can go there without needing to make an appointment and they have the in-depth knowledge, time and inclination to explain to me how medicines work and make recommendations if I get other symptoms such as reflux.”