Irritable bowel syndrome (IBS) is a common condition in the UK, with two in every 10 people experiencing it and having episodes at least six times per year.¹ It affects the digestive system and can cause a variety of symptoms, from abdominal pain and bloating to diarrhoea and constipation, and more serious cases can have a significant impact on someone’s quality of life.
Working in partnership with the world’s largest social network, HealthUnlocked, we decided to conduct some keyword analysis for the condition, and explore the significance of our findings. We spoke to Liz Champion, Communications Manager at IBS Network, and Treated.com’s Clinical Lead Dr Daniel Atkinson about the results, and how the data corresponds with what is understood about IBS from a medical perspective.
Drawing from a sample of over 86,000 online posts from over 7,500 users in the IBS Network community, more than 15,500 posts and replies contained the above terms.
Of the 15,528 posts, the term anxiety/anxious was used 7,638 times - the most frequently deployed in the dataset. Given the nature of IBS - its unpredictability in terms of flare-ups, and symptoms such as changes in bowel habits and diarrhoea - it makes sense that the condition would trigger anxiety specifically in sufferers. To really put this into context however, we asked the IBS Network community about what particular aspects of IBS made them anxious.
- Choosing from seven criteria, of the 299 voters in total who took part, 63.7% of the community felt that symptoms were the most significant cause of anxiety - the largest in the dataset.
- 32.7% of the community felt particularly anxious about having to conceal symptoms, the fourth highest entry in the poll.
- Anxiety about a sudden urge to empty the bowel, and subsequent concern about not being able to access a toilet in time, was heavily cited in comments from the community, and this reflects the significance of the mental effects of IBS, as well as the physical.
You can see the full results of the poll at HealthUnlocked.
IBS may lead to feelings of embarrassment
The potential embarrassment for people with the condition in social or public situations, and the anticipation of these consequences in the first place, is a particularly challenging aspect of IBS. As Dr Atkinson points out:
‘Diarrhoea that strikes without warning can be extremely inconvenient for people with IBS, as we’re not always in an environment or situation where the facilities to deal with it are available or very accessible.
‘This understandably may cause considerable distress for sufferers, and until these symptoms are brought under control, it can be more difficult to reduce the anxiety that’s triggered as a consequence.’
Physical pain and IBS
Pain triggered by IBS was another common source of anxiety in the feedback section of the poll. Physical pain caused by the condition can manifest in numerous ways: from abdominal pain, diarrhoea and constipation to nausea, backache and bloating. The fact that these symptoms can fluctuate in severity from one day to the next means that sufferers may not know how much (or how little) pain they are going to be in daily, and so the term ‘anxiety/anxious’, in the context of the condition as something of an unknown quantity, is incredibly significant.
‘It can take time to identify what exactly is triggering your IBS flare-ups - whether it’s something specific in your diet or a particular psychological or emotional factor, or perhaps a combination of the two,’ notes Dr Atkinson.
‘Without a thorough understanding of what exactly is triggering symptoms, people with IBS can be vulnerable to sudden “attacks” of the condition, which may persist until whatever is causing them is isolated.’
IBS can impact on peoples’ social lives and relationships
With 161 votes cast, ‘how it affects my social life and relationship(s)’ was the second most popular cause of anxiety amongst IBS sufferers in the poll. This finding very much supports existing research; in a recent survey of more than 300 healthcare professionals, 79% felt that IBS can impact on a patient’s relationships and dating life.²
Discussing the condition with friends, family, a partner or someone you may be dating can be very difficult, as symptoms may result in feelings of shame. Eating with others can also be made more complicated, as certain foods may lead to flare-ups and exacerbate the condition, leading to potential implications on ‘eating out’ and an increased emphasis on planning specific meals in advance.
Another trigger for anxiety from a social and relationship perspective with IBS is intimacy. Given the nature of the condition, it’s hardly surprising that it has repercussions on libido, although it may be the case that it’s anxiety in the face of intimacy, rather than symptoms, that’s a more significant cause.
‘The anticipation of symptoms unfolding during intimacy may be more problematic for IBS sufferers and their relationships than those symptoms actually manifesting at such times,’ observes Dr Atkinson.
‘Talking through these fears with your partner or spouse may help to ease concerns about the condition making intimacy more difficult.’
It’s clear that the detrimental effects of IBS on someone’s social life and relationships can be myriad, and that many of these factors could lead to feelings of anxiety specifically. The prominence of anxiety surrounding social life and relationships in the data also perhaps points towards some people with the condition not receiving sufficient support in this aspect of their lives. Communities like the IBS Network enable sufferers to talk about the condition with others, and can facilitate help with the challenges of IBS.
Talking therapies are another treatment option for sufferers experiencing stress and anxiety. As Liz explains:
‘Keeping IBS a secret can cause a huge amount of stress, which can exacerbate the condition.
‘Cognitive behavioural therapy and hypnotherapy have some evidence of efficacy, and are worth discussing with a GP for a referral.’
Dietary and lifestyle changes for IBS
Anxiety surrounding diet and IBS was another popular factor in the poll, with 130 votes. The condition can lead to the muscles in the intestine becoming more reactive, and the increased sensitivity may result in the bowel reacting too greatly. Particular foods can trigger this in the gut, and in some cases may have a significant bearing on what sufferers can eat without experiencing symptoms.
There are a number of guidelines in place for people with IBS and dietary habits. Reducing intake of hot, spicy foods, caffeinated, alcoholic or carbonated drinks, and fruit, onions and pulses, for example, is widely recommended for sufferers.
‘Once you have an IBS diagnosis, looking at your diet and lifestyle is the first line treatment,’ says Liz.
‘Try making one change at a time, whether that’s reducing high fat, processed and reheated foods, such as chocolate, dairy, fried foods and cakes, drinking up to 2 litres of non alcoholic fluids per day, or limiting high fibre foods, such as wholemeal bread and whole wheat cereals.’
However, it should be noted that establishing what triggers symptoms and what doesn’t is very subjective, and may vary from one individual to the next.
Given the uncertainty about what foods and drinks precisely may exacerbate the condition, and the fact that it can be a lengthy process of trial and error, it’s understandable that these circumstances may give rise to anxiety amongst sufferers, and the wide scale impact of these restrictions is clearly reflected in the data.
The FODMAP (Fermentable Oligosaccharides, Disaccharides, Monosaccharides and Polyols) diet received some coverage in the comments section for the IBS Network community, and there is evidence to support that this diet can help to alleviate the pain and discomfort that stems from the condition. As many as 85% of patients may see their symptoms ease, according to studies.³
The diet consists of limiting the body’s intake of simple and more complex sugars - fermentable oligosaccharides, disaccharides, monosaccharides and polyols - which are difficult to absorb. An increased amount of fluid enters the bowel, and this, along with fermentation of FODMAP sugars by bacteria in the colon, gives rise to IBS symptoms. These sugars can be found in fruit and vegetables, as well as in milk and wheat.
Having reduced the volume of these sugars for between four and eight weeks, they are then reintroduced, to identify which ones are problematic for IBS sufferers and which aren’t. The diet has been shown to increase the number of good bacteria in the gut, although the long-term impact of a FODMAP diet on the body and IBS remains unclear.
In spite of anxiety about eating with IBS receiving the third highest number of votes in the poll, the FODMAP diet does seem to have a beneficial effect on symptoms for many with the condition, and perhaps could pave the way for significant progress (at the very least, in the short-term). It may not be suitable for all IBS sufferers however, and an assessment should be made by a dietician first as to whether the diet is appropriate for that individual.
‘In cases where standard, more recognised adjustments to diet don’t seem to be reducing someone’s IBS symptoms, the FODMAP diet, under the close supervision of a specialist, may be an avenue that’s worth exploring,’ says Dr Atkinson.
‘It’s very important that you consult a dietician directly for information and guidance about FODMAP, as information online on the subject isn’t always accurate and correct.’
IBS and the significance of stress
The keyword ‘Stress / stressed’ was used 7,010 times in posts and replies amongst the IBS Network community, and so came out a fairly close second to the term ‘anxiety / anxious’ in the data results. From a medical standpoint, ‘stress’ is a word that we commonly use to explain physical symptoms such as bloating, pain and constipation, which are typical symptoms of IBS. It should also be noted that, although it isn’t categorised as a psychological disorder, the condition has come to be viewed as closely linked to stress.
A multitude of websites on the condition, be it the NHS, Patient.info and About IBS, to name only a few, use the specific term ‘stress’ as a cause of the condition. It’s therefore very much a part of the IBS vernacular from a professional as well as a patient perspective, and one is likely to inform the other in terms of usage.
IBS is linked to defective signalling between the brain and the nervous system in the intestinal area, and any psychological or emotional difficulties can manifest in the gut. As such, we know that stress specifically often makes IBS symptoms worse. Examples of physical stressors that can have repercussions on IBS symptoms are infection and surgery, while the loss of a job, divorce or a history of trauma are examples of potential psychological stressors.
It’s clear that stress can impact on IBS in numerous ways, and research findings correlate with its prominence in the data results; it has been shown that there is more motion and greater sensitivity in the colon as a consequence of stress amongst IBS sufferers, as compared to individuals who don’t have the condition.
The term ‘worry / worrying / worried’ ranked third in the data results, with 5,153 usages among the IBS community. It’s a condition that can be extremely inconvenient, and the word ‘worry’ specifically was used considerably frequently not only in the posts and replies of the IBS Network community, but also in the reply section of the poll on ‘What in particular about IBS causes you to be anxious?’
The respondents’ replies here referred to worries about the condition manifesting at awkward times, be it finding a toilet in time whilst ‘on the go’ or getting to work on time in light of symptoms. The term ‘worry’, then, appears to be particularly applicable to the sometimes contradictory and erratic nature of IBS. Bouts of diarrhoea for instance may intersperse with constipation, and people can go for months without experiencing any symptoms to suddenly having flare-ups, which may cause feelings of depression and anxiety. The data once more supports this; the term ‘depression / depressed’ is the ninth highest entry in the findings, with a frequency count amongst the community of 1,223 usages.
The sense of operating between extremes, which may stem from having no symptoms for lengthy periods to suddenly having flare ups, is an example of IBS presenting in a manner that’s very distressing and unexpected for sufferers, and is likely to feed into feeling scared, fearful and upset. These words were further, popular terms used by the Network community. In the data study, ‘Scare / scared / scary’ had a frequency count of 2,145 usages (the fourth highest), ‘fear / fearful / afraid’ a frequency count of 1,541 usages (the sixth highest) and ‘upset’ a frequency count of 1,185 usages (the ninth highest).
IBS may be complex in nature, but symptoms can be managed
Although IBS may be very debilitating for some people, and whilst there is no cure, symptoms can be controlled effectively through lifestyle changes, diet and medication, and many people with the condition manage it well. The terms ‘relief / relieved’ and ‘happiness / happy’ rank highly in the data findings, with a total frequency of 1,750 usages (the fifth highest) and 1,358 usages (the seventh highest) respectively. The recurrence of these specific words in the data reflect that those with the condition, given the right support, mindset and advice, can learn to tackle symptoms successfully, and avoid experiencing detriments to their quality of life.
‘IBS may be difficult to confront and deal with, but it can be managed if you’re prepared to try and determine what may be causing it in the first place,’ indicates Dr Atkinson.
‘This process may involve conducting some extensive research yourself through trial and error, and reaching out to friends, family, professionals and support groups.
‘You are not alone. There is lots of help available, and you can get better. ’
Exercise has been shown to have a beneficial effect on the digestive system, and may reduce the likelihood of constipation for people with IBS. A recent study revealed that IBS patients who carried out 30 minutes of moderate exercise every day, five days per week, reported that their constipation symptoms had lessened considerably, as compared to a group who did not participate in the research.4
Any course of action that restricts stress levels or any emotional difficulties may also help to keep symptoms in check. A symptom diary, in which every item of food and drink consumed is recorded over a 2-4 week period, along with times of stress and points at which exercise is taken, may also make sufferers more aware of triggers, be it food, alcohol or emotional pressures. It may also help to highlight if exercise has a beneficial impact on symptoms for that individual.
IBS and medication
As well as dietary changes, certain medications can ease IBS symptoms. Antispasmodic treatments such as mebeverine, alverine citrate and peppermint oil may help to relax muscles in the gut, while antidiarrhoeal medicines such as loperamide can be effective if diarrhoea is a significant issue. Tricyclic antidepressants such as amitriptyline and SSRI medications like fluoxetine may also adjust the way in which pain is experienced.
Cause for optimism
The fact that ‘relief/relieved’ and ‘happiness/happy’ are juxtaposed alongside ‘fear /fearful / afraid’ and ‘Depression /depressed’ in the data results is also indicative of the complex makeup of IBS, and the broad scale of its severity from one person to the next. Ultimately however, the data illustrates that there is significant cause for optimism for anyone who is struggling with the condition, provided that certain action is taken where necessary; be it identifying and reducing causes of stress, establishing strong support networks, or making particular dietary adjustments. When these measures are in place, the condition typically eases over time, and some people even find that their symptoms clear up permanently.
The IBS Network is the national charity helping people to live well with IBS.
Membership is available, and the charity has an online store with a variety of products to help people manage their IBS. Find out more on The IBS Network website: www.theibsnetwork.org
1. Bupa. Irritable bowel syndrome (IBS). 2020.
2. Patient. How IBS affects sex, dating and relationships. 2019.
3. About IBS. Five Low FODMAP Diet Pitfalls (and What You Can Do to Avoid Them). 2017.
4. Bowel & Cancer Research. Exercise and IBS. 2020.