What's it like to have IBS?

Credit: Grant Whitehurst, Univ. Hosp. South Manchester

When I was a medical student in the 1970s, we were told that people with IBS were oversensitive females and that they shouldn't be taken too seriously. This erroneous perception of IBS has unfortunately persisted. But the truth is that IBS is a genuine condition that affects millions of people, men as well as women. It's actually quite common: about 15% of adults in the United Kingdom have it. Typically, patients have abdominal pain, bloating and bowel problems: some people are constipated, others have diarrhoea, some flit between the two. But they may also experience backache, fatigue or nausea, and have bladder and/or gynaecological problems. For some people, the symptoms are manageable, but for others they can be absolutely devastating.

For some people, the symptoms are so severe and restrictive that they can't leave the house.

I see the latter, patients with very severe IBS. Half of the people who come to my clinic have faecal incontinence. Some nights, they wake up in a pool of faeces. Women can have incontinence during intercourse. Sex is painful. Sometimes the bloating is so bad that they look heavily pregnant and the pain is so severe that they liken it to labour, but at least labour comes to an end. Over time, their sense of their own femininity is eroded. For some people, the symptoms are so severe and restrictive that they can't leave the house. The sick days rack up and employers are unsympathetic. Some of my patients who also have cancer tell me that having IBS is worse. People with IBS can feel totally hopeless — and still they are told that their symptoms are all in their head.

What happens when someone with these symptoms goes to see their doctor?

The first interaction is absolutely crucial. It can set a patient on a good or a bad journey through the health-care system. What I have observed in the United Kingdom and many other countries is that, because general practitioners (GPs) are pushed for time, when someone with IBS describes their range of symptoms the doctor tends to focus on the one that is most troubling. If it's bladder problems, for example, they might prescribe antibiotics. If it's menstrual problems, they might send them to a gynaecologist. The result is that the IBS goes unrecognized, and treatments given to ease these other symptoms can sometimes backfire. Antibiotics, for example, can make IBS worse. Surgical interventions can aggravate the already hypersensitive gastrointestinal tract.

In the worst cases, patients end up ricocheting between their GP and various specialists. A person can end up having multiple scans, colonoscopies and gastroscopies, all of which help to exclude serious diseases such as an ulcer, Crohn's disease or cancer, but which leave the patient no closer to a definitive diagnosis or to having their symptoms eased. At this point, they are often told either that there is nothing wrong with them, or that it's probably IBS and that they need to learn to live with it. It's only after a lot of back and forth that patients eventually end up seeing someone like me, who specializes in severe cases of IBS.

Why is it so difficult to get a definitive diagnosis of IBS?

Doctors are programmed to do tests and to base their diagnoses on the results. But there is no test for IBS. It is a collection of symptoms — a syndrome, not a disease (see page S110). I don't do tests. I listen. I sit there and I let people talk. Then I piece together their symptoms and make a clinical judgement. Not everyone has the confidence to do this.

Sometimes people with IBS do receive a diagnosis from a GP or a specialist, but it's rarely unequivocal and the treatments that follow are not always successful. For example, my colleague Carol Francis, who now works at the Countess of Chester Hospital, and I showed that fibre-rich diets make only 10% of people with IBS feel better; 55% felt worse (C. Y. Francis & P. J. Whorwell Lancet 344, 39–40; 1994). Yet half of all doctors still preach the myth that people with IBS should eat more fibre. Sometimes medication is prescribed. Antispasmodics can alleviate pain by relaxing the bowel muscle, and laxatives and antidiarrhoea medication can be used to control bowel symptoms. Old-fashioned tricyclic antidepressants, which also have an analgesic effect, can help, but by the time they are offered, people with IBS are so used to hearing that their illness is all in their head that often they don't want to take them.

How do you help people who have severe IBS?

I am a tertiary-care specialist. GPs and secondary-care specialists send me people who have extreme and persistent IBS. I see about 2,000 patients a year. Many of them will have been stuck in the health-care system for 5 to 10 years. These are the people who are affected so badly that they are ceasing to function socially and in the workplace; 38% of them have even contemplated suicide (V. Miller et al. Clin. Gastroenterol. Hepatol. 2, 1064–1068; 2004).

By the time they find me, they are desperate for a diagnosis, which I can usually give them in our first session. I tell them I cannot cure them, but that I can help them if they help me by being engaged and involved.

I start by putting them on a very strict diet. The FODMAP diet, which excludes certain non-digestible carbohydrates, is currently very popular for IBS (see page S108). I prescribe a diet that's even more extreme and restrictive than FODMAP. Under my guidance, the patient gradually reintroduces foods to see what can be tolerated. It's an approach that helps about half of my patients.

Next, I look at medication. I try different drugs, doses and combinations. If I suggest a tricyclic antidepressant, I explain that the low dose being offered is not for depression — most of my patients are not depressed, which is amazing when you think how awful their symptoms are — but to reduce pain. Amitriptyline, for example, helps more than half of my patients.

Can hypnotherapy help?

Yes, it can. That's why we offer this treatment after tinkering with prescriptions and diet. I have a team of specialized hypnotherapists who work with me. Last year, we reported that of 1,000 people with hard-to-treat IBS, 76% experienced a positive effect with hypnotherapy, with symptom severity reduced by half (V. Miller et al. Aliment. Pharmacol. Ther. 41, 844–855; 2015). This study adds to a catalogue of more than two dozen papers that we have published showing that hypnotherapy has a positive effect for people with IBS.

Doesn't the use of hypnotherapy reinforce the idea that IBS is all in the mind?

Not at all. This isn't some sort of mind-control stage hypnotism. Gut-focused hypnotherapy, as we call it, is about inducing a state of deep relaxation and teaching people to take control of their very real, physiological symptoms. Hypnosis has been shown to reduce symptoms such as gastrointestinal sensitivity, the strength of muscular contractions in the gut and gastric-acid secretion in people with IBS. We use imagery. If someone feels bloated, we might ask them, under hypnosis, to imagine a balloon being deflated. If someone is constipated, we might ask them to visualize a river flowing slowly and then speed it up. The hypnotherapists at the centre leave patients with post-hypnotic suggestions. If the patients start to feel pain, for example, the simple act of laying their own hands on their belly should help to ease it. We're even starting to give hypnotherapy through Skype now.

Does this type of alternative therapy have any drawbacks?

As the technique becomes better known, more people are offering it as a treatment, and they sometimes do so without any qualifications or knowledge about IBS. That worries me. Some even claim to have been trained by me, but I've never met them. We're giving hypnotherapy a tremendous reputation that charlatans can live off.

What other treatments for IBS are there in the pipeline?

We're hoping to run a trial for faecal microbial transplants in the neurogastroenterology unit next year. Some people with IBS are thought to have an imbalance in their gut microbiota (see page S104). Wipe out that community of microbes and replace it with a healthy cocktail of organisms, the argument goes, and IBS may improve. In the United States, there are a few anecdotal reports of people with IBS whose symptoms have improved after faecal transplants, so we think it is worth trying. We're still very much at the formative stage and have yet to apply for ethical approval. My fear, however, is that we may be rejected because regulators regard IBS as a trivial disorder.

What's your assessment of the future of understanding and treating IBS?

I'm very gloomy about the future. IBS is the most common gastrointestinal disorder, and yet it is still heavily stigmatized. Patients feel that they get brushed off by the medical community, which considers IBS to be a mild, non-life-threatening condition. Research funding is hard to come by, and regulators are reticent to fund trials for therapies, because it is 'only IBS'. But IBS does kill people; they take their own lives. That it's only IBS is a dangerous misperception that has to change.

My hospital has dozens of respiratory physicians, cardiologists and all sorts of other specialists, but just one IBS specialist — me. I worry about what will happen when I, and others like me, retire. Two of the five hypnotherapists I work with have retired and are not being replaced. Young gastroenterologists don't want to do what I do — they want to investigate people with endoscopes. What I do mainly involves listening to people and encouraging them, by a process of trial and error, to manage their condition. I am usually able to help them — help them to leave the house, help them to return to work and help them to get their life back. I hope that this kind of approach is able to continue in the future, because it is amazing how often it works. Footnote 1Footnote 2