Airing Pain: 146 Irritable Bowel Syndrome & Inflammatory Bowel Disease

First broadcast 09/10/2024

Listen to Airing Pain #146

Edition features:

Dr David Bulmer, Associate Professor at Cambridge University, specialising in visceral pain and gastrointestinal disease, with a special interest in IBS, IBD, and pain.

Professor Rona Moss-Morris, Professor of Psychology as Applied to Medicine and Head of the Department of Psychology at the Institute of Psychology, Psychiatry and Neuroscience, King’s College London. Lead for Digital Therapies at the NIHR Maudsley Biomedical Research Centre. She has a special interest in factors that affect symptom experience and adjusting to chronic medical conditions.

The edition is presented and produced by Paul Evans. The interviews were recorded at the British Pain Society’s Annual Scientific Meeting, 2024.

Transcript begins

Paul Evans: This is Airing Pain, a programme brought to you by Pain Concern, the UK charity providing information and support for those of us living with pain, our family and supporters and the health professionals who care for us. I'm Paul Evans.

Rona Moss-Morris: If you have a condition like Inflammatory Bowel Disease, people assume that the pain is just related to the inflammation and the disease. And we have quite a lot of work now to show that at least around 40% of people continue to experience symptoms when the disease has remitted and there is no evidence of inflammation.

David Bulmer: People have done lots of genetic work and identified a number of genetic mutations that are common in IBD patients. Whereas, in IBS the very latest research suggests that actually it’s a localised allergy specific to the gut.

Moss-Morris: “Your disease is actually well controlled at the moment and so you don’t need to worry about the symptoms.” Now if you’ve got very debilitating, distressing and uncomfortable symptoms that are stopping you doing things, you worry.

Evans: Irritable Bowel Syndrome and Inflammatory Bowel Disorder – IBS and IBD – are two conditions affecting the gut. IBS is the most common disorder of the digestive system and IBD is a term used for a group of digestive conditions, the most common of which are Crohn’s Disease and Ulcerative Colitis. Each condition comes with its own set of issues, but common to both is pain.

So, what separates these outwardly similar sounding conditions? David Bulmer is Associate Professor of the Department of Pharmacology at the University of Cambridge. He’s a research scientist in the field of visceral pain – that’s pain from the gut – and for the past two decades he’s been researching the causes of pain in conditions like IBS and IBD.

Bulmer: They sound very similar but they’re not the same thing. So Inflammatory Bowel Disease is an autoimmune condition, like arthritis, and the gut becomes very inflamed. So, in IBD it’s a bit more obvious what’s causing the pain.

People may be more familiar with IBS – Irritable Bowel Syndrome – and the difference with IBS is that there’s no clear change, other than the pain, in the appearance of the bowel so the patients undergo, you know, lots of investigations to confirm that they have no disease – yet, obviously, they have pain.

Evans: What are the differences in how the patient experiences these conditions?

Bulmer: The actual experience may be quite similar. And certainly my dad was diagnosed with Inflammatory Bowel Disease quite recently but was told, you know, for a long time that he probably just had IBS. Because both conditions present with pain but also with disordered gut motility – and that just basically means you become constipated or, you know, you have diarrhoea and go to the toilet a lot. The key difference is in the underlying cause. In IBD it’s thought to be an autoimmune condition and the immune cells attack the gut. Whereas in IBS it looks to be more like a localised allergy – and that only occurs when it’s sort of challenged. That creates a lot of problems for the patients; so if they go to the doctor and that isn’t currently happening there’s nothing really to see. But the next day, you know, there may well be an attack or a response. So, if you are not looking at the right time, you see nothing.

So, an analogy I always quite liked was: if you can imagine if you stand on a bridge over a motorway and look down then the chances are there wouldn’t be a car and you might conclude there’s no cars on the motorway. But if you look down the motorway you’ll see there is, in fact, lots of cars on the motorway and I think IBS is a bit like that.

Evans: You said that IBS may be an allergy issue, but IBD is an autoimmune issue.

Bulmer: Yes. Yes.

Evans: What’s the difference?

Bulmer: So, in IBD, you know, it tends to be a familial condition. People have done lots of genetic work and identified a number of genetic mutations that are common in IBD patients. Whereas in IBS the very latest research suggests that actually it’s a localised allergy, specific to the gut.

So, there was a fantastic study from a group in Leuven last year, a clinician called Guy Boeckxstaens. And what Guy’s group was able to show is that, if they put a food allergen on the tip of an endoscope that they inserted into the gut, they could trigger a localised allergic response. But the patients had no response to that trigger if you applied it to the skin in a conventional allergy test.

So, they don’t have a food allergy, per se, and that would be tested in the skin. But actually, within the gut, there’s a localised allergic response that we were just missing, really. I suppose it’s a bit like comparing hayfever, you know, with something like psoriasis. They’re both things that are triggered by the immune system but there’s different immune cells involved. The cells involved in psoriasis tend to be more destructive or aggressive whereas with hayfever, you know, you get a runny nose.

Evans: So, I guess, if it’s a localised allergy in the gut...

Bulmer: Yup.

Evans: ...finding out what that allergy is – problem solved?

Bulmer: Yes, for that group of patients. Certainly, for a lot of these conditions which affect a lot of people there’s a danger we lump together people based on their symptoms and assume it’s the same thing. So certainly for a sub-group of patients that is going to be super important and it probably will be, as you say, be ‘problem solved’. And certainly there’s data out there on, you know, antihistamines showing efficacy in patients and drugs that stabilise an immune cell called the ‘mast’ cell, which is thought to be at the heart of allergic responses. So, to some degree, that’s true.

Evans: Tell me if I’m wrong here – some antidepressants are used for people with IBS?

Bulmer: The data there is mixed but there was a very good study done recently by a group in Leeds that showed that a specific antidepressant called amitriptyline is effective in a sub-group of IBS patients. Now the interesting thing about amitriptyline is it’s an old drug and it has effects against multiple targets in the body, one of which is the histamine receptor. So, you know, certainly one of the questions I would ask is whether amitriptyline is working as an antihistamine rather than as an antidepressant. And, in that study, the dose of amitriptyline is low and lower than what seems to be its effect as an antidepressant. I’m of the opinion that some of that efficacy is coming from its antihistamine actions for sure.

Evans: So, that’s IBS – Irritable Bowel Syndrome. IBD – how is that treated?

Bulmer: An area of great success actually, over the last 20 years, so typically that will be treated with immunosuppressives so it’s, you know, common to start patients, perhaps, on steroids as an acute treatment to bring the inflammation under control. More recently we’ve had this explosion in the biological treatments for autoimmune conditions and the anti TNFs, I think, were first shown to work. So, it’s a drug that targets the molecules that signal between immune cells, called cytokines, and they’ve been a genuine revolution in the treatment of IBD. So, there’s now a very wide palette of effective anti-cytokine treatments.

So, in terms of, you know, controlling the inflammation in Inflammatory Bowel Disease there’s been great progress. And I think, increasingly, that the sort of call from the patients is that the pain is not necessarily being treated as well. You know, we shouldn’t see that as a failure – it’s just an indication of what we can do to improve things. And I think if we put as much attention and focus on treating that as we have with the inflammatory disease, which I think was the priority – it’s a serious condition, you know, people were going for surgery because of the inflammation in the bowel and that’s been greatly reduced – so that’s the priority. But I think if we were to put the same focus on treating pain then we would crack that nut as well.

So, we’re very interested in what causes pain during the active inflammation and we think the same cytokines are important. Some of them are important in pain and inflammation but we think some of them are more important in pain than inflammation. So, they might be the ones we’re not targeting at the moment which is why some of the patients are experiencing pain despite an improvement in their underlying condition.

What’s particularly challenging, I think, in IBD is how do you treat pain when the patient is then in remission from the sort of primary inflammatory disease and, again, there’s a lot of patient advocacy to deal with those conditions. And that’s a very much understudied area. So there’s a feeling that it’s similar to IBS but there’s no reason for it to be similar to IBS, if that makes sense. The only sort of similarity is that the bowel now looks normal but the patient is still in pain. You know, whether it’s the same condition or not, I think, is something that needs to be considered. So, I think there’s a temptation to see it as something that can be treated with the treatments for IBS and, therefore, we don’t need to do any work on it – but that’s not true.

Evans: It’s something that’s occurred, well several times, from people I’ve been speaking to at this British Pain Society Conference. There can be a failure of professionals in that, yes, we’ve cured the condition but the patient is still in pain. Job done, but…

Bulmer: Yes, it feels intuitively incomplete doesn’t it? You know, it’s kind of if you got the car back from the garage and, you know, we’d fixed the problem with the tyres but the windscreen wipers still weren’t working, you would want them to fix the windscreen wipers as well [laughs].

So I can understand from a clinical perspective that the initial goal is to treat the more – and you have to be careful with the word ‘serious’ because pain is a serious problem but, you know – the thing that’s going to cause the greatest damage to your body, that might be irreversible, first.

Evans: So, thinking of the patient experience, somebody experiencing the symptoms one of these two conditions, starting out on their pain journey in primary care with their GP – what should they be asking their practitioner? And, in fact, what should the GP be asking them, to differentiate between the two?

Bulmer: I think the clinicians are very, very switched on to these issues and they are very aware of the literature. I mean my advice would be to engage in that dialogue with the clinician – I mean certainly in IBD at the moment the latest treatments at the clinical trials are including pain as a secondary end point because clinicians, scientists and companies alike recognise the importance of meeting that milestone.

In terms of IBS there is an appreciation, as you mentioned, of drugs like amitriptyline more widely now that they can provide some efficacy for some patients, there’s a growing appreciation of, perhaps, the role of the antihistamines, but also the dietary interventions with the low FODMAP diet which is a restriction diet. And it’s not a diet you can go on for a long period of time. There’s a temptation to see it as excluding foods that you may have an adverse reaction to but, what’s happening when you exclude these foods, is it’s depriving the so called ‘bad bacteria’ in the gut of a fuel source and you only go on the diet for a relatively short period of time. But it allows those levels to reduce, the good bacteria to sort of grow and dominate again and it resets your microbiome and that coincides with a reduction in symptoms.

Evans: The microbiome is very... “fashionable” is the wrong word, but people do need to talk to their doctors before trying any of these things.

Bulmer: You know, a low FODMAP diet is not something you that should be taking over a long period of time. There’s lots of very important nutrients and vitamins that you’ll get from those types of food. that’s why I’m hesitant to use the word “diet”, really – it’s an intervention, I think. But, nevertheless, it sort of points to the microbiome as a causative factor which intuitively makes a lot of sense in the gut. It doesn’t seem like rocket science that these trillions of bacteria in the bowel may be contributing to events. You know how you then get out of that, whether it's through a regulation of the food you eat or through other more targeted mechanisms is something that’s only going to grow, as a field, in the future.

Evans: David Bulmer of the University of Cambridge.

Of course, not just for the FODMAP diet, I’ll remind you as I always do in every edition of Airing Pain, that whilst we in Pain Concern believe the information and opinions on Airing Pain are accurate and sound, based on the best judgments available – you should always consult your health professionals on any matter relating to your health and well-being. They're the only people who know you and your circumstances, and therefore the appropriate action to take on your behalf.

OK, let’s go back to that term ‘remission’ particularly as it’s applied to IBS or IBD.

Rona Moss-Morris is Professor of Psychology at King’s College London.

Moss-Morris: Even though the disease management has improved dramatically when you would be considered, perhaps biomedically, to be in remission – in other words there’s no evidence of inflammation and so forth – there’s a good, at least around 30 to 40% of people, who continue to experience – maybe not as extremely – but they will still experience a level of uncomfortable symptoms including pain, fatigue and urgency are the main three they experience.

Evans: I don’t understand how a disease can be considered ‘in remission’ if the patient is still experiencing discomfort or pain?

Moss-Morris : Yes, I think that’s a really good point. So, at the moment remission is, I guess, defined as “symptom free”. So, you’re quite right, then you would continue to say that, no, these people are not in remission. But because that’s then also assumed that your inflammation has gone, what it doesn’t explain is that what happens when the inflammation from all the biomarkers appears to be well controlled but you are still experiencing symptoms. And it’s those people who often might be told, “well actually you don’t need to worry because your disease is actually well controlled at the moment and so you don’t need to worry about the symptoms.”

Now if you’ve got very debilitating, distressing and uncomfortable symptoms that are stopping you doing things – you worry. Anybody would do that. So, because there isn’t anything routinely offered to those patients in terms of treatment that’s not a biomedical treatment, I think sometimes it’s easier just to say “you have irritable bowel-like symptoms” – is often what patients get told, you know – so, “at least you know your disease is well controlled so you don’t have to worry so much about that.”

So, I think it’s kind of a twofold thing. One is that there is the expectation that if you have a disease then it’s all driven by the disease and that there are not other factors which help maintain symptoms. The other fact is because we don’t have routinely good treatments to offer in that situation it’s very challenging for healthcare professionals. Because healthcare professionals want to talk about things that they can do things about.

Evans: This all makes sense to me as a patient. So, what are you, as a psychologist, telling the physicians here?

Moss-Morris: One of the things that I’ve been talking a little bit about is a clinical trial which we have yet to publish so I can’t expand on the results too much but we developed an intervention, based more on the principles of cognitive behavioural therapy and around managing all three symptoms: pain, fatigue and urgency. So quite often I think you often get a programme where you treat pain or you treat fatigue or you possibly treat incontinence urgency as three separate things – and actually when you’ve got the constellation of symptoms that’s not very efficient for people to do them. So we try to pull together some of the psychological factors that we know help maintain symptoms and design a programme based on that. And because of the challenges we have in the healthcare environment that we are currently working there are very few healthcare professionals. There are very few healthcare professionals trained in this particular approach too – so we designed a digital interactive programme, and we designed it in a way that that IBD nurses – so they’ve got a speciality in IBD – might be able to provide just some additional support alongside. But when we spoke to the IBD nurses they kind of said “well actually we’ve got these massive workloads already – how are you going to expect us to do this as well?”

So, based on the interviews we did with them, the person living with IBD would start the programme on their own, do the first session and then they would just have a half an hour call check-in with the IBD nurse that we had specially trained in the programme. And then they would just get a weekly message to find out how they’re progressing, the nurses could see some of what the person was doing.

So, we were trying to be pragmatic I guess. You know, as a psychologist would that be the way I would most like it delivered? No, I would love to offer everybody a trained CBT therapist to deliver that – that’s just not going to be possible. So our results showed that, overall, we had a large group of people, overall it didn’t seem to work. So that was the disappointing news. The, perhaps, more positive news was that people who had IBD, or Inflammatory Bowel Disease and they also had symptoms of Irritable Bowel Syndrome – in other words they were the people who probably had the worst symptoms, ongoing symptoms – they did seem to benefit. So we had what we call a ‘sub-group’ who seemed to benefit from the analysis. So I suspect maybe we recruited too broadly and it might only be a sub-group of people with more severe symptoms who are going to benefit from this approach.

Evans : CBT – Cognitive Behavioural Therapy?

Moss-Morris: That’s correct, yes.

Evans: Just explain what that is.

Moss-Morris: Firstly, I should say it’s not one thing. It’s a group of therapies that use particular methods or techniques. So people often think, you know, if somebody’s getting CBT, you’re treating their mental health. Well, that’s actually not true, it would be true if I’m using CBT for depression or CBT for anxiety and even then there’ll be very particular types of CBT. So, if you have generalised anxiety disorder or you have social phobia, the CBT is different.

So, when we talk about CBT in this context it’s CBT that has been designed specifically for managing symptoms in Inflammatory Bowel Disease. And so what we do is we look at the evidence of what are the factors that seem to be associated with higher levels of pain, fatigue and urgency in IBD. And there are certain ways of thinking about the symptoms and responding to the symptoms that seem to help perpetuate them. So after you’ve had that disease flare the symptoms are not settling down and some of that seems to be things like increased anxiety about your gut, so people who are more anxious about their gut and worrying so they’re thinking about it a lot more, people who just see the symptoms in a more negative light, certain behavioural patterns and particularly something that we’ve noticed across conditions where symptoms get maintained is what we call ‘boom or bust’ or ‘all or nothing behaviour’. And this is something a lot of us identify with, that kind of sense of when you’ve been feeling ill when you have a good day you often push yourself quite hard because you think “OK, I’m feeling good, I’m going to get all the things done that I haven’t managed to do”, and then what often happens, because you’ve pushed quite hard, is that the symptoms flare again and then people say “oh look here we go, back to square one, back to bed”.

And so that pattern actually becomes quite unhelpful over time. So, it’s addressing those factors – very specifically. And also, within that, looking also at mood because I think the more debilitating and uncomfortable your symptoms are, and if people have been dismissing it, you actually do get quite anxious and often quite down and depressed so we will also look at how to manage mood in the context of that as well.

Evans: So, you talk about the ‘pain cycle’?

Moss-Morris: It is a pain cycle but it’s kind of, I guess, not pain on its own; its pain, fatigue and urgency all together. And what we do in that programme is people can decide whether they want to focus more on one or the other so there’s general principles of all three and then people can then say, “well I’m going to focus more on my pain” or “I’m going to focus more on my fatigue” or “more on my urgency”. Because what happens is, even if you have all of them, you’ll have one that’s worrying you more quite often.

Evans: And, in simple terms, if you are worrying about what is happening, that feeds into the business and it gets worse and worse and worse? And you have to break that cycle. Am I right?

Moss-Morris: Yes, that’s exactly right. So, we talk a lot about vicious cycles, how do we break them and there are various different ways you can break them. And everybody’s cycle is slightly… well, not everybody’s completely different – but everybody has an individualised cycle so it won’t look exactly the same for everybody. So, when we build digital programmes like this we try and tailor them very specifically. We ask people lots of questions and then tailor the treatment according to what the issues might be for them specifically.

Evans: How does it work in practice? Or haven’t you got that far with it yet?

Moss-Morris: No, well, we haven’t got that far yet. So, what we would hope would happen in practice is that you would have some skilled healthcare professionals in this area who would be able to support programmes like this. That if you went to your gastroenterologist, to your IBD nurse, and you were struggling with symptoms – this could be offered as, you know, “we have this app, this is how it works.” Give them a bit of an explanation of why these things work – because I think the difficulty is sometimes if you offer a more behavioural approach people think, “oh you’re not taking this seriously, you don’t realise that these are very real physical symptoms”. So I think it has to go hand in hand with a really good explanation of why very real physical symptoms are made worse by these factors. I think if we could have a pathway like that, we would need the NHS to pay for these apps a bit like how they pay for drugs because, you know, they cost money to support and maintain. And then you would need a healthcare professional workforce to support them.

But I think we can do that quite efficiently. So that’s where we would like to land up but I think there’s quite a few hoops – quite a lot of hoops – to get to – before we get there.

Evans: I’d be surprised if there were too many barriers against doing that because apps are becoming the thing for sleep, for various conditions.

Moss-Morris: I think this is true, but we don’t have a pathway within the NHS for them. So, we have a lot of apps – not many evidence-based apps – so I think there’s a difference there. So, I think we need a national strategy to very carefully evaluate apps like we evaluate medicines. And I think that is happening; within NICE there is now a NICE HTA pathway, a NICE pathway which is evaluating what is the evidence-based apps. So we are starting to have that now.

The other thing is regulation because it absolutely needs to be regulated. But, actually, that’s a very costly and time-consuming process. So, it’s encouraging industry to pick these up, to go through all these processes, for people to go through the NICE processes. But even when people have gone through that, at the moment, the uptake within the NHS is not happening. So, you’re quite right, I think there’s an appetite for them but there’s not a structure for them. There’s quite a lot of reasons for that at the moment. So, you know, if you have a new pharmaceutical there’s a centralised process for that within NICE. You know, NICE will evaluate the drug and will say “the evidence and the cost effectiveness for this is good and the NHS is going to provide this for people”.

At the moment there isn’t that centralisation for digital products. So, if I say “I have this product” then I might have to go to the hospital, we’re in Nottingham at the moment, go to the hospital and say to the Trust: “I have this app that I think could work. Would you be prepared to procure it and buy it for your patients? This is the cost of it. You’ll need to train your healthcare professionals to deliver it...” etc, etc.

Now, in my experience, it’s taken us a year and a half with products to get a Trust to get to that point. Depending on the air we have about 220 Trusts so you can imagine the time and cost to set that up within the current structure. So we need some kind of centralisation of that, we need to maybe train a centralised pool of healthcare professionals who can support this across conditions – because it’s not only Inflammatory Bowel Disease, there are a lot of people with medical conditions who struggle with similar symptoms. So, there’s lots of structural barriers that I think we need to overcome.

Evans: The downside of digitisation is that you lose the personal touch.

Moss-Morris: Yes, that’s absolutely right and that’s why we are very adamant that we want products which are also healthcare professional supported, so that you have a combination. So you make the healthcare professional time more efficient but you’re not saying to the person, “here’s an app – off you go”. Because – you know, it’s a bit like if you are doing an exercise programme completely online versus you had a trainer that you checked in with every now and then... You know, they are different things – someone can actually correct you, you can have conversations if your problems are more complex than are being dealt with in the app, you can be escalated, you can be triaged up. So our vision with digital, I guess, is to have a stepped care approach. You might have the bottom care app which is just a simple app for somebody who is actually managing pretty well but would just like to learn some pointers. Then you have the healthcare professional supported app where you first have an initial consultation, they show you how to use the app. And that’s particularly important – we have a digital divide, you know, not everybody uses mobile phones to the same degree. We need some people who need support but then they also get regular check-ins to come and see how they are going.

For people with a very complex problem then actually we should be offering the one-to-one with a healthcare professional. So I don’t think digital should replace people, but I think it could certainly make something much more scalable where it can be offered to more people.

Evans: That’s Rona Moss-Morris, Professor of Psychology at King’s College, London.

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All the interviews for this edition of Airing Pain were recorded at the 2024 Annual Scientific Meeting of the British Pain Society at Nottingham University. Each year it’s a major platform for pain management professionals, researchers, clinicians and industry leaders to come together to exchange insights and explore the latest developments in the field of pain and we’re grateful to the British Pain Society for their support in providing facilities for us to record at these events.

Now to end this edition of Airing Pain I was just wondering what message Rona Moss-Morris, as a psychologist, was telling the delegates.

Moss-Morris: We need a move away from this very simplistic explanation of pain and other symptoms. I think we need to just routinely not have a simple message that remission equals a kind of lack of inflammation, lack of symptoms. I think we need to make it very clear that a good percentage of patients will continue to experience symptoms, less severe symptoms often, but even when they are in remission they will continue to experience them. I’d like to see a standardised scientific explanation for that, so that we can explain to people why they have symptoms in remission. Not just to say “oh it’s nothing to worry about” because actually these are very real symptoms. So we need an explanation for it and we are still building that up, I don’t think we have all the answers to understand that, but I think we have some answers.

And then I think we need routinely to offer treatments for those symptoms that are not based on biomedical treatments. It’s not that you stop the biomedical treatments, those are clearly needed to manage the disease but I think there are other things that we can do to help people manage symptoms better. But it’s just not something that is ever, well mostly, offered to people.

End

Transcribed by FCL

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