Should we ban the term ‘IBS’?

Today I wanted to talk about one of the most frequently heard terms in the gut-health world: IBS. IBS is something I’ve written extensively about: whether talking about my own diagnosis journey (where IBS was actually Crohn’s); offering advice on getting the proper testing done or sharing my thoughts on the low fodmap diet. But today I want to consider the term IBS itself and ask, is it really helpful? And should we think about getting rid of it altogether to truly help support those with gut health issues?

Is IBS really a diagnosis?

Before I begin, this blog post is in no way aimed to be detrimental to those with IBS. I completely understand how debilitating the condition can be and am in no way suggesting symptoms are not real. Instead, I’m just considering how useful the term really is for us.

My first issue is that one thing I’m seeing a lot of lately is various people on my timeline posting  that they have been ‘diagnosed with IBS’ in the vein, of ‘tests have shown IBS’ or ‘now I have answers.’ I don’t expect everyone to know this (because it’s a doctors jobs to inform patients) but I just need to point out…

  • IBS is not something that can be tested for. It is a diagnosis of exclusion which means it’s only diagnosed when other things ruled out (more on what you need to be tested for here) There are some studies that do indeed show those with IBS differ from the general population but these would not be visible on any colonoscopy or blood test. Therefore, there’s nothing IBS would ‘show up on’. IBS is a conclusion that drawn upon and not diagnosed by blood test. Rather your doctor is telling you’ you don’t have anything else.’ If they’ve only done a blood test, then this is not a good enough conclusion to draw. At the very least you should be offered a faecal calprotectin test (a specific poo test that tests inflammation)

 

  • Really, if you’ve been diagnosed with IBS, you don’t have any answers. You do, of course, have some vital reassurance it’s not something more serious but what your doctor is essentially telling you is…. 
    • I don’t know what’s wrong with you- so you could look at your diet and see if you have issues with gluten, dairy, FODMAPS or-if you’re really unlucky-all 3.
    • Alternatively, you could do all that but you might need to look at your lifestyle-your sleep, your stress levels etc.
    • Finally, you might do all that but still feel crap-and that’s just bloody unlucky. But look on the bright side, you don’t have a serious illness so off you go!
  • An individuals journey with IBS does not end at diagnosis and I want to point out how it’s still important to try to get to know your body. 

Does the label make us get too comfortable with our symptoms?

                                                 

      via GIPHY

Imagine if you had a really painful knee (I say this because weirdly I woke up with one!). You go to the doctor, you get referred for an X-Ray and still, nothing shows. Your doctor is no further forward, so might look at whether it could be linked to a nutrition deficiency or autoimmune conditions (I’m started to regret this knee example as I have no idea what it could actually be a symptom of!).

He explains that it’s obviously nothing serious like a breakage. Perhaps you go away and with the warm weather and increased summer exercise, have a few good months. But then one day, it gets worse and worse and you’re on painkillers constantly. You go to your doctor determined to get to the bottom of it.

However, because IBS gives us a label, we can, in a way, accept it quicker. Therefore, when symptoms flare, we’ll just say ‘oh it’s IBS.’ Because we have a name for it, legitimising it, and I fear we stop searching.

My main worry is people develop different symptoms and it’s still explained away as their IBS. Patients should be taught to treat their gut as everchanging-because actually that sudden flare could be a serious bout of food poisoning, or gastroenteritis or perhaps something even more sinister. I can’t explain HOW MANY different NEW symptoms my doctor would say was my ‘IBS’ before I had Crohn’s; it’s such an umbrella label that you can almost explain anything away as having IBS.

It also stops us trying to find the problems. What if the IBS was lactose intolerance? or SIBO? Some individuals might think they’ve already got their diagnosis so stop searching and accept their symptoms without getting to the bottom of them.

Unless we can see it, we really have no bloody clue

                                                       

via GIPHY

About a year ago, I was having really bad symptoms. My Crohn’s tests all came back normal so I went to see my nurse. “Sounds like IBS” she said to me.

This basically translated as “your Crohn’s isn’t flaring so I don’t care.”

She had no way of looking into my intestines so how could she just throw out a diagnosis like that? I realised she used it simply as a tool to reassure me; to ‘explain away’ how I was feeling. It was only when I had an MRI that my Crohn’s was active; so I was right-and the term hadn’t been helpful at all. It had been ‘false reassurance’

We often use IBS as guesswork. Of course, I’m not suggesting we all get an MRI or colonoscopy of our insides every time we’re struggling. But just to be aware that as a definition, it can really only go so far in telling us what could be going on. That’s why I always encourage people to not accept an IBS diagnosis until you’ve had a stool inflammation test at the very least (but really you should be pushing for a colonoscopy). Blood tests are NOT accurate. I know this because I have seen a report on my insides a few months ago confirming IBD activity yet but my blood tests have not changed in the slightest and are perfectly healthy! 

When IBS is useful

I do appreciate there is some research on how IBS patients differ (e.g. in terms of specifics of their gut and pain thresholds) so it’s certainly not just a nonsense term. It’s also incredibly helpful at helping us communicate. Imagine you’re cancelling plans or explaining why you’re on a certain diet. ‘I have IBS’ is a lot more acceptable to ‘I can’t stop going to the toilet and to be honest my stomach is making some freaky sounds that I have no idea about.’ Because of the term, we’re much more able to communicate and feel confident; and that’s a good thing!

However, on the whole; I still feel IBS can be a problematic term in the medical community. We should absolutely use it to communicate symptoms but it is NOT a complete diagnosis all by itself- it is an acknowledgement that you don’t have something more serious and hopefully a stepping stone to help you get to grips with your gut. I’d love to hear your thoughts, however: is the term IBS helpful or harmful to you? Should we ban it?

Useful Further Reading

Got IBS? Here’s 6 things you need to know!

Think you might have IBD? Here’s what you need to do

 

6 Comments

  1. Emma
    July 10, 2018 / 6:22 pm

    As an IBS sufferer myself, I partly agree but sometimes there just aren’t any answers. Just because one has symptoms does not mean there HAS to be some organic, identifiable cause. Lots of sufferers go through so many different tests but nothing shows up and so it is not implausible to conclude that the functionality of the gut has gone awry (something not necessarily identifiable). The brain-gut axis is a very interesting area of research that could well be implicated in the syndrome and can explain why stress sometimes aggravates gut symptoms. Also, it is sometimes easier (and effectively the same) to say ‘IBS’ rather than ‘I have intolerances to dairy and gluten’. Intolerances can result in an irritable bowel.

    I definitely understand where you’re coming from in that you shouldn’t be complacent and should search for more detailed answers but after a while, IBS is an acceptable conclusion as it is an umbrella term that could arguably cover what really may be wrong anyway eg one or multiple food intolerances and it also covers other factors which may contribute like stress .

    • Healthyglobetrotting
      Author
      July 13, 2018 / 1:11 pm

      Thanks Emma- some very interesting points! xxx

  2. July 13, 2018 / 12:06 pm

    So true – I think unfortunately the medical profession can lean on non-diagnosable conditions like IBS. For some patients that might mean they don’t get the tests, diagnosis & treatments they need 🙁

    • Healthyglobetrotting
      Author
      July 13, 2018 / 1:11 pm

      yep this is what can be so frustrating!

  3. Frances Radmore
    July 18, 2018 / 7:33 pm

    I found this article really helpful and also reassuring. I’ve been suffering for years. Excruciating stomach pain, diarrhoea, then constipation, bloating, frightening weight loss at times and feeling awful. Intermingled with periods of normality. I had a colonoscopy 2 years ago and the consultant told me they found no nasties and it was probably a wheat intolerance and a touch of IBS. (I might add my mother had just died the year before from colon cancer) and that now I knew that i’d probably feel a lot better, implying half of it was in my head. Well I went gluten free and did feel better and when ever I had a ‘flare up’, I convinced myself I must have accidentally eaten wheat. Until this year when it got really bad again, I dropped over a stone and felt crap. Two bouts of unrelenting pain and diarrhoea lasting 6 weeks each time. I’m now seeing a different consultant and I had an MRI yesterday. Still don’t have answers yet but at least he hasn’t made me feel like some kind of hysterical child. He was very honest and frowned at the previous consultants report, telling me, it might be IBS but we won’t know that until we’ve thoroughly tested and ruled out anything else. Fingers crossed it’s nothing too terrible but your article has given me faith that I’ve done the right thing going back and asking for help. So thank you.

  4. August 2, 2018 / 6:47 pm

    I have IBS-D… so frequent flyer to the bathroom. And this was odd enough that my doc tested me for everything under the sun. Also celiac and lactose intolerance. And nothing showed up. So it is IBS but Sometimes it is a migraine, which can cause the same digestive issues. And I often do not know which it is, just that I need to stay hydrated and take Imodium. But I also noted, myself, that I always flared up after eating. And I researched it and found some info on the issue and learned I cannot drink fluids with a meal or it can cause a massive reaction. And that wasn’t through IBS research it was on symptom research. And that is called gastric emptying, dumping syndrome … so an IBS diagnosis shouldn’t stop us from looking for answers. Because just that one change really helped me out. I also do the recommended avoiding sugar, but to be honest, sugar makes me nauseated anyway. I have no idea if it is IBS-D with gastric emptying or just the gastric emptying because the changes I made have helped so much I rarely get a flare now. Except, well, certain migraines.

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