IBS Impact is pleased to welcome a guest blogger this week for IBS Awareness Month. We thank him for his time and important insights.
Jon S. has IBS and lives in the United Kingdom. He has a degree in biochemistry and now works as an analyst in the tech sector. In his spare time, Jon follows developments in the science behind, and treatments for, IBS. He shares this knowledge via his blog (patientj.wordpress.com) and via support to IBS sufferers on Health Unlocked.
For many sufferers, despite the international Rome diagnostic criteria in existence since 1991, (see page 889, section C1 at link) IBS still feels like a diagnosis of exclusion: we have a series of digestive problems but blood or other tests rule out anything more ‘serious’. Many of us initially don’t understand the concept of functional disorders like IBS or how they are real but do not show up on currently available tests. As a result, we find ourselves placed in what appears to be a catch-all umbrella term for unexplained bowel symptoms: irritable bowel syndrome. This situation is far from ideal: it can make patients feel their condition isn’t being taken seriously, and frustrated when alternative diagnoses aren’t considered, or even known about.
The good news is that more is being understood about IBS every year, and the Internet and social media are useful ways for sufferers to learn more about their illness and discover alternative treatments or problems their own doctors might not know about. But we’re still a long way off fully applying this learning in the clinical environment. Although the updated Rome IV is due out next month, many other diagnostic tools aren’t available in the clinical setting yet, we still don’t know what some of the causes are, and because of the way medicines are licensed and approved, it may take time for some experimental treatments to be available for use. It’s also clear that not all frontline doctors are fully abreast of even the more recent treatments for IBS.
So, in the meantime, what can be done to help improve the treatment and management of IBS? I believe there are changes we can make as patients, clinicians and institutionally that will benefit everyone. However, these changes require humility and the willingness to want to improve to have the best chances of success.
First of all, we as patients need to understand and accept that there isn’t a silver bullet for IBS. Medical and scientific professions don’t understand all the causes for IBS, and even when we do have evidence of a trigger, we don’t necessarily understand the underlying biochemical and physiological reasons for how the triggers give rise to symptoms, or even how to treat it.
For this reason, treatment of IBS is a process of trial and error. And often error. It can take several months or years to discover the right treatment, or combination of treatments, to combat an individual’s symptoms. And as there is no magic pill, we also need to look at our own lifestyles and accept that these, too, could be contributing to our problems. Some patients find that poor diet and/or endemic stress and anxiety in general or triggered by life events can exacerbate IBS. This isn’t always the case, and isn’t necessarily easy to change, but in my experience it is one of the things sufferers are reluctant to address.
We should also be alive to the fact that we might not be able to treat IBS at all. A significant proportion of patients (20-25 percent) will find no improvement through managing their stress and altering their diet. And even if this is possible, for many it will still require the long-term management of our symptoms, making life as tolerable as possible, but not necessarily clearing it up altogether. In this way, IBS is a silent disability, but something we can hope to change over time through things like IBS Awareness Month and political campaigning.
And we can also do lots to understand our symptoms, too. In the UK, pages like the NHS Choices’ website, the IBS Network and NICE Clinical Guidelines provide good starting points on IBS management and clinical best practice, the majority of which will be applicable regardless of which country you live in. This doesn’t mean we shouldn’t trust our doctors. Believe it or not, the majority of the time the doctor is probably right: it is IBS as opposed to anything more serious. However, I feel that sometimes we feel let down by the medical profession when they don’t seem to support us, or when the treatments don’t work. We can only overcome this by understanding more about our condition and working with our doctors to explore our symptoms more.
As in any profession there are excellent doctors and some pretty bad ones and then the whole range of skills and competencies in between. Indeed, partly because I have several friends who are doctors, I have a considerable amount of appreciation for the profession. And I think that anyone who has worked in a high-pressure environment where the policies, procedures and technologies are constantly changing can appreciate how difficult it must be for the average family doctor to amass and apply a growing and shifting body of knowledge and best practice.
All the same, I hear too many stories of patients who feel like their doctor doesn’t care or understand, or people who’ve reached their wit’s end because nothing appears to be working. I feel these are both cases where doctors have failed: if doctors have lost their desire to care for people, they have failed their patients; if they have lost their passion to solve medical problems, then they have failed themselves.
That said, I think there are a few things that doctors can do to better support their patients. To start with, how would you adapt your approach if you considered IBS more a symptom than a diagnosis? Would this make you more willing to look at differential diagnoses or change how you give advice?
Moving on, there are a range of treatments available but not every treatment will work for every patient. After I’d seen four different GPs, only the last one explained that they’d like me to try one drug first and then if that didn’t work we could review later and either change dose or drug. But why had it taken four doctors before one said “this drug might not work but I want to start you on the drug with the fewest side effects…”? We’d like you to work with us but it sometimes sounds like we’re being given a cream for a rash that will go away in a couple of weeks.
Work with your patients to try and help us understand the underlying cause(s) of our IBS and the current research understanding of what it is and what can be done to help us. Clinical standards will vary from country to country but I suspect, Rome criteria aside, most will advocate at least some blood tests to rule out other disorders. Some patients would benefit (or just like to know) what any tests looked for and found; it may also help very anxious patients understand why you are ruling out more life-threatening conditions. If tests aren’t indicated or helpful, which criteria or considerations are being used and why?
We appreciate that you’re busy but please be patient with us and take some time to explore our own theories of what might be behind our IBS. One of the most frustrating things for sufferers is to be told that such-and-such a condition is unlikely, but then do no tests to prove or disprove that. I accept that some diagnostic tests are too dangerous or expensive but for an enigmatic illness like IBS, any number of things could be causing the symptoms and we need your help to find out. We need more patient-scientists but that is only possible with the support of more-knowledgeable professionals. We have more time on our hands to explore our symptoms and we want to get to the bottom of them (if you’ll pardon the pun). I’m not saying that every wacky thing out there on the Internet should be given credence but talk us through your reasoning, explore alternative diagnoses, and agree on a strategy with us to help rule other factors in or out and pursue treatment.
Finally, please update yourselves on the latest clinical guidelines as well. I have heard stories about, and experienced, doctors who have not conducted appropriate tests or advised vastly outdated treatments. And if you are still at a loss, please consider sending us to a specialist, especially if together we have tried several treatments and tests and are still none the wiser.
Ultimately, institutional changes will have the biggest impact on patients and doctors alike.
First of all, we need more cost-effective ways to help patients manage their IBS. Is it sensible to use up a doctor’s time for routine management of an IBS case? In the UK, the IBS Network advocates the training of specialist nurses in the NHS to support IBS sufferers, a suggestion that would no doubt benefit sufferers in other countries as well.
I would go one step further and give pharmacists a greater role in managing IBS, too. Pharmacists will already be aware of the various drugs licensed for treating the condition and their contraindications; they may even spot how a patient’s existing cocktail of drugs might be contributing to or causing IBS symptoms. In other words they seem ideally placed to work with patients to discover the most suitable drug(s) to treat their symptoms. We would also provide them with additional training to know when to recommend a dietician or alternative therapies.
I would also like to see institutions loosen the treatment guidelines for IBS. For instance, in the UK, the NICE advice is a useful starting point for managing and diagnosing IBS in patients but it potentially stops clinicians from using their scientific and medical judgement to request alternative tests or try out certain treatments with their patients (with the patient’s consent of course). We don’t know what causes IBS so provided a drug is safe to give and is being given for a clinical purpose, what is wrong with doctors being able to prescribe something to see if it helps a patient?
In short, there are several ways we can improve the diagnosis, management and treatment of IBS. Things start with small changes in how we as patients approach our discussions with doctors, and doctors’ willingness to engage in a conversation with patients. These will go someway to improving the approach to managing IBS. However, both patients and doctors are likely to be held back unless there are some concomitant institutional changes made as well. Policy changes aren’t always easy, and there can sometimes be reluctance in various quarters to implement change. But, at the end of the day, a condition that affects up to 20 percent of the population needs better solutions to manage limited resources in the best way possible for both patients and practitioners alike.