Many sufferers of IBS feel fobbed off by their doctor’s excuse “it’s just IBS”. Indeed, this is such an issue that UK charity the IBS Network actually started a whole campaign around the hashtag #itsnotjustibs.
These offhand clinical remarks obviously have repercussions for how seriously patients feel their doctors take their symptoms. And even if well-meaning medics appreciate there’s a problem, there’s a risk that they instinctively prescribe the most common/useful drug based on their clinical experience rather than take the time to fully understand the circumstances around each patient’s condition.
This isn’t entirely the fault of clinicians. Lack of resources and tight appointment schedules sometimes don’t afford doctors the luxury of time to really explore the patient’s history. However, over the last two years that I have been following blogs, the scientific literature and IBS support forums it has occurred to me that IBS isn’t a diagnosis; it’s a symptom, or mixture of symptoms, that deserve to be regarded as such. If possible, we need to stop treating the symptoms and try and find the cause.
And there are plenty of possible causes. Approximately 10 percent of IBS cases are linked to a bout of gastroenteritis and the recently marketed IBSChek blood test claims to identify these patients. Sadly, a positive diagnosis of post-infection IBS (PI-IBS) doesn’t help the patient at the moment. There are no published clinical trials I am aware of that specifically look at the best treatments for PI-IBS. Maybe a high-intensity course of antibiotics could work (there is some evidence of this from trials of rifaximin for instance). Alternatively, a course of pro- or prebiotics may benefit these patients. At the moment we don’t know and many doctors may not be able or willing to prescribe drugs experimentally without them being licensed or approved for use.
Another significant cause of IBS is likely to be anxiety and stress, especially those brought on by trauma or other life-altering events. To many patients this reasoning is close to sacrilege. We hate to hear that IBS is all in our heads. It isn’t all in our heads, but that doesn’t mean the cause isn’t. I have read some very compelling articles on the link between IBS and anxiety and even coaxed anxiety out of people as a possible cause of their IBS when responding to posts on forums. There are also published studies showing that therapy has improved patients’ IBS symptoms.
Personally, I believe that anxiety was probably the main cause of my IBS but it was something I had to discover for myself. It was never anything the four separate GPs I saw over the years suggested or tried to explore. Similarly, treating anxiety isn’t as simple as telling someone to make a lifestyle change, which is often a challenge in itself! In fact, this could even be counter-productive. In an effort to calm my IBS, I physically forced myself to do less. However, this was counterproductive. It left me with more time to subconsciously dwell on my anxieties. My IBS got worse, I became depressed and began having suicidal thoughts.
It’s not clear whether my IBS will clear up entirely once I’ve resolved my anxiety and it is very possible that there are other physiological or microbiological changes linked-to or independent of anxiety that could also play a role. And it certainly might explain why interventions like the low FODMAP diet haven’t been as helpful for me as it has been for others. But I digress…
The growing interest in understanding the microbiome may have significant benefits for the IBS community. There are already several studies that show correlations between patients’ microflora and their predominant IBS symptom. What causes these potential imbalances is unknown, as is how to address them. But being better able to characterise someone’s IBS is the first stage in identifying effective treatments and trials, and we’re nowhere near that at the moment.
So, IBS could be a symptom of anxiety, previous infection or a microbial imbalance. However, from reading various personal experiences online, and speaking to various friends with IBS, these are just a small number of the possible causes that don’t seem to be explored often enough by doctors. Complex food intolerances, bowel obstructions, rare infections (of which there can be other symptoms if you look closely enough), hormonal imbalances, secretory or absorption disorders, specific genetic mutations are all things I’ve read as being responsible for a patient’s irritable bowel symptoms. Yet these are seemingly explored very infrequently, if the doctor is aware of them at all, and the patient can be left with ineffective guidance on how to manage their condition, or how their treatment can be adapted, leading to the sense of helplessness and lack of support.
In summary, IBS isn’t a diagnosis, it is a symptom of numerous underlying genetic, microbiological, physiological or psychological disorders that we need to get better at identifying in order to provide the most appropriate treatment. The current treatment regimes may work for some sufferers but possibly because they treat the symptoms rather than the underlying cause. And for the foreseeable future it might just be necessary for patients and doctors to experiment with the available medications finding something that works. But even if something does work, intervention shouldn’t stop there. Whether a treatment is successful or not, clinicians should work with their patients to explore why that’s the case and use this as part of the diagnostic toolkit.
Patient J 