Celebrating 10 years of Irritable Bowel Syndrome (IBS)

It’s been 10 years since everything first went south between me and my digestive system. It’s been a wild ride and I’ve learnt a lot. I’ve also noticed a lot more friends and family developing tummy problems in the last couple of years, and so I’ve decided to reflect a bit on what I’ve learnt from dealing with this confusing, not very well understood issue for the last 10 years.

Warning: This is all in the vein of ‘I think people should talk more about this’ but that comes at the cost of, it might be TMI (Too much information) for some people — so stop reading now if you’re not ready for that.

What is life like with IBS?

I guess we should start with the basics, what are my symptoms? It’s worth saying from the outset that IBS is the name given to an illness related to abdominal discomfort and bowel symptoms that cannot be explained by any other disease. For this reason, symptoms can vary quite a lot from person to person. I’ve listed some common (but not exhaustive) symptoms below. For me, the most tricky issue is around urgency, which causes lots of anxiety when moving from place to place.

You can also end up with a bunch of related symptoms such as headaches, muscle pains, back pain, poor urine retention, anxiety etc. All of which I either have or have had at some point.

In most situations, the fear is worse than the reality. I can almost always find a public toilet. In 10 years, I have had very few serious incidents and this gives me some degree of confidence.

I do go to the bathroom for more than just peeing quite a lot more than the average person — probably 3–6 times a day, often 10–15 minutes each time. The most annoying part of this is the amount of time it takes up in my life. It’s also something that doesn’t really go away. As long as I am alive, it will be there, which can be very tiring. I do, however, feel very lucky that I don’t have any real pain.

Weirdly, by the afternoon (often 3pm), I’m fine and I get to enjoy 8ish hours of a normal tummy life everyday.

Anxiety tends to make it worse. If, for example, I have a big meeting, or I am stressed about other things going on in my life, it’s worse. On the flip side, it tends to be better on holiday and at the weekend. It is definitely a psycho-physiological issue.

FODMAPS and the the future of IBS, a move towards personalised management

When I first had problems in my early 20s, I went to the GP and had all of the tests under the sun. After ruling out any of the known and/or serious conditions, I was left with diagnosis of IBS and a pamphlet that said ‘Try the Low-FODMAP Diet’.

The FODMAP diet is a very strange diet that involves reducing high FODMAP food (which is basically most food — Google it for more info) for four to eight weeks and then re-introducing them using a specific protocol, if symptoms improve, to identify which ones are problematic. The clinical data on it suggest it works for many people, but in my experience, and from talking to many others who have tried it, it’s not feasible. Firstly, the diet itself can feel really hard to do — especially when you’re not well in the first place. Secondly, no-one really explained to me how I should do it and a common misconception is that this is a diet that you would need to stick to forever. Thirdly, it can be really difficult to establish a relationship between foods and symptoms, as symptoms happen some time later, and there are other factors such as stress and just generally the fact that you’re not in a clinical trial.

Since then, there has been a lot of research in this area and especially with a growing body of evidence indicating the role of gut microbiota in gastrointestinal (GI) diseases including IBS. Around 70% of people with IBS have dysbiosis (imbalanced gut microbial community), compared with 16% of healthy people.

I believe the future will be a form of personalised management where it is affordable for people to test their own gut microbiome. This is done through a mix of stool samples and some other personal info to be collected in a container and sent to a lab for analysis. You then get provided with information which can tell you what food is likely to trigger you. Whilst this likely won’t cure IBS, it would be a much better way of identifying triggers and reducing symptoms. We aren’t far away from this and companies like ZOE (of Covid fame) are now offering this to people, although with quite a big waiting list and price tag.

Dietary changes

Throughout the years, I’ve adjusted my diet to try and work out what works and doesn’t work for me. The main issue has been identifying which foods really are triggers.

• Spicy food: For me, I have worked out spicy foods are basically a no-go, and have removed most spicy food from my diet. Generally, spicy food and IBS don’t mix, as shown by Ben Stiller in Along Came Polly.
• Finally embracing the 3 Ks (kimchi, kombucha and kefir): These have been gaining popularity in recent years (although shamefully I was recommended them about 5 years ago) and are all rich in probiotics, which are beneficial bacteria that live in your gut. I’ve been having a lot of the first two recently and very much enjoying them.

• Gluten and lactose: Around 1% of people are coeliac (people who absolutely need to avoid gluten) and studies suggest that around 3–6% are probably intolerant/sensitive to gluten (people who for whom it might be good to reduce their intake of gluten), but a whopping 25% of people aim to follow a gluten-free diet. Gluten-free foods have become very popular among those who aren’t medically required to avoid gluten. This is partly due to a mixture of marketing, the presumption that gluten is unhealthy and some self-diagnosing that people are gluten intolerant. I don’t actually think I am, but I am increasingly becoming more mindful of really poor quality stuff in the UK, specifically bread, and am now trying to ensure that what I do eat is higher quality and fresher. On the other hand, whilst it varies massively by geography (the rates are lower in populations with a long history of dairy consumption), it is estimated that about 68% of the world’s population has lactose malabsorption. I guess what I am trying to say is whilst being lactose intolerant is much more common than being gluten intolerant, many people who suspect they may have a food intolerance may not actually have the condition. If you suspect that you have a food intolerance, it’s important to test and try to get a proper diagnosis rather than just assuming.

With crying comes laughter

I guess I’ll end by talking about my worst day. Everyone’s point of reference is different. For me it was my colonoscopy. The day before, you drink a weirdly large amount of laxative called Moviprep — which confines you to the bathroom for a day. It actually is worse than it sounds, after a while — it all just starts to hurt. I think I did sleep that night though, which was lucky!

Then came the actual colonoscopy. Colonoscopies aren’t usually painful (is what they told me) and I did receive a sedative before. The nurse said I could hold her hand. That’s nice of her I thought, I’ll take her up on that. For the next 20 minutes, it felt like I was being stabbed from my inside out. I was screaming like all hell had broken loose. The nurse asked me to let go of her hand because I was ‘going to break it’.

After it was over, I went home with a tail between my legs. Two weeks later, the consultant’s report was in. It read ‘Shiv poorly tolerated his colonoscopy today’. Great.

Have a lovely week,

Shiv