Every personal story of irritable bowel syndrome (IBS) that I’ve heard is different, yet at the same time every story is strangely the same. It’s one of the unusual things about IBS… its individual nature means that symptoms and triggers can vary considerably between sufferers, yet the heartbreakingly similar experiences of how IBS dramatically impacts a sufferer’s quality of life is the story that I hear over and over again.
So how does this situation happen?
Let’s start by looking at how things are different…
IBS is not a single condition, nor is it is a simple one.
The cause of IBS is not yet known, but is likely to be different for everyone. Similarly, IBS symptoms are not consistent among sufferers. The only thing that all IBS sufferers have in common is that they suffer from recurrent abdominal pain or discomfort. However, to meet the definition of IBS, each person must also meet at least two out of the following three criteria:
- Improvement of abdominal pain following a bowel movement.
- Onset of abdominal pain that’s associated with a change in how often you have a bowel movement.
- Onset of abdominal pain that’s associated with a change in appearance of a bowel movement.
Some sufferers will meet all three of these diagnostic criteria, while others will meet only two, making it possible that another sufferer will not meet the same criteria that you do. Plus, IBS can be further categorised into four groups based on the appearance of bowel moments, creating even more differences between sufferers.
And then there are the other gastrointestinal symptoms that aren’t an essential part of the definition of IBS, but which are common amongst most sufferers… abdominal bloating, excessive flatulence and/or very smelly flatulence. Some people also suffer from nausea, vomiting, or heartburn/reflux. I’ve never met one IBS sufferer who doesn’t have at least one of these additional symptoms, yet most people don’t suffer from all of them.
Next there are the more peripheral symptoms, which at first don’t seem directly linked to the IBS, but when you look deeper are related (although sometimes it’s hard to see the link until after the IBS symptoms are finally under control). These symptoms could include backaches, shoulder aches, sore hips or rib pain, which may be due to referred pain from the gut (which means that the pain is actually in the gut but it feels like it’s coming from somewhere else), pressure from abdominal bloating, or unconscious postural changes that you make to try and put your body in a more comfortable position. Again, not everyone suffers from these, but many do.
Then there’s the general symptoms of malaise and unwell that can occur in some sufferers, but not all. For instance, headaches, tension, tiredness, mouth ulcers, lack of mental clarity (or brain fog), and irritability.
Some IBS sufferers also experience mental health challenges, such as anxiety and/or depression. It can be difficult though to work out which causes which. For instance, while many IBS sufferers experience anxiety, it can be difficult to work out whether anxiety triggers the IBS or whether it’s fear of IBS symptoms that creates the anxiety. Unravelling the true cause is like trying to work whether the chicken or the egg came first. It should be noted though that some people do have both IBS and anxiety as distinctly separate conditions, but both conditions can feed off each other to make them even worse.
So, as you can see, there are many things that a person with IBS could be experiencing and feeling within their body, which makes all IBS sufferers very different. And even if you managed to find two people with the exact same set of symptoms, it’s likely that their triggers for IBS would differ. That’s because while there are many potential IBS, some people have many triggers while others have few. It can also be that one person requires a large amount of particular trigger to set them off, e.g. lots of stress or a large serving of milk, while another person might be incredibly sensitive to those triggers and require far less of it to experience symptoms.
And then there’s the question of what caused the onset of IBS symptoms. Odds are that’s likely to be different too.
When looking about IBS from this perspective, it’s easy to understand how personal stories of IBS are all different.
But now I want to show you how the stories of IBS are the same.
What makes all IBS stories the same is the personal suffering that’s felt.
First there’s the confusion over what’s happening and why it’s happening. Most people who get diagnosed with IBS don’t go to their doctor expecting to get that diagnosis. Maybe they thought it was a gastro bug, maybe there was a fear of something more sinister like a tumour, maybe they just felt ill for a long time but had no clue why, or maybe they just thought they were run down and stressed out.
Then there’s the tests that always seem to come back negative, producing more questions than answers and making it feel like it’s all in your head. Unfortunately, the majority of people with IBS have at some point had someone tell them that it’s all in their head – that they’re a worrier or an attention seeker, not someone with a genuine problem.
Then there’s dealing with the diagnosis. It’s awesome to know that it’s not a life-threatening problem. But when you’re told there’s no cure and that you’re stuck with it for life, it can cause a sense of despair, hopelessness or fear over how you’re going to work things out and be able to keep living your life as you knew it.
Next up is dealing with the well-meaning, but misinformed people who know the solution… eat more fibre, drink more water, eat healthier foods, go and get fit, exercise more often, exercise less often, do a relaxation course, try yoga, stress less, see a shrink, cut out gluten and dairy because they’re evil, get more sleep, change your job, stop thinking about it, eat more, eat less, lose weight, gain weight, stop being a hypochondriac.
I’ve heard all of these and then some. I’ve tried many of them too. And if you’ve had IBS for a considerable amount of time, I expect that you’ve heard many of them too.
Now I’ll admit that some of those ‘solutions’ can help a bit, but normally only for a short time and never completely. Some though are downright wrong for certain people to try.
Pain, confusion, fear, frustration, irritability… those are the things that I keep hearing over and over in each person’s IBS story.
Those are the things that make us the same.
The 1 in 7 of us that experiences IBS.
But thankfully the story doesn’t end there.
Our understanding of IBS and its management has come a long way. We now have the low FODMAP diet that’s been shown to help at least 75% of IBS sufferers, providing us with a way to make our lives less irritable. Given the success rate of this approach, for most IBS sufferers this is the best starting point to get their symptoms under control.
But it’s important to understand that the low FODMAP diet isn’t a cure all and won’t completely remove all symptoms, even the people that get the most benefit from it. That’s because there are many IBS triggers that go beyond FODMAPs and more still that go beyond food intolerances.
So if you’re having trouble managing your IBS symptoms, and especially if you already follow a low FODMAP diet, remember that there are other strategies that might be beneficial in getting your symptoms under control. But also remember that while other people with IBS may not experience exactly what you do, they are still likely to understand the suffering you experience each day. Not just the symptoms, but the frustrations too. So don’t be afraid to share and talk to others so that you can find the support that you need to make your IBS easier to live with.