Living with IBS | IBS Awareness Month

IBS, otherwise known as Irritable Bowl Syndrome, is a relatively unknown subject for those that don’t have disorders which centre around the digestive system, yet it is one of the most common. It has been reported that 1 in 20 people here in the UK suffer with the condition, and it is a lot more prevalent with women. April is coincidentally IBS awareness month and to honour the occasion, I want to share my own experience with the condition.

I am in no way an expert might I add and the more I have become accustomed with the symptoms, I have quickly come to realise that my experience will most likely not be the same as the next persons. Nevertheless, I was diagnosed in 2019 after a period of elimination through tests to make sure I didn’t have Crohn’s disease, bowel cancer or any other digestive issues. Its not the easiest thing to get an answer for and many people end up with a mis-diagnosis, however, although this occurred during a pandemic and a remote call, I was in the lucky (ish) position to get clarity quite early on.

Initially I experienced bad bloating, extreme diarrhoea and sickness as well as reactions to certain food, but after living with this for quite some time, I think its important to note that the symptoms I had when I first got diagnosed, aren’t identically to how they are now. For me, IBS comes in waves with certain ‘traits’ that stay the same – it’s unpredictable and can be very frustrating to deal with – but there are certain things you can do to make yourself more comfortable and importantly, not let it define how you live.

Let’s start with getting diagnosed and what that did. I know a lot of people say that putting a label on things can do you a disservice but getting told I had IBS was an extremely reassuring and relieving time for me. I remember sitting at my dining table, taking the call in the one spot I could get reception, and feeling this immediate sense of relief that I could do something about what had been bothering me for months.

For such a sensitive topic – your bowel movements is not exactly dinner time conversation – I couldn’t really bring IBS up around other people or share how it affects me, and therefore there was no way to find other people who might have been in the same situation. Trying to understand something you’ve never heard of was a complex situation to be in, hence why raising awareness is so important, especially for something that impacts so many people.

In respect of this, the sense of freedom that label gave me was insanely important to purely making me feel less alone. That’s not to say that works for everyone, but it made such a difference for me

Nevertheless, I can’t say getting diagnosed was the complete happy moment I have painted it out to be. Once the relief was done, I had to come to terms with the fact that this was something I could deal with for the rest of my life and there is little you can do but manage the symptoms. Finding out you’ve got something which can put a certain hold over your life is not the easiest thing to grapple with but I do promise, that if you’re facing something similar, it does become easier.

Doctors are keen to give you a nutritionist as for a lot of people food can be a major trigger point – things like onions, garlic etc. can be highly sensitive. I, for one, got put on a huge waiting list and was told to keep a food diary. However, I quickly realised this was not for me. I moved about a lot for two years and sticking on the one waiting list for a nutritionist was impossible, I also found the food diary very insular and not exactly helpful. So, I stopped. I tried to track things that made me worse or really flare up my symptoms, but mostly (If I am totally honest) there was no complete or full rounded reason for what I was dealing with.

The nature of IBS is a beast, and one which makes little sense. It revolves primarily around how your brain and gut communicates so if you’re feeling anxious, stressed, upset etc. it can flare up your symptoms by a country mile. For someone like myself who is a physical shower of stress, I was pretty doomed to begin with. IBS would show me how I was feeling internally, even if the stress had not hit mentally. I’d be stuck in toilets, curled up with intense abdominal pain (think worse that period cramps) and having no energy to move, purely because my gut was not happy. In that sense, it can hit you when you least expect it and for reasons (mostly) beyond your control.

Having no control over something, for someone who wants all the control they could possibly get, is probably one of the hardest bits about the condition and over the past four years, I’ve had to slowly come to terms with the fact, that I just have to let it run its course.

IBS, to me, has been as much of a mental battle, as it has been a physical one. Trying to wrap your head around something which gives very little reasons for its actions, is something I have never been good at. Physically, I would swell up and look 6 months pregnant, something else which really took a toll on my confidence. I stopped wearing skinny jeans (which on reflection is something I have been quite happy to give up), bought a lot of baggy clothing, would wear smock dresses and things with elasticated waistbands, purely so I could feel like I could breathe and so my very swollen stomach would not be on show.

I experience extremely solid and painful bloating in, what seems to be, no obvious pattern. The image attached here is a milder case of bloating (the cover image is an idea of when it gets quite bad) but I hope it highlights the extent to which this can take a hold over someone physically.

I wish in writing this I could say it doesn’t have an effect on me anymore but I think that would be unfair. Like other aspects, the toll this takes comes in waves. I am of course more used to it but that doesn’t make it hurt any less.

If you’re also bearing the affects of IBS and bloating, some things I’d recommend are:

  • Peppermint tea (something which has come in really useful). Peppermint helps with the bloating and decreases the level of discomfort
  • hot water bottle – again, another thing which makes it less uncomfortable, especially if you’re experiencing abdominal pain with the bloating
  • rest – it sounds silly but if your bloating is connected to stress or anxiety, then managing this will have a nock on affect to your physical symptoms
  • Bloating can also be a symptom of stuck wind and therefore wind-eze can be useful to removing the trapped wind

Although I haven’t had to cut out food, IBS has meant I have had to cut out fizzy drinks and most carbonated items, I can’t drink beer, cider or wine (if I do drink cider its in the comfort of my own home) and I mostly drink vodka, lime and soda or vodka, lime and tap water (try explaining that to a barman). I also have to be wary of things like chickpeas, pasta and veg. Changing these wasn’t necessarily an issue however the social repercussions of having to constantly explain your drink choices did become increasingly frustrating and the increase in anxiety around eating due to unknown reasons for reactions (and the issue of not knowing how severe the reaction would be) did affect me going out for a few years. I wish in listing these symptoms I could say that it was something easy to manage but as I have mentioned, the unattainable regularity of these symptoms from one person to the next creates an inability to prescribe/suggest ways of helping. My only piece of advice would be to put yourself first and to listen to what your body is telling you.

As you can tell, IBS is a mental, physical and nutritional issue and one which can have a grasp on normal every day tasks. I can’t say I’ll ever get used to having it but I can confidently say now I am more equipped to deal with it. This was largely through finding more people that have it and through openly talking to friends and family about how it affects me so they can also be understanding. Lottie from the Tummy Diaries can be especially useful when you first get diagnosed but I would also suggest doing what is right for you, rather than what a million other people are trying to tell you.

Gut topics are still highly frowned upon but I hope that in talking about this more, it can reduce the stigma so we can all feel comfortable in our own bodies. For example, I would love to get to a point where public toilets are made more accessible, toilet breaks and chronic pains are understood more in the workplace and sport can be made significantly more welcoming to those with these issues. Its a marathon not a sprint but one which I hope doesn’t last too long.

If you’re also dealing with a chronic illness and/or IBS I send you all of my well wishes, and if you’d like to leave your own personal experience below, please do.

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