By Erica Ascenza, RD.
When the founder at Tummi asked me if I would be happy to write about the taboos that surround IBS, I was at once happy to be able to help whoever will read this article to break down some barriers to talking freely about their IBS, but also confronted with my own inner dilemma: should I write this article as Erica Ascenza the Dietitian, or Erica, the one who’s battled and lived with IBS for 26 years?
I will speak as both! I am in an advantageous position where I can help my patients to never have to go through years of silence and shame surrounding my toilet ‘issues’.
I was first diagnosed with IBS in my teens, and let me tell you, adolescence is hard enough to get through without having to spend half of it in the bathroom and feeling embarrassed about your body’s functions.
The worst thing is that embarrassment and stress can have a very negative impact on your quality of life, and in turn exacerbate your IBS. I spent years between school, work and university, wondering if I could make it through the day without another ‘accident’ and without embarrassing and humiliating myself with the people I wanted to impress and be liked by.
It turned out, most of them didn’t know I existed anyway. If anything, my IBS would have put me on the map! Not for the reasons I would have liked, of course.
Years later, I discovered that no one had been any the wiser of my problems because they had their own issues to deal with!
Getting older has actually done me a world of good because I stopped caring so much about people’s opinion. Especially when it wasn’t the people who mattered to me and for things that I knew were no longer a matter of shame and embarrassment for me.
Growing up, I thought that suffering in silence was what I should do at all costs! Heavens forbid if I thought about discussing bowel habits in the Union Club. That would be so un – lady like and sooo uncool. And even if I had wanted to, I wasn’t sure my friends would really understand what I was going through.
It took me two decades of working in the NHS and seeing patients affected by the same condition to be able to finally admit and embrace that I too suffer with IBS.
The first time was at a dietetic postgraduate course on food intolerances. I was with a bunch of strangers that didn’t know me at all so I wasn’t afraid to shock someone I had known for years and hidden my condition for that long. But at the same time these were other dietitians and I wanted their esteem and didn’t want to be looked at as one of their patients.
It turned out just as I had suspected all those years, no one was in shock running away scared or moving their chair away from mine in case I were to pass obnoxious gas during the next lecture!
And it actually turned out that other dietitians also had IBS and others had food intolerances and allergies that cause their body malfunctioning at times and dumping them in their own embarrassing situations.
Nowadays I can talk freely about my IBS and I am a dietitian which means I can easily talk about bowels during my lunch break in the dietetic office and not bat an eyelid. it certainly doesn’t put me off eating my low fodmap lunch!
I no longer have this “dirty little secret” to hide. What I tell my patients is to find people they trust and feel comfortable with and share their experience. It’s exhausting to keep it to yourself and IBS is exhausting enough without adding anything else on.
IBS differs from most other health conditions in a very important way. IBS symptoms are bodily functions that our society has been conditioned to think of as embarrassing.
As children, most of us have been taught to hide any signs of bowels functions as discussing these in public would be in bad taste!
Unfortunately, for the longest time, discussing IBS symptoms has also been Taboo.
Because of our upbringing, most people with IBS experience feelings of shame regarding their bowel problems. If you are a private person, or tend to be affected by people’s judgment, these feelings of shame are further intensified.
My advice to those people is to try and work yourself up to breaking your silence. It may sound impossible to believe it now, but you will find a great sense of relief when you are no longer hiding such a big part of your life.
IBS does not define you as a bad or good person, but it is part of you and your life and nothing in your life should make you feel less confident and proud of yourself!
It doesn’t matter if you have IBS-D and have to make multiple trips to the bathroom or if your IBS-C results in lengthy times spent on the toilet. People will not judge you for what is a human bodily function. In fact, most will feel empathy because they have been there too! And if anyone were to make snarky remarks, you can ignore them as that kind of ignorance does not warrant any attention.
Also, when you learn to see your own symptoms in a more matter-of-fact way, they will be detached from feelings of embarrassment or shame. They are normal functions that everyone experiences daily to be alive. Because of your IBS those functions cause you pain or other issues that you need to address in order to manage them and regain your quality of life.
I am by no means naïve when considering the dilemma of telling your colleagues and employers about IBS.
As a young student (many decades ago) I too hid my conditions from my employer… in my mind, no one would have employed a girl with IBS to work in a restaurant or a hotel! What if my employer thought I could have ‘germs’ in my hands from my trips to the loos and I could contaminate the customers’ food or their hotel rooms.
IBS is not a contagious disease and the type of diarrhea caused by IBS is not the same as when you get a vomit and diarrhoea bug, however people are still very scared of any mentions of poo around food! But of course, we would be super careful about hygiene. If anything, spending years in the toilet has taught me, it’s good hand washing technique!
You may choose not to tell your employer if you feel it may put your job in jeopardy (this would be illegal, but sadly, still possible in the real world.)
However, please get in touch with your GP and if you need time off work you can be signed off work for IBS if your symptoms are particularly severe.
Travelling to and from work and to meetings can be very challenging too.
Although you may find it a little uncomfortable at first, talking to your employer can help you get them to support you at work.
If an employee’s IBS impacts on their day-to-day abilities, it may be deemed to amount to a disability under the Equality Act 2010. This means that employers have a duty to make reasonable adjustments to accommodate the employees at works and assist them by making the necessary adjustments to the workplace.
Consider informing your manager about your condition and highlighting the effect that additional stress can have on your symptoms. If necessary, ask your GP for a letter explaining your illness and how it impacts on your working life.
Some of the workplace changes that you could negotiate with your employer are:
- consider flexible working
- easy access to toilets
- allow you to take regular work breaks
- ensure effective monitoring and management of your workload
If your IBS is so severe that makes it impossible for you to continue to stay in your current job, don’t leave without saying anything and putting yourself in financial constraints without asking for some advice and support first.
The Government-funded initiative, Fit for Work, provides a free support service and work-related advice for employers, employees and GPs to help those who are in work or off sick. More information can be found at: http://fitforwork.org
In the meantime, you can help yourself with your IBS by trying the following:
- Self-management of IBS symptoms. Your symptoms are unique to you but starting with getting support from your GP and your Dietitian will help you learn to manage your symptoms.
You can find more information on IBS Self-Care Programmes on The IBS Network website at: www.theibsnetwork.org/the-self-care-plan
- Managing stress and anxiety. You can start with using a relaxation or mindfulness app and you can ask your GP to refer you for counselling or Cognitive Behavioural Therapy which has been shown to be very effective to manage anxiety and depression which in terms improve their effect on your bowels
- Diet and eating at work
The TUMMI Fodmap App and Website have extensive information on diet, recipes and food related topics to help people manage IBS: https://tummi.co.uk/
The IBS Network website also has a lot of helpful information: https://www.theibsnetwork.org/diet
You could also try the following:
- get up early enough to allow plenty of time for breakfast (skipping meals to avoid having to go to the toilet can actually make your symptoms worse) and to go to the toilet before work
- take a proper lunch break and avoid eating meals on the go (eating slowly and chewing properly helps digestions and IBS)
- prepare your own food so you know what it contains and the portion sizes (especially if you are avoiding certain triggering foods or following a low FODMAP diet) – you can check your ingredients (or shop bought meals if you chose to buy your lunch out) on a FODMAP app like Tummi.
- to avoid dehydration and constipation, aim to drink at least eight cups of fluid per day, especially water or other non-caffeinated drinks.
- Preparation is key!
Keep a supply of your IBS medication with you, along with some wipes and anything else you might need during an attack.
Consider applying for a free ‘’Just Can’t Wait Toilet Card’’ from the Bladder & Bowel Community, which you can use anywhere in UK to access toilets wherever available (even if it is a staff only toilet in a store!): https://www.bladderandbowel.org/help-information/just-cant-wait-card/
You can also purchase a Radar Key for all disable public toilets (remember not all disabilities are visible!) Disabled toilet keys fit the Wellington lock that is widely used by Radar and the National Key Scheme, giving you access to 7,000 UK toilets (you can buy it online, from any suppliers including Amazon).
Even if you don’t consider yourself to have a disability, this could be a compromise to help you when your IBS kicks in public places and trust me, I have had to use it many a time to avoid an ‘accident’ whilst waiting in a long queue for the public loos at theatres and festivals! It is in both our interests and of that of others if we feel safe and prepared and don’t have to give up on going out, participate in activities with friends and family and socialise.
A recent research reveals that Brits are burying their heads in the sand when it comes to their gut health, with more than 1 in 6 (18%) of the 2,000+ people surveyed, admitting they have never visited a doctor despite suffering with a bowel issue. And yet nearly 3 in 10 Brits (28%) reported soiling themselves in public, nearly a quarter (23%) passing wind in a meeting, nearly 1 in 5 Brits have passed wind during sex (19%) and 17% of Brits having to carry two sets of clothing because of soiling or bloating.
I know I have often covered up my problems with my friends and even my partner. Whenever I was having a flare up, I would cancel on plans or refuse to make plans. Even when I explained my symptoms telling them I couldn’t eat certain foods, some of them wouldn’t understand why I could eat certain foods and not others. Especially when the foods I couldn’t eat were the ones everyone know are healthy (vegetables, pulses, fruit). Unfortunately, there’s a deep lack in people’s understanding and awareness when it comes to IBS and the Low FODMAP diet.
At a particularly low point, I googled how to get support dealing with IBS and that is how I discovered some forums dedicated to IBS sufferers and others with gastrointestinal disorders. In those forums I learned that other people were going through the same in their own personal lives.
IBS is not a life-threatening disorder, but some people become incapacitated by it. Some of the people I was in contact with, had to quit work, stopped traveling, and withdrew completely from socialising. Some told me they were feeling very depressed and that in terms was exacerbating their brain-gut feedback loop and intensified their symptoms.
And it finally hit me that it was up to us to educate our families and friends and spread the awareness and break the taboos!
Like me in the past, many people with IBS are too embarrassed to talk openly about it, or think that people might dismiss it as a minor ailment. I think that many of us get to the point where keeping this big secret is too much and we choose to take the risk and start talking about it more openly.
Eventually, we learn that discussing things with our friends and our significant others help us to come to some agreements. We can set boundaries and help with daily routine without the need to stress over every little thing. We can plan who gets to use the bathroom first and be able to laugh at each other insecurities and stop worrying about every little ‘noise’! And if some days I’m bloated and gassy like I have a bunch of balloons in my tummy, I don’t have to worry about annoying my friends for not giving a real reason for cancelling dinner plans and if I veto cuddling on the sofa it’s not because I have lost my interest but it is in fact in both of our ‘interests’!
So, how can we help to break down the ‘IBS taboo’?
I think it’s often a case of simply talking about it, and recognising that despite fear of judgement or exclusion, we can find unity in the reality that we all have bowels movements. Talking about our bowels’ habits can then become part of all our subjects of conversations.