23 April 2019
Irritable bowel syndrome (IBS) is a condition affecting the bowels (also known as the ‘gut’), and 20% of people in the UK are thought to have IBS to some degree. Despite it being a common problem, there is still a stigma around the condition – let’s face it, how often do we really talk about poo? – and some people claim that others do not understand how badly their IBS affects them.
We are interested to find out what it’s like living with IBS, in order to help break down the barriers of talking about bowel conditions. We spoke to Lindsey, who has lived with IBS for 22 years; Emma, who has been living with IBS for 15 years and Jodie, who has developed IBS recently after a gallstone operation.
IBS affects everyone very differently and, as such, there are lots of differences in the type and severity of symptoms experienced. IBS causes digestive issues such as constipation, diarrhoea, bloating, trapped wind, sensitivities to certain foods, indigestion, incontinence, fatigue and sleep problems. Some people will have predominantly constipation or diarrhoea, whereas others will have a combination of the two. Sometimes symptoms improve over time, whereas for others they may worsen. Some people develop pain, whereas others just have a feeling of discomfort. People are mostly diagnosed with IBS during their 20s and 30s, but some people have the condition from an early age, which was the case for Lindsey.
“I remember getting diarrhoea all the time at the age of 11. Then I began to get stomach pains, so I would say that over the years my symptoms have got worse. However, during my pregnancies the symptoms definitely improved.”
Many people with IBS find their diagnosis frustrating, and those who were diagnosed some time ago may have found there was little advice or treatment available to them. As time, research and understanding about this condition has moved on, this may not be the case anymore and many GPs are likely to offer more support.
“I was left from the age of 11 until last year to basically get on with it. Last September, I saw my GP again and they suggested I drink peppermint tea and Actimel. I was a bit unsure to start with as it seemed to be dairy that upset my tummy and I don’t like tea let alone a flavoured one, however within a week symptoms had gone!
“I was also referred to a dietician and they have been a great help. I had to wait for an appointment with a FODMAP group but I became pregnant before the appointment came through. So, instead, I spoke to a dietician 6 weeks ago and he said he had referred me for a one-to-one appointment but I am still waiting for the date at the moment.”
Some people find it hard to hear others say they ‘only’ have IBS, because the condition is commonly (and mistakenly) seen as a mild digestive issue, yet their own symptoms are so severe. Emma’s diagnosis took many months to be confirmed.
“I had a number of hospital stays and visited doctors over a 4 to 5-month period. They originally thought it was my appendix, and then I was finally diagnosed with IBS. My initial symptoms were extreme pain in my stomach and back, along with bloating. I don’t get the pain like I used to as it is more controlled with medication, but on some occasions where I have a bad attack I am in extreme pain.”
The cause of IBS is not clear, and the condition may be brought on by different factors for different people, but many report that their symptoms began after a condition affecting the gut, such as food poisoning or gastroenteritis, or after surgery. Jodie’s IBS diagnosis is a fairly recent development after gallbladder surgery.
“After having my gall bladder removed in November 2017, I allowed 6 months for things to settle back down and started re-introducing foods that I was unable to eat whilst I was recovering. I found that these foods were giving me terrible stomach aches and pains, and I was bloated for a few days.”
It seems that food plays a big role in IBS symptoms for many people, and the general advice is to limit alcohol, fizzy drinks, caffeine, spicy food and fatty food. Some people find relief by reducing the amount of certain foods in their diet they believe cause them discomfort, but generally it is advisable NOT to cut foods out of the diet completely. NHS dieticians will often recommend the FODMAP diet, which reduces the amount of Fermentable Oligosaccharides, Disaccharides, Monosaccharides and Polyols within the diet – these are sugars found in a variety of foods such as fruit, vegetables and dairy. It’s thought that some people are unable to digest these successfully, which results in IBS symptoms, but it won’t work for everybody. Lindsey has tried to identify trigger foods over the years
“I avoid large amounts of dairy. I only have a tiny amount of milk on breakfast and in my one cup of coffee a day. My butter is dairy free. Eggs also upset my tummy but weirdly I can eat egg in pancakes and Yorkshire puddings! Wholemeal foods upset me as well. Everything has to be homemade, I can’t eat pre-made, shop-bought products or ready meals. I’m ok at certain restaurants where the food is quite plain and basic such as meat and potatoes – Lindsey”
“I try and eat a varied and healthy diet. My triggers are unfortunately quite a lot of things that I love such as beer, spicy food, carbs or stodgy foods. I have learnt that if I have these things in moderation they don’t affect me – Emma”
There are drugs and medicines that may help relieve IBS symptoms and many of these are available over the counter, but some do require a GP prescription.
“I take Lansoprazole 30 mg daily, and when having an attack I take 2 Buscopan 10mg 4 times a day. I have found that a hot water bottle does help to relax the stomach cramps – Jodie”
“I have medication called Audmonal Forte. I have to take 2 a day; I try and take them with my breakfast and lunch so it reminds me to take them, especially when I am work – Emma”
Both Lindsey and Emma found that their IBS improved greatly during their pregnancies, which was lucky for them and is not always the case, with hormonal changes, taking pregnancy supplements and the baby physically affecting how the bowel works often causing people increased digestion symptoms.
“My IBS got a lot better when I was pregnant. I was advised to stop taking my tablets as they weren’t tested on pregnant women, which unnerved me to begin with and I was worried I would be in pain and struggling with my IBS through the whole pregnancy. But I didn’t have one flare up or an attack for nine months - it was like I didn’t have IBS. Hours after having Lily, I was getting IBS pains even though I had not eaten anything. I think it was due to my body being stressed from labour and an emergency C-section. I soon restarted my medication and symptoms were again under control – Emma”
Some people with IBS also have mood-related difficulties, due to there being a link between the gut and the brain. It’s not clear if IBS causes mental health issues such as depression or anxiety, or if, for some people, their mental health difficulties cause IBS (or makes symptoms worse) – it may well be a combination or a vicious cycle. Our three contributors have all had experiences of low mood and depression, although they have not all made a connection with their IBS before.
“I do suffer with depression, also with stress. I find that if I’m stressed then my IBS flares up. Sometimes, if I’m subconsciously stressing about something, it flares up as well – Lindsey”
“A couple of years ago I had a spell of feeling low and depressed, where I was prescribed medication, but I wouldn’t say this was connected to my IBS. Stress can definitely cause a flare up – Emma”
“Certainly when having an IBS attack, I have a low mood and feel very tired – Jodie”
IBS affects each person with the condition differently, but with our societal attitudes towards bowel movements, anxiety about symptoms causing issues when out in public, and a lack of knowledge or compassion for people experiencing IBS, many people find their condition stressful, embarrassing and impactful.
“Sometimes, if I’m having a flare up, I don’t want to go out in case I’m caught short. This causes me to start stressing which upsets my stomach – it’s a vicious cycle. I’m very cautious of what I eat which people don’t understand; they say ‘well how can you eat this but not that?’. There’s a deep lack in people’s understanding and awareness – Lindsey”
“I do tell people I have IBS, and quite a few don’t know what it is. Before diagnosis, I was off work quite a bit due to hospital stays, and I had the odd days off when it was too much, until my medication was right. Since then, I think I have had around 2-3 days off in the last 8-10 years because of it. But now, in general, it doesn’t affect my daily life when it is controlled with medication and healthy eating. If I have a bad attack, it does hold me back doing general day to day things, due to the amount of pain I’m in – Emma”
The messages we gleaned from talking to these three women, coupled with direct advice they recommended to others with IBS, are:
If you are unhappy with the diagnosis you’ve been given, or feel your IBS is out of control, see your GP as many times as you need to. Treatment options change all the time, and it may be the case that what you’ve tried before just isn’t right for you, but that doesn’t mean nothing will work.
Keeping a food diary to record your meals, snacks and drinks is a good starting point, but can be overwhelming to do on your own, so ask your GP for a referral to a dietician if you think you may have some IBS triggers in your diet, but are finding it difficult to work out what these are.
If you find a drug or even a natural remedy such as peppermint that works for you and you don’t experience side effects, keep taking it as long as you are advised to at the correct dose.
There are lots of sources of IBS support available, so if you are struggling to manage your condition, talk to a charity or connect with others living with the condition in an online forum – IBS can cause isolation, so try to reach out when you need to.
Life can be stressful and so is IBS, so find ways to look after yourself and practice self-care to help improve mood and reduce stress. Read more about how to stress less with a health condition.
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