My biggest fear, as someone with severe IBS, is finding myself in a hospital or MH inpatient unit and having to deal with food.
It is estimated that around one in ten people will experience IBS symptoms during their life. For many this will remain mild to moderate and, while unpleasant, not have too severe an impact on their lives. For a minority, like me, their IBS may become more severe and require a more complex and restrictive diet to manage. Causes and treatments for IBS are still little understood, but research is now hotting up and a greater understanding beginning to emerge.
I was first diagnosed with IBS in my teens, but it kicked off seriously after a particularly stressful period about three years ago. When my symptoms became severe I was referred to a dietician and used the low FODMAP diet, developed by Monash University, to begin to work out what foods triggered my IBS symptoms. Tiresomely for me this turned out to be quite a lot of very common foods, in particular onions and garlic, beans, lactose and many sweeteners.
What happens if I eat garlic bread?
My early warning sign is a slight tingle in my nose and mild sinus pain that starts almost instantly. Though these symptoms are akin to a mild allergic reaction, IBS of this kind is classed as a food intolerance. Research has shown that antihistamines can be effective for many people with severe pain from IBS suggesting that for some people there is an immune reaction causing the hypersensitivity of the gut. Then I get a headrush that feels a bit like downing a double shot of tequila on an empty stomach. My mind is now filled with treacle and it is hard to put thoughts together.
Next the bloating and gas will start, followed by nausea and stomach pain that can only be described as feeling as if someone is slowly pouring acid through my large intestine. At this point all I can do is curl in a ball and whimper for a few hours until the spasms make their way through my system. And of course there is the classic combination of horrific constipation and explosive diarrhoea.
It will take around three to five days for me to fully recover. During that time my stomach feels bruised from the inside and will be particularly sensitive to fodmaps, even ones I usually tolerate without a problem. My brain will feel fogged, I will be bone crushingly exhausted and my mood drops to terrible lows.
At home I have learnt to manage my IBS by being careful about what I eat and having antihistamines on hand to take the edge off if I accidentally eat something I shouldn’t. However, with complex dietary requirements, eating out is stressful and the idea of being at the mercy of a hospital kitchen, particularly if I am not in a position to communicate my needs well, is a genuine nightmare inducing fear.
How you can help
As a nurse there is a lot you can do to help people like me to feel confident we won’t end up experiencing horrific pain or misdiagnosis due to clinical staff not recognising that some symptoms are being caused by the food we are eating.
Most importantly take IBS seriously. If someone has a diagnosis of IBS speak to them or their carers about what this means for them and what they need to support them. If they say they can’t eat something, don’t assume they are exaggerating or being fussy. Stress and some medications can make IBS symptoms more severe, so if they are in hospital there is a fair chance they may be suffering more than usual.
Provide the ingredients list for menus and foods. If I ruled the world everywhere that sold food would publish or be able to easily provide a form of the menu with ingredients listed, so I can make a quick, informed choice about what I am eating. This would make the world an infinitely less stressful place.
Spread awareness. Sadly my experience has been that even in a hospital setting, where I would expect there to be an awareness around dietary needs, there often is not. So my big ask is for you to take some time to understand the needs of patients and family around food and raise it with colleagues.
Everyone needs to eat and we should all be able to do so without being afraid of the consequences.
(Jess Redway – student nurse)