Living with IBS

a personal story from Georgia, one of the Dietitians behind Direct Dietitians

I think one of the most annoying (although definitely not THE most annoying) thing about living with IBS is the stigma. People say ‘oh it’s just IBS’ or ‘so you just get tummy aches’ or ‘oh yeah I have IBS too - sometimes when I eat a really large bowl of pasta I get bloated’. These kinds of comments really minimise the life changing effects that IBS has and can often make us feel frustrated and misunderstood! 

There is no way of describing the feeling of a severe IBS flare up unless you have experienced it. The feeling of horror as you realise you are not going to make it to the nearest bathroom. The wave of pain that crashes over you whilst you are putting all your focus on not fainting off the toilet. The guilt that you get when phoning in sick to work as you worry people will not understand. The drop you feel in your stomach when those cramps start and you are sat on a plane about to take off. The panic you feel when you are in a car on a motorway stuck in traffic with no toilets in sight. Trust me - I have been there. 

So let’s throw it back to when I was 14 and at school - on a random day I was getting ready for PE and I started having really intense stomach pains. Nothing like I had ever felt before. I thought ‘hmm this is weird - must be some weird period pains’. Ten minutes later I am walking up the ramp into the PE hall and my eyesight starts to go. I feel light headed and 5 minutes later I am waking up lying on the floor looking up at my friends' very confused faces. I was put in a wheelchair and wheeled to reception where my mum picked me up and whisked me to the doctors. Whilst in the waiting room I tried to talk to my mum but the words that I wanted to say in my head were not coming out of my mouth. Saw the GP who labelled it a ?stomach migraine? And sent me on my way. This turned out to be my first of many severe IBS flare ups that took over my life. 

From this point on school got really difficult. I was scared to eat anything at lunchtimes, when I did get flare ups I went to the school nurse who told me ‘you are just having period cramps go back to class’. Five minutes later I would faint and my mum would have to turn up again to pick me up and take me home. Rinse and repeat for the next 2 years of my high school experience. I would have to run home from the bus in pure fear that I would not make it to the toilet in time. I lost a lot of weight as I was terrified of eating outside of my house (I went down to a size 4 clothes size). All this time I was back and forth to the GP - 2 colonoscopies, 3 stool tests, 4 blood tests later nothing was found so I was given the umbrella diagnosis of IBS. I was confused - I thought IBS was having a slightly sore tummy at times? Was it normal to faint from the agony of the pain I was having? Remember I was way too young to have Reddit at this time so could not seek the comfort and reassurance of the r/IBS subgroup (which has since given me so much support). 

Unfortunately, I tried all the antispasmodic tablets prescribed by the GP - Buscopan, Mebeverine, some amitriptyline - all to no avail. I was eventually referred to a Dietitian after 2 years for support with the low FODMAP diet. I strongly believe if I had had the support back then with the low FODMAP diet then this could have changed my life much earlier on - unfortunately, I was only given one appointment. At this one appointment I was told to exclude all FODMAP foods. So, this is what I did. However, what I didn’t do, was reintroduce them again. I had no support from the Dietitian to go through the reintroduction stage and I was terrified to try these foods again in case they brought back my symptoms. This led to me having an extremely restricted diet for a long time. I was a vulnerable teenager so this further deteriorated my overall relationship with food so I was likely very nutrient deficient and struggled to gain weight. My symptoms slightly improved with this restricted diet, however I was then getting no fibre which eventually made it worse. Never was the difference between insoluble and soluble fibre explained to me. Fibre was demonised in my mind which eventually led to my symptoms coming back with vengeance. I was constantly exhausted and fatigued with debilitating anxiety around my flare ups. 

Fast forward to my A-Levels and deciding what to take at University. I was fed up with relying on healthcare professionals who did not take my condition seriously. I decided to teach myself what I needed to know, and I started my degree in Dietetics. I studied this for four years and eventually grew to have the knowledge of dietary triggers of IBS, alongside mental health triggers. I started to utilise the techniques provided in my lectures and I started to slowly feel better. Now that I have graduated and been working in the NHS, it is time for me to give back to the IBS community and offer my knowledge to help others. I strongly believe that my personal experience makes me the most empathetic person to walk this earth and I am excited to get started with changing people’s lives for the better. 

Don’t get me wrong, my IBS is by no means cured - anyone who says they have the cure for IBS is not being completely true to themselves or their clients and that is not the foot I want to start on. However, my quality of life is significantly better - I no longer let my IBS hold me back in terms of my travelling goals and I now manage to eat outside of the house at restaurants (something I did not do for 4 years). I now do not fast the day before travelling out of fear and I have managed to gain weight and learnt to enjoy food again. 

Yes I still have my bad days and I don’t think they will ever go (in fact I am writing this on a day that I have had to go home sick from work) but my quality of life has definitely changed and I feel more in control than ever. I think 14 year old me would be proud. 

Written by Georgia Cohoon, Registered Dietitian.