Claire's story
18th April 2018

Claire, in her 40s from Derbyshire, explains how she has suffered with IBS for over 20 years but was only diagnosed four years ago.

When I first went to the doctor with my symptoms he said I had an inflamed colon, gave out some tablets then packed me off on my way. I tried taking the tablets but they didn't help, so I stopped taking them eventually and never went back because he'd been so dismissive of me previously.

Eventually, I was referred to a gastroenterologist years later, where they ran a barrage of tests and told me I had IBS. My symptoms vary but mainly consist of cramping and pain in the gut and the need to rush to the toilet. I constantly had a gut that felt slightly ‘on the edge’ almost like a ticking time bomb waiting to go off. I would massively bloat throughout the day, and by 4pm I could no longer do up my jeans, start to feel lethargic, have headaches and feel weak after flare-ups and generally feel like my brain was on ‘go-slow’.

In the early days I could see no pattern to the flare-ups and some types of food seemed fine one day yet would appear to upset me on another day. I think I gave up trying to reason and ended up eating anything and everything in defiance, which obviously made me worse. As the years went on and because I'd felt dismissed by the GPs, I did my own research. Having looked online and found out a lot more about IBS. I went back to the GP and asked about peppermint capsules, which helped a little to ease the pain directly after a flare-up, but still, I couldn't prevent the attacks.

However, I came across the low FODMAP diet and asked to see a dietitian specifically trained in this, because I couldn't carry on struggling like I was doing. It was this that really helped me understand what was triggering my attacks and how to prevent them. In some ways, the diet has been both a blessing a curse for me. I now understand and can manage my IBS much better, but it also means I can be quite restricted in my food choices. I initially lost quite a dramatic amount of weight and became quite thin but started taking a probiotic alongside the low FODMAP diet and the change was very positive. I appeared to absorb my foods much better and managed to return to a healthy weight, slowly but surely.

I found that avoiding certain types of food and drink helped but stress and anxiety also triggered my IBS attacks. Living with a long-term condition, especially an ‘invisible’ one like IBS, can be really difficult. People think I look well but it’s difficult to struggle day to day through work, home relationships, explaining my situation to friends and I found myself becoming more and more isolated. If I ever planned to go out, frequently I’d have an attack just before, then have to cancel at short notice. Addressing any anxieties you have around IBS and how it effects your day to day life is crucial to be able to move forward I think.

Over the years, I have learned to research the condition using online resources, having felt dismissed by GPs. By educating myself, gaining support from The IBS Network charity and asking to be referred to a dietitian while following the low FODMAP diet, I’ve slowly worked out what triggers my own IBS symptoms. Eliminating certain foods such as onion, garlic, lactose and fructose, as well as taking peppermint capsules and probiotics have all helped.

I am a member of The IBS Network and I wish I’d found them much earlier in my quest to find out what was going on in my body. They have loads of trustworthy information, provide access to medical experts, sensitive gut recipes and local support groups where you can get together with others who truly understand.

Occasional blips do still happen when my gut isn't happy, and most of the time it's been something I've eaten, but now it's easier to accept and move on because I know the cause. Knowledge, understanding and validation has taken away my feeling of helplessness that I felt for so many years.

As a charity I think The IBS Network completely understands how dismissed we generally are by many doctors and people in general. 'it's just IBS', is something we've all heard I'm sure. IBS isn't life threatening but having to live with it on a daily basis certainly can be very life changing!