is a routinely unrecognised and misdiagnosed issue, which can have difficult consequences.
For many, the symptoms associated with IBS feel too embarrassing to discuss, but there are plenty of sufferers out there who are determined to raise awareness and break down the stigma.
Here, Sophie Lee tells us about her journey with IBS, and why she’s so determined to get people talking about their experiences and seeking the support they need.
The best description I can give of my own IBS is this – my bowel is a massive drama queen.
If a healthy person eats a curry that doesn’t really agree with them they might feel a bit wobbly the next day – but for me, it could knock my own digestion off course for weeks. A bloated stomach can feel so full it keeps me awake until the small hours. An attack of diarrhoea can be so painful I’ll be sweating and shaking until it’s over. This is both a highly embarrassing condition and an under-estimated one. It’s also a problem that doesn’t come with an easy solution, so the combination of all of those things mean that sufferers often feel isolated and alone.
I think the most common response is a sort of benign indifference, if I’m honest. No one’s ever been actively cruel but unfortunately medical professionals are often taught that IBS is an uncomfortable but not serious illness that is seen in oversensitive types who have more problems with anxiety than they do with their guts. So I would go to the doctor feeling like I was carrying an enormous burden and be treated as if I had a common cold.
The gastroenterologist who diagnosed me wrote in his letter to my GP that my symptoms were of IBS with ‘no sinister features’ and that it was important for me to prevent constipation. Well, yes – if I could prevent the constipation I wouldn’t have IBS! He also said to come back and see him if the symptoms worsened, but at that point I could hardly drag myself into work – how much worse did they need to get before someone would help me?
I’d often want to ask doctors how they would cope if they had to swallow five Imodium pills every day for a decade or drink laxatives every morning for a year. Having an upset gut for years is thoroughly miserable.
Unfortunately, there is quite a lot of misinformation out there about IBS, so you do hear some corkers occasionally – someone will confidently inform you that IBS is ‘all in your head’ or that it’s a ‘women’s problem’. Someone else will say that their Auntie Maud had IBS until she tried waving fairy crystals under her nose or giving up bananas so that’s all I need to do too. I’ve lost count of the people who think IBS is caused solely by stress. There’s also a misunderstanding about the length of time you need to have had symptoms before you can be diagnosed (generally at least six months) which leads to comments like ‘I had IBS last weekend’. No you didn’t!
IBS makes it very difficult to be reliable, which makes holding down a job a bit of a nightmare. I really don’t think I could have coped with a nine-to-five job for the rest of my life – I would have ended up either getting fired or having a breakdown from so many days going into work pretending that I was fine when I actually felt dreadful. But my friends have been lovely to me – they make sure that what they call ‘Sophie-friendly food’ is available if we’re meeting up and understand if I have to pull out of a social event at the last minute. And my family have been brilliant too– my parents are wonderful and have never made me feel that I was weak for finding IBS hard to live with.
The support of online friends who will never make belittle your symptoms – or tell you to just relax and stop worrying – is also invaluable. I started writing a book, almost as therapy, as I’d been living with IBS for so many years and wanted to tell the truth about how it can affect someone’s life – I’d noticed that every book ever written on IBS was by a doctor, not a patient. And I’ve had a lovely response from other IBS sufferers – one of my favourite messages was from a man who told me that he was so relieved to know that he wasn’t a wimp for finding IBS so tough to cope with.
The long-term nature of IBS can grind you down, with each new failed treatment giving you a little hope at the beginning and ending in disappointment. Waking up each day knowing that you might be in pain the whole day is grim, and I’ve suffered from some very miserable times in my life solely due to the condition.
The best healthcare experiences I’ve had were with a nutritionist who I’ve actually never met but who recommended the gluten-free diet and magnesium supplements that I take to this day. That means cutting out all wheat, rye, barley and oats. This isn’t easy as they stick gluten in all kinds of different foods, but sticking to fairly simple diet of meat, fish, vegetables and fruit, and avoiding processed foods, isn’t really that hard to follow. I take about 400mg of magnesium citrate tablets per day plus 400IU of vitamin D and two fibre supplements, Celevac and Normacol – fibre is well-known for helping constipation and the magnesium tablets help to relax smooth muscle in the bowel as well as drawing more water into the intestines.
My website IBS Tales has published hundreds and hundreds of IBS stories from patients of all ages and tells the real truth about life with IBS. One visitor said that the site finally gave her the courage to speak out in real life about her IBS and that was fantastic to hear. The more people speak out about IBS, the more chance we have of finding each other and feeling less alone.