Sophie Lee's Story

What were the steps leading up to your diagnosis?

When I was 12 I suffered from a truly awful bout of food poisoning and my guts were never the same again. I had never suffered from any bowel problems before, but I started to get frequent bouts of stomach pain and constipation. A few years later I began having terribly painful attacks of diarrhea where I would be left sweating and shaking. I went to my family doctor when I was 16 and was prescribed laxatives, which did work, but also meant that my poor bowel swung from one extreme to the other with no happy medium. I battled on alone for another few years, not telling anyone about my symptoms, as they just seemed far too embarrassing to mention. The next doctor I saw prescribed fiber supplements, which didn’t help much. Then, after four months in my first job after university, I just couldn’t cope with the frequent pain and discomfort anymore and took a month of sick leave from work. I was referred to a gastroenterologist and given a blood test and ultrasound, but nothing was found, so I got the "official" diagnosis of IBS. The gastro doctor then prescribed a laxative and sent me home, believing that I would be reassured by his conclusion that I wasn’t suffering from anything "worse" than IBS. In reality, I was thoroughly depressed that I felt so ill and yet wasn’t being taken seriously at all. I could hardly struggle into work through the pain, but I was expected to somehow easily cope with this condition because it was seen as "just IBS". I’m now 39, so I have lived with IBS for almost three decades.

What lifestyle changes have you needed to make?

I take magnesium and calcium supplements daily, along with vitamin D, and I find that following a relatively strict gluten-free diet really helps to control my symptoms. I very rarely travel as there’s nothing more likely to upset my delicate system than a brand new schedule alongside unfamiliar food and drink. I found working in an office nine-to-five extremely difficult as I would often be in pain or need the toilet; so, I was massively relieved when I was able to start working from home. Having access to your own toilet 24 hours a day is a luxury that only IBS sufferers understand! In general, I don’t think there’s a particular link between stress and IBS symptoms in my case, but I do try to keep my life fairly stress-free, because I’m sure it doesn’t help my body to be over-worked and exhausted.

Who has been there for you? How?

My parents have been endlessly supportive and caring, helping me with everything from booking doctor’s appointments to paying for a private consultation to emotional support. My friends have also been lovely, never making me feel embarrassed for a moment and always looking for “Sophie-friendly” restaurants that I can eat in, which have gluten-free options. They never judge me if I have to miss a social event, even if I drop out at the last minute. I’ve also found support on the internet from various forums and websites where us intestinally-challenged folk can be ultra honest about even our most embarrassing symptoms and support each other when others think that IBS is all in your head or a disorder that affects over-sensitive anxious types.

What accomplishment are you proud of?

I’m proud of the fact that I have managed to pay the bills and keep a roof over my head while battling this disorder, even though there have been some days where I felt like I couldn’t cope anymore. I’m also proud that I was able to write and publish a book about my experiences, an honest account of how it really feels to live with IBS. I also have a website that collects IBS personal stories and treatment reviews to help sufferers swap ideas and experiences.

What's your advice to someone else living with IBS?

The first thing to do would be to tell people, if you haven’t already – please don’t be embarrassed or ashamed of your symptoms. The vast majority of people will be supportive if they know that you need a little help, and anyone who makes fun of you for having a medical problem is not worth your time. I would also encourage people to try lots of different treatments, as what might help one person could do nothing for the next one. There are a number of different diets, drugs and lifestyle changes that you can try; you don’t have to just “live with it”.