Dave’s story – Irritable Bowel Syndrome (IBS)

Tell us a little bit about yourself 

“I’m Dave, I’m 65 and I’m from Garforth, Leeds. Now, I live nearby in Kippax. In the winter, I like to read and do jigsaw puzzles and crosswords. In summer, I like to garden, although that’s becoming increasingly difficult. I also volunteer at Yorkshire Wolds Railway.”

Can you remember when your IBS symptoms began? 

“From what I can remember, my symptoms of IBS first began when I was in my late 30s. I went through a period of considerable stress; I was the finance director of a company at the time, which was growing rapidly and undergoing significant changes which were difficult to manage.  

At the same time, my dad was very ill and was quite elderly. A couple of years later, he passed away. Following this, I also moved house. The stress built up. 

In my early 40s, I started to experience an urgency to go to the toilet. After some time, I eventually thought, ‘I better do something about it.’ I tried to identify if there were any foods triggering my symptoms. When I stopped eating certain foods, I found that the urgency to go to the toilet disappeared and for a while, things were better. (If a dietary cause is suspected, speak to your GP about simple first line dietary changes. They may refer you to a dietitian, who will try to identify any foods that cause your IBS symptoms). 

With IBS, however, your symptoms can improve and then come back. The unpredictability of it is one of the worst things.“

When were you diagnosed? 

“I don’t think I’ve ever received a formal diagnosis. When I was in my late 40s or early 50s, I had various tests, but nothing came back. My GP said, ‘I suppose you must have IBS.’ At the time, I wasn’t given any information or support. 

Later, I saw a consultant at a hospital and had every kind of test possible. All the tests came back negative. I saw a dietitian and the consultant recommended CBT (cognitive behavioural therapy, a type of talking therapy that helps people manage problems by changing thought patterns and behaviours), which wasn’t available on the NHS at the time. I arranged that myself, and things did improve, but only for a short time. My symptoms started when I started to reintroduce certain foods. 

I later had a stroke, and experienced constipation, which can be a common complication of a stroke. For a few months after the stroke, my IBS symptoms did improve. However, when my immune system was triggered by sickness, my symptoms got worse again. I find that whenever I get a cold or anything like that, my symptoms start up.”

What symptoms do you experience and how do you manage them? 

“The main symptom I have now is chronic wind. It’s no good trying to hold it, it’s got to come out or things get worse. It’s extremely difficult, especially socially. It has impacted me a lot, particularly my ability to socialise. I wouldn’t go to a crowded event or anything like that.  

I’ve been reasonably lucky so far with pain, but I do have bouts of it. There are some things I can’t do or find difficult, like gardening. Certain stretches or strains affect my stomach. I also have other health conditions, and I have found that some of the medications trigger my IBS. I do the best I can to manage my symptoms.”  

How do you find talking about your symptoms and condition to others? 

“It depends on who you’re with. Some people will listen, whereas with others, you can tell they don’t want to know. I’m fortunate that I have found people who understand. Some of my fellow volunteers at the railway have been affected by digestive conditions like Crohn’s disease and coeliac disease. Others have been affected by other health conditions. So, for all the wrong reasons, I felt welcome. 

Socialising became virtually impossible at one point, as I couldn’t go out to eat and stopped drinking alcohol. If I went out and could only eat certain things, I was surrounded by people talking about all the things they could eat and enjoy. It’s the emotional impact that’s hard and that’s what people don’t understand.“

How do you feel about your condition now? 

“I was grateful that I got to 40 before experiencing IBS, as lots of young people are diagnosed with bowel conditions in their 20s or earlier. I had no appreciation of digestive conditions; I could eat and drink whatever I liked.  

At one point, I didn’t want to do anything and was content to stay at home. But my sister and brother-in-law dragged me out and I quite enjoyed it. I’m grateful for that. You’ve got to make the best of the life you have. I’m not stuck in the house like I know some people can be. You have to look on the positive side of life, even though at times it’s hard.“ 

What advice would you give to someone who might be struggling with IBS? 

“There’s still life after a diagnosis of IBS. It’s an irritating and frustrating condition to say the least. It’s important to know what causes your symptoms and what affects you. Try to socialise if you can and try to minimise stress as much as possible, as it can make things worse. I know it’s difficult but try and maintain a positive outlook.”

Further information

If you are experiencing symptoms and suspect IBS, speak to your GP. It’s important that other conditions affecting the bowel, such as coeliac disease and forms of inflammatory bowel disease (IBD), such as Crohn’s disease and Ulcerative Colitis, are ruled out.  

Your GP might suggest simple dietary changes or keeping a food and symptom diary, to help identify possible triggers for IBS symptoms. They might refer you to a dietitian for specialist advice if you your dietary intake is limited. 

Find out more about IBS on our patient information page. 

About Guts UK

Guts UK is the national charity for the digestive system and the only UK charity funding research into the whole digestive system.

People are suffering. People are dying. All because of a lack of knowledge about our guts. Guts UK exists to change that. 

With new knowledge, we will end the pain and suffering for the millions affected by digestive diseases. Please consider donating today. Your donation will help fund research leading to earlier diagnoses, kinder treatments and ultimately, a cure.