James’ irritable bowel syndrome (IBS) story

Note: At Guts UK, we want our stories to be easy to understand for everyone. If any medical terms in James’ story are unfamiliar, you can find definitions in our medical glossary below. 

Tell us a little bit about you

“I’m James, and I’m 36 years old from Bath. I’m a big nerd really, building Lego, playing PC/RPG games and hitting the gym. I have a young dog called Oscar, and I love cooking, trying different cuisines, or drinking obscure teas/beverages! I enjoy my job as an account manager and trainer for a coffee roastery. I spend a lot of time in cafes and bakeries, eating cake and drinking coffee!” 

Can you remember when your Irritable Bowel Syndrome (IBS) symptoms began?

“I was travelling in Peru and ended up having a llama tikka masala. I got what was maybe dysentery, which then over the course of about eight months turned into a myalgic encephalomyelitis (ME) diagnosis, then a glandular fever diagnosis, and finally an IBS diagnosis.” 

When were you diagnosed with IBS?

“Reaching a diagnosis took around a year because there were so many possible explanations for my symptoms. When all the tests came back negative, it kind of circled back to IBS. I also have other health conditions but find that my IBS is often shrugged off. The NHS do a super job, but my experience with them interacting with my IBS is different to the way they deal with my other conditions. There’s a clear treatment plan (or at least treatment options) for my other health conditions, I feel like with IBS you’re left to ‘just deal with it’. I was left to find out my own information.” 

What are your symptoms?

“My IBS is mixed (IBS-M). The majority of the time, I have constipation. Most days I have cramping and a fair amount of bloating. Every few weeks though, I’ll feel intense cramping and I’ll know the diarrhoea is coming. Suddenly I’ll feel my body being desperate to empty all at once.”

How do you manage your symptoms?

“With the diarrhoea, I’ll do my best to relax, get enough sleep and cut back on the running and cardio exercises. Staying near a toilet helps with the worry of being caught short, and thankfully my work is really understanding if I need to work from home.

One of the biggest symptoms I have is constipation. I work in the coffee industry, and that massively helps me. Drinking coffee has become part of my routine. My gut expects it now, it helps regulate me – although I don’t recommend that volume of coffee, it’s just what works for me. Drinking a lot of water helps to solve that problem as well.

Peppermint oil can help my cramps and pain. But above everything is my practice of cognitive behavioural therapy and self-reflection. This makes me aware of the way I’m feeling. I can reflect on and understand my emotions, so they don’t have such a hold over me, and in turn, this helps me cope with my IBS.”

Have you noticed anything that can worsen your symptoms?

“Overeating or eating huge portions can make my IBS worse. I’m careful to keep to normal portion sizes. So much of it is about understanding your own individual tolerances and balance.

I find that stress can worsen my symptoms, whether this is my gut and brain talking or simply the fact that I eat ‘rubbish’ when I’m stressed and don’t sleep well! This is why self-reflection really helps, because I do believe my mood and emotional wellness have a massive impact on my IBS.

I’m fortunate to work somewhere understanding, with great people and a relaxed culture when it comes to talking about bowel habits. We were only recently laughing about never being able to trust a fart in the office!”

Do you find humour helps you talk about your IBS?

“I definitely find comfort in toilet humour, but I guess I’d rather have someone laughing with me than have them feel uncomfortable about what’s happening to me.

If I’m with close friends and I have to get up to go to the loo, I don’t try and sneak off. I make a thing of it. Sometimes I’ll think I need to go because I’m having a spasm or a cramp. I’ll disappear for half an hour because I don’t know if anything’s actually going to happen. Sometimes it does, sometimes it doesn’t.”

How do you feel about your IBS now?

“It’s been a long journey, and I don’t necessarily think my symptoms are any better. But what is better is the way that I deal with my symptoms.

Whenever I meet someone else with IBS, it’s like an instant bond! We’ll start telling each other about the worst thing that’s happened to us. Knowing other people experience what I do helps, I’m not the only person stuck on the toilet for hours from time to time!”

What advice would you give to someone struggling?

“First of all, don’t get drawn into the social media adverts with the miracle cures and the magic tablets. As tempting as they are, they don’t work. Find what works for you, and don’t forget to keep talking. You only have to find one person who relates to you, who understands, and you can lean on. It will take time to find what works for you, and it won’t get better overnight, but nothing in life does.

I’d also make your bathroom/toilet a place that you enjoy spending time in. Make sure it’s comfortable, make sure there are things to look at and read. I hate boring toilets. The back of shampoo bottles become old quickly!

I have no problem talking about my bowel habits if it helps someone else come to terms with theirs. I really believe you have to get to a certain level of acceptance to move past the worry and upset. There’s a power in self-managing your symptoms, and accepting them too.”

Glossary of medical terms

• Cognitive behavioural therapy: A type of talking therapy that helps people manage problems by changing thought patterns and behaviours.
• Dysentery: When an infection gives you diarrhoea with blood in it. 
• Glandular fever: A type of viral infection. 
• Myalgic encephalomyelitis (ME): A long-term condition that can affect different parts of the body and causes extreme fatigue. 

About Guts UK and the Let’s Talk Guts campaign

Guts UK is the national charity for the digestive system, providing information and support for people affected by digestive conditions and symptoms, including a dedicated Helpline.

Our Let’s Talk Guts campaign is aimed at reducing the stigma that so often surrounds digestive health by encouraging people to get to know their guts and feel more comfortable talking about them.