Patients stories: living with irritable bowel syndrome (IBS)

My name is Jennifer, I’m 32 years old and I work as a product manager in the fashion industry.

Can you explain what is irritable bowel syndrome?

Irritable bowel syndrome is a chronic, invisible, and misunderstood digestive disorder.

What were your symptoms?

I had constipation that felt like daggers in my stomach, pain, spasms, nausea, and occasionally diarrhea. I also suffered from chronic fatigue.

My first symptoms, surprisingly, were food allergies, while I also developed Raynaud’s syndrome, where blood no longer circulates to extremities (hands and feet), leaving them extremely cold.

I had back pain that forced me to wear a corset belt at the age of 25.

How long did it take to get diagnosed?

I had these symptoms for 21 years before being diagnosed at the age of 29.

What made you seek medical advice?

I woke up one morning still extremely tired and very late for work. And I suddenly collapsed.

Where did you look for advice about your symptoms?

At first, I sought advice from my family doctors and gastroenterologists, but the answers were always the same: since I had been acutely constipated at the outset, they prescribed me lots of laxatives and didn’t look into it any further. I also saw rheumatologists but got no real answer until the last gastroenterologist told me about IBS and FODMAPs.

What are FODMAPs?

FODMAPs are fermentable sugars in food. For people affected by IBS, they can be a problem.

Did you know that the gut microbiota may be involved in IBS?

I knew my microbiota was involved as soon as the gastroenterologist told me that my diet was part of the problem. As soon as I changed to a low-FODMAP diet that replenished my microbiota, literally all my symptoms disappeared.

What’s it like living with IBS on a daily basis?

I manage the illness on a daily basis by maintaining a healthy lifestyle. I make sure to sleep well, I’m careful about what I eat, and I try to avoid as best I can any unnecessary stress that could affect my stomach and, therefore, my head.

What do you know about the gut-brain link in IBS?

I think IBS shows that the head and stomach are intricately linked. For me, the gut is even a precursor to the brain. When things go wrong in the stomach, they’re bound to go wrong in the head.

What message do you have for people with IBS?

I’ve so much advice for people with IBS that I’ve created a blog called foodmapers.com where you can find everything I have to share.

Listen to your own body, trust yourself. It’s not in your head. If you feel there’s something wrong, it may be due to your microbiota and the way you digest food.

I’ve been there. You can’t go on having x-rays and ultrasounds for another twenty years only to be told there’s nothing wrong. There must be something going on. And once it’s been diagnosed, there are plenty of things you can act on in terms of diet, stress and anxiety, and sleep.

In conclusion

Stay positive, but above all keep searching, don’t give up, and find health professionals who can support you and help find what’s wrong.

• Jennifer's blog FOODMAPERS

• Jennifer's podcast LES DIGÉRABLES

Hi, my name is Mihai, I’m 25 years old. I’m a secretary in a retirement home and I suffer from irritable bowel syndrome.

Can you describe irritable bowel syndrome?

IBS is a disease that affects the digestive system. It is benign. 

​​​​​​What were your symptoms?

Stomach pain, bloating, swelling. I wasn’t able to eat or drink what I wanted to anymore. My stomach rumbles, vibrates. It feels like I have a phone in my pocket and I lost 35 kilos in six or seven months.

What made you seek medical advice?

I developed IBS following acute appendicitis. I suddenly started having stomach pains. I had a lot of tests and visited the emergency room. They put me through various treatments but none worked.

​​​​​​​How long did it take to get diagnosed?

Between 2016 and 2022, I saw six gastroenterologists and then went back to the emergency room, where an intern told me “Well, I know what’s your problem, you have irritable bowel syndrome.”

​​​​​​​Where did you look for advice about your symptoms?

I looked for information from associations, like the French Association of Irritable Bowel Syndrome Patients (APSSII), where I’m currently a member, and also on Instagram and other social networks.

​​​​​​​The microbiota’s role?

I knew the microbiota was involved thanks to videos on the gut microbiota and information from associations such as the APSSII. I had videocalls with people who have the same problem and they spoke to me about the gut microbial flora.

​​​​​​​What’s it like living with IBS on a daily basis?

IBS is difficult to live with on a daily basis. I can’t take public transport anymore. I have to cancel nights out with friends because it prevents me from having fun. There are days when I want to do things, but can’t because my stomach tells me otherwise. I work and try to have a normal life but it’s complicated.

​​​​​What message do you have for people with IBS?

It’s about seeking advice and eating as well as possible given the circumstances. I’ve learned to live with the stress.

I feel relaxed now but I need to listen to my body and what I feel. That’s the most important thing, listening to your body.​​​​​​​

https://www.instagram.com/micolopathie/