It’s scary to admit that you don’t know what’s happening to you

I was diagnosed with IBS after about one year of dating Aonghus (my issues had started long before I met Aonghus so there’s no relation between meeting him and my diagnosis!) and we moved in together about six months after that. He was always very supportive and interested in learning more about IBS, but it wasn’t until we were living together that the reality of the condition was apparent to him.

IBS symptoms are horrible. There’s really no other way to describe them. At the time, my main symptoms were urgent diarrhea and abdominal pain. I had accidents and didn’t make it to the toilet on time, on more than one occasion. It’s really distressing to have that happen to you!

It’s also really difficult to talk about. In fact, I never told my own GP (primary doctor) it happened to me – I only told my consultant gastroenterologist, and that was only during my second consultation. I sometimes talked about it with very close family and friends, but I always did it in a joking way. It’s scary to admit that what’s happening to you is distressing and you don’t know how to deal with it. There’s also such a taboo about talking about toilet issues.

She kept reassuring me that everything was likely fine…

I’ve also had so many bowel movements in one day that I started bleeding. It’s extremely alarming, as I’m sure you can imagine, to see bright red blood on the toilet tissue and in the toilet bowl. That is one symptom I did tell my GP about (and you should always visit your Doctor immediately if you see blood in your faeces, or vomit, or anywhere it shouldn’t be), and she was happy to reassure me that the bright red blood is actually okay, as it means the bleeding is happening lower down and isn’t happening deep inside your gut (which would apparently appear darker, almost black).

She said it’s likely nothing to worry about. Regardless, she swiftly sent a referral to a consultant gastroenterologist. Although she kept reassuring me everything was probably fine, the fact that this symptom had hastened the referral did frighten me a little. The consultant confirmed (after all the investigations were carried out) that my GP was right and it was nothing to worry about. But I still have to deal with it from time to time, and I have to constantly reassure myself that it’s okay. It’s tiring to deal with that.

Every time I ate something, I had diarrhoea that was unpredictable and urgent

The most worrying symptom for me was weight loss. Weight loss is not a typical symptom of IBS – but I didn’t know I had IBS at the time. All I knew was that every time I ate something, I had diarrhoea that was unpredictable and urgent.

I actually assumed I somehow kept getting food poisoning. I was confused, but I couldn’t think of anything else that could possibly be causing such horrible symptoms.

So, I started to avoid different types of food, and just ate less. I was afraid to eat meat in case it was undercooked, so I stopped eating all meat. I also avoided all dairy and fried foods. I thought anything with fat in it would give me diarrhoea. I mainly ate dry toast and bananas.

I also started avoiding a lot of social events. Since I couldn’t eat or drink anything without getting diarrhoea, I had to keep making excuses. I was exhausted most of the time. I remember leaving parties and concerts early because I didn’t have any energy left to even sit down. I missed a lot of work as well.

This went on for over 2 years. For over 2 years I was sick all the time, tired all the time, and pooping all the time.

By the time I had my first appointment with the consultant gastroenterologist, my weight had dropped worryingly low.

I called Aonghus and told him there’s nothing to worry about

My consultant was as concerned as I was, and he was thorough in his investigations. He performed a number of tests (colonoscopy, gastroscopy, barium enema, biopsy, blood tests, etc.) before coming to the IBS conclusion.

I remember the day he told me – he was smiling! I can understand that he was happy to tell me, a frightened 25 years old, that I didn’t need to worry – I didn’t have cancer, Crohn’s disease, coeliac disease, or diverticulitis – it’s ok, it’s only IBS! I remember laughing and saying thank you before I left. I called Aonghus when I was out in my car and told him there’s nothing to worry about, it’s only IBS.

Then as I drove home, I had to pull into a petrol station to use their toilet. Urgent diarrhoea had struck for the fourth time that day. They didn’t have public toilets, but the girl behind the counter must have noticed my distress because she let me use the staff toilets.

That was my first realization that even though I had been diagnosed with “Only IBS”, I still had the same symptoms as the day before, and would probably have them tomorrow as well.

“So, what can you do now?”

Aonghus and I talked a lot about what the diagnosis meant. Aonghus kept asking “so, what can you do now?”

I honestly didn’t know. My consultant and GP, who were both very diligent and kind professionals, didn’t really have much information for me. My consultant had mentioned something about being referred to a dietitian but didn’t really say why that could help, so I never followed up on it.

My GP suggested trying relaxing exercises like yoga. I had been doing Pilates for a long time but stopped going when the class moved to a new building where the only toilet was inside the actual class studio, surrounded by paper-thin walls. That was just too embarrassing for me to deal with. I couldn’t last through a class without needing to use the bathroom. Anyway, at that stage, I was so exhausted I couldn’t last through a full session.

Regardless, I felt that I should be grateful that it was Only IBS and not something more serious. I am thankful that I don’t have a more serious condition, but the symptoms are serious and they were seriously impacting my life. Constantly telling myself, and others, that it’s “Only IBS” kept me from pursuing ways to be healthy on my own.

It’s only through Aonghus’ persistence to find a solution to my problems that I am healthy and happy now. Aonghus has spoken elsewhere about how he approached figuring out a solution. You can read more about it here.

What I want to say here is something that I think I have in common with a lot of FoodMarble customers.

When I received my IBS diagnosis, yet still had all the same horrible symptoms, I felt really alone and hopeless. I believed that the rest of my life was going to just be all about avoiding food, managing symptoms, carrying extra clothes in my bag, and knowing where the toilets are at all times. I worried that I would start to lose friends because I kept saying no to events, canceling last minute, or leaving early. I was also worried that I would face difficulties at work for missing so many days.

I was also afraid of what was going to happen if I kept losing weight and didn’t stop. Honestly, I was simply not looking forward to the rest of my life, and I was only 25.

How can we get this to other people with issues like mine?

Then Aonghus started working on the project that would become the FoodMarble AIRE. It started on our small kitchen table in our rented apartment in Dublin. Aonghus eventually left his full-time job to focus on the work. The project quickly grew from something abstract to something tangible.

I remember taking some breath tests into the first prototype – it was just wires all bundled up in a small, brown cardboard box! When we saw that it worked on Aonghus’ laptop we were so excited! How could we get this to all the other people with similar issues to me?

Things started to fall into place. Lisa started working with Aonghus, and then all of a sudden, Aonghus and Peter were flying over to Shenzhen to take part in the hardware accelerator HAX. Peter had actually just submitted his PhD thesis the night before he got on the plane to China. While over in China, another HAX participant introduced Aonghus and Peter to James, a gastroenterologist – and then the founding team was complete.

I am no longer excluding foods from my diet unnecessarily

The hydrogen breath tester and app that Aonghus and the rest of the FoodMarble team have developed is a game-changer for people like me. Now, I can reliably track how I am digesting food and I can see how different meals affect my digestion. Importantly, I can see when symptoms are not caused by food.

For example, I still get a lot of bloating and some abdominal pain, even when my fermentation levels are low. When I look back through my logs on my FoodMarble app, I can see that the majority of symptoms happen when I haven’t had a lot of sleep. I can now nap at the weekends and nobody can criticize me!

This also means that I am no longer excluding foods unnecessarily from my diet. I used to completely avoid all dairy and wheat, as well as a large variety of vegetables and most types of meat. I now know how much of all these foods I can consume before I begin to experience uncomfortable symptoms. My diet is varied and healthy and I enjoy eating again. I still have IBS, of course, but I now have more confidence in how I manage my symptoms. I don’t avoid social events because of it anymore and I haven’t missed a day of work due to IBS in about four years.

I believe that the FoodMarble AIRE is the missing piece in IBS treatment. I’m so proud of what Aonghus and the whole FoodMarble team have achieved and of the small part I played in it.