Abbie’s story – Functional Gastrointestinal Disorder

"When I first got the diagnosis, I thought it was my fault and felt like I was doing this to myself."

Tell us a little bit about you

I’m Abbie. I live in Bristol with my mum and sister and I’m 21 years old. I’m not currently working or studying because of my health, but I was due to study medicine in Edinburgh. I’m hoping to be able to reapply to medical school this year. In my free time, I like to dance and go to the gym, as well as things like baking, painting and reading.

When did your digestive symptoms begin?

I had just started year 13, coming back to school after COVID, and had started medication for my Obsessive Compulsive Disorder (OCD). I experienced diarrhoea, discomfort and bloating, and I lost around a stone in weight. I stopped the medication, but my symptoms continued.

Abbie is in a bathroom and sat on top of the toilet with the seat closed. She is smiling at the camera with her hair down and wearing the navy Guts UK T-shirt with a pair of blue jeans.

In 2023, things got exponentially worse. I urgently needed the toilet up to ten times a day. I then began spending hours at a time on the toilet. It was really scary how quickly things progressed. I had diarrhoea but eventually became very constipated and developed faecal loading (build-up of poo) throughout my colon, as well as mucosal prolapse (when the inner lining of the bowel slides out through the back passage). At one point, I didn’t leave the house for over three months.

I’ve had the same GP since I was a child, and she’s always been so compassionate and understanding. I never felt as if I had to convince her to believe me. I was referred to a gastroenterologist and colorectal surgeon. Undergoing many tests and treatments was exhausting, especially when they had side effects.

When did you receive your diagnosis?

A Guts UK cartoon of a pink oesophagus, stomach and intestine sat down with a sad face wearing black shoes.

At the end of 2023, though the word ‘functional’ had been mentioned before. I contacted my consultant and they explained that because we had ruled out many conditions, such as IBD (Crohn’s disease and ulcerative colitis), my diagnosis is likely a functional gastrointestinal disorder. Since then, I’ve been working with my clinical psychologist on a rehabilitation and treatment plan involving daily activities such as exercise and getting out and about.

When I first got the diagnosis, I thought it was my fault and felt like I was doing this to myself. But in reality, functional disorders are caused and maintained by so many different factors and nobody chooses to get into this situation. It took a lot to remind myself that it wasn’t my doing and there are many vicious cycles at play. It was validating to finally have a name for everything I was experiencing.

Why did you decide to fundraise for Guts UK?

I found Guts UK’s website when my symptoms were at their worst. They had a full list of conditions and it was so helpful to find a reliable source that covered so many things. It made my research a lot easier! I knew the names of different conditions and what tests to ask for, which was so empowering at a time when everything else was spiralling.

Abbie is standing in a bathroom with a mirror and towels hanging behind her. She is smiling at the camera and wearing the navy Guts UK T-shirt with her hands placed on her stomach.

In January 2024, I was on a walk and had the idea to fundraise for Guts UK! I decided to complete 500 miles in March through a mix of walking, running and cycling. It was important for me to have options other than running, which can be difficult when my symptoms are bad. It feels so important to share my story, give back and help people in similar situations.

How is your fundraising going?

As soon as my fundraising page went live, the response was so lovely and overwhelming. People have been donating what they can, or if they can’t donate, they’ve been sharing my post / sending messages of support. I was worried about not raising ‘enough’, but I’m so glad I decided to do it. If you are on the fence about whether to fundraise, please go for it! Chances are, you’ll be pleasantly surprised by the response you get! Fundraising is a collective effort – if enough of us across the country all do our little bit, we can have a huge impact! It’s also not just about how much you raise but about starting open and honest conversations about digestive health.

Abbie is standing in a white tiled bathroom. She is smiling facing the camera with her eyes staring to her right. She is wearing the navy Guts UK T-shirt and holding a toilet roll with both her hands.

To anyone reading this, please know that there’s no shame in talking about your digestive symptoms. Sadly, digestive issues are so common – you really aren’t alone. Don’t suffer in silence, blame yourself or dismiss your symptoms; you know your body better than anyone and deserve to be heard and supported.

Guts UK cartoon of a woman wearing a yellow hijab, black long-sleeved top and long pink dress while shaking hands with a female researcher who is wearing transparent yellow glasses in a white lab coat and black trousers. Both cartoons are smiling at each other. Guts UK is the only UK charity funding research into the digestive system from top to tail; the gut, liver and pancreas.

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.