Sophia’s story – Bile acid diarrhoea (BAD)

Tell us a little bit about yourself

“I’m Sophia, and I’m 24. I live with my parents and sister, and I work as a library assistant. In my spare time, I love cooking and travelling.” 

When did your symptoms begin, and what were they?

“Me and digestive conditions go back quite a way! In 2015, I was diagnosed with gastro-oesophageal reflux disease (GORD). This is a common, chronic condition where stomach acid frequently flows back up into the oesophagus, causing symptoms such as persistent heartburn, acid regurgitation, chest pain, and potential swallowing difficulties. 

I’d also been experiencing bad stomach aches, urgency, bloating and fatigue and wasn’t sure what was causing them, so in 2019, I was sent to a specialist to investigate this. I was then diagnosed with irritable bowel syndrome (IBS). 

In 2021, I had gallstones and scans revealed my gallbladder was inflamed. I had my gallbladder removed. Unfortunately, my symptoms got worse a few months after this. I was using the toilet up to 10 times a day with diarrhoea and felt exhausted and bloated. I knew something else was wrong.” 

Note: Around 13 in 100 people may develop diarrhoea after gallbladder surgery, and this may not come on up until three months after the operation. If it persists, investigations should be carried out for bile acid diarrhoea (BAD), sometimes referred to as “bile acid malabsorption”. 

When and how were you diagnosed with BAD?

“In 2024, I had a SeHCAT scan. This is a two-part nuclear medicine test, used to measure how well your body retains bile acids. The results of this led to my diagnosis of BAD.” 

Can you tell us a little bit about how your diagnosis made you feel emotionally?

“Getting a diagnosis didn’t fix everything, but it gave a name to what I was experiencing. I felt believed. BAD has changed my life in ways people can’t see. For a long time, I lived with constant uncertainty. I never knew when symptoms would hit, and I was always scanning for the nearest toilet. I lost confidence and began to withdraw from parts of life that I used to take for granted, such as spontaneity, going out for meals with my friends and travelling. Everyday things felt stressful and scary and not normal. Food stopped being enjoyable, and my sleep was often broken. 

I might look fine on the outside, but inside, I can be exhausted. I’m still learning and understanding everything, and I know how it is important to be patient with yourself.” 

What treatment have you received for BAD?

“I’m currently taking colestyramine which is a type of bile acid binding medicine. It works by binding to the bile acid in the small intestine, stopping them from causing symptoms such as frequency and urgency. I also follow a low-fat diet.” 

Note: Some people find following a low-fat diet helpful and may be advised by their doctor to do so. It is important to speak to a medical professional before doing this. 

How are you now?

“I’ve been having bad acid reflux and trouble swallowing, so I’m awaiting an endoscopy (a thin tube with a small camera on the end inserted via the mouth) to check for other digestive conditions. This will be the third endoscopy I’ve had to date.” 

Why are you sharing your story today?

“I want to help others feel less alone and to raise vital awareness for the lesser-known digestive conditions, such as BAD. Digestive conditions that are “invisible” need to be taken seriously and understood sooner, so that people can get the treatment and support they need, when they need it.” 

How did you discover Guts UK?

“I found out about Guts UK when I was diagnosed with IBS. The hospital gave me one of Guts UK’s leaflets, so I went on the website and found out all about your lovely team! 

Digestive conditions are often invisible but can have many life-changing impacts. I want more people to feel understood and get answers sooner than I did. Nobody should have to wait for a diagnosis. Guts UK’s information empowers people to do this, and to advocate for themselves. Everyone deserves to be heard.” 

Can you tell us a little bit about your fundraising for Guts UK?

“I’ve taken part in Guts UK campaigns and raised £270 to date. Instead of birthday money, I’ve asked people to donate to Guts UK. It’s an accessible way to raise money, especially if unpredictable symptoms make planning a bigger event difficult.” 

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.

We provide information and support for people affected by digestive conditions like bile acid diarrhoea, including a dedicated Helpline.