Rebecca’s Story – Bile Acid Malabsorption

Rebecca was diagnosed with Bile Acid Malabsorption. For years she was told it was Irritable Bowel Syndrome, but Rebecca knew there was something else going on.

When did your symptoms begin?

My first noticeable symptoms started when I was 12 years old.

I had chronic diarrhoea that gradually worsened throughout my teens until it became unbearable in my 20s. Unfortunately, the first gastroenterologist I saw I found unhelpful. She told me I had “the world’s most sensitive stomach” and that I had Irritable Bowel Syndrome (IBS). I was diagnosed with IBS when I was 18/19, but felt this just wasn’t the right diagnosis for me. I was having symptoms that just didn’t fit with everything I’d read about IBS.

What were your symptoms?

I was struggling daily with stomach pain, fatigue and bloating. This gave me a lot of anxiety because I was worried about having flare up at school, then eventually at university or work. To prevent flare ups and the subsequent anxiety, I just stopped eating when I needed to leave the house or when I knew I was leaving the house. This was the only way I could control my symptoms. I lived like this for 14 years.

How were you diagnosed with Bile Acid Malabsorption/Bile Acid Diarrhoea?

A new GP started at my surgery. I really felt that I was being listened to and things started to change. Before that, I felt that I had been unsupported and dismissed.

Thankfully, my new GP listened to me. The GP referred me to gastroenterology. She organised simple tests that other GPs hadn’t. She also recommended that I see a dietitian. I was reluctant at first because I had already tried the recommended diet for IBS (FODMAP). But seeing this dietitian was key in my journey to diagnosis. She was the most helpful clinician I have spoken to! She told me that, based on my symptoms, I should push for a ‘SeHCAT scan’ for Bile Acid Malabsorption (BAM).

When I asked my gastroenterologist for the scan, he was reluctant to organise it. As I didn’t have coeliac disease, crohn’s disease or ulcerative colitis, he disregarded me having BAM. It did take a while for it to be organised.

How did you feel after you received your diagnosis?

I went into shock. I had fought so hard for years to understand what was happening with my body. I never thought I’d see the day I had a diagnosis. I got my results whilst I was at work, surrounded by lovely and supportive colleagues who already knew about my journey. I called my mum as she’s the one that had been fighting with me for a diagnosis. I was so relieved I had answers and that the pain wasn’t ‘in my head’. I’d felt dismissed by medical professionals. I had suffered immensely for so long not knowing what was wrong and it all could have been avoided.

Thankfully, my care has now been transferred and so far, so good!

Why have you decided to share your story today?

I really feel there isn’t enough awareness surrounding BAM. I had never even heard of this condition before speaking to my dietitian. There is an abundance of awareness and information about IBS and Inflammatory Bowel Disease (IBD), but not the same for BAM. More people need to know about this condition, the symptoms of BAM and know when to push for a SeHCAT scan.

I also hope that by sharing my story I can help another person in my position, who might be feeling unsupported and alone.

Why do you feel Guts UK’s work into this misunderstood and underfunded area is so important?

Guts UK is such a champion in raising awareness of gastroenterological conditions, including BAM, and has proven extremely helpful in my journey. When I was made aware of BAM and started to do my own research, Guts UK was one of the very few websites I found that could actually give me helpful, reliable information on the condition. I couldn’t even find an NHS page about BAM.

Guts UK provided such helpful information for me. At the time, this was so important to me because I identified with the symptoms of the condition. It gave me the confidence to push for testing.