Diane’s Story – Bile Acid Malabsorption

Tell us a little about yourself 

I’m Diane, I’m 58 years old and live in Northumberland. My biggest passion is my gardening, and I share an allotment with a good friend, Brian, who is like a big brother to me. I’m a Buddhist, and I’m crazy about motorbike racing. I used to keep ferrets, so most of the local children call me ‘aunty ferret’!

When did your symptoms begin? 

I can track it back around 12 years ago, though my symptoms were minor at the time. I’d get bouts of sickness, diarrhoea and a lot of heartburn, but I knew it wasn’t food poisoning. I put it down to stress, as you do, but then it got really bad. 

One of my yearly health checks showed I had low iron levels, and it opened up a conversation with them about my digestive symptoms. They started investigating.  

But before that happened, COVID-19 hit and one day I was at home during lockdown when this abdominal pain just started searing out of nowhere. My stomach was so hard and bloated. If you touched me, I screamed. My GP refused to see me face-to-face, but I felt like I had a hot knife sticking in me. I was vomiting and had diarrhoea. Eventually I was seen by a nurse who took one look at me and said, “You look extremely unwell”. 

When were your gallstones finally found? 

I had an ultrasound, a CT scan and blood tests. They found the gallstones, and I was put on a waiting list for gallbladder surgery. I’ll never forget the day I had them removed. They said, “Would you like to have a look, there’s lots of them!” The stones were so pretty that I asked to keep them, but was sternly told, “No”. 

After the operation, I had diarrhoea for a few weeks but everything had gone to plan and I was sent home from hospital the day after. 

How were you in the coming weeks? 

After my gallbladder was removed, my diarrhoea just didn’t seem to improve like the doctors had told me it would. I was going to the toilet eight to ten times per day, and even more on the bad days. My poo was often yellow, and it would leave me sore. 

I am on a Facebook group for people with diverticular disease (as I have these pockets in my bowel), where I heard someone talking about Guts UK’s patient information on Bile Acid Malabsorption (BAM). No one had ever mentioned BAM to me before, but I read the information and thought, “This all sounds familiar!” 

At first, I spoke with a junior doctor who denied me tests for BAM. They said, “Your symptoms aren’t considered frequent enough for it to be BAM”. But when I went back to my GP surgery and told them how I was still struggling, they decided to give me the bile acid sequestrants (the treatment for BAM). The idea was that if the medication works for me, I most likely have BAM. 

My gastroenterologist referred me to a community dietitian. She told me not to eat nuts and seeds with my diverticular disease, and I kindly explained to her that this was old advice. A few weeks on, I had another appointment for which I didn’t feel hopeful. But I was so impressed! She had gone away, read up on Guts UK’s information and what I said. I was so pleased she didn’t take it personally, and she also helped me with avoiding too much fat with my Bile Acid Malabsorption. 

How are you doing now? 

Since taking my medication for BAM, I am doing so much better. So far, I haven’t had another episode of severe symptoms. If sharing my story today can help one person, then I’m duty bound to do it. For some people, it’s difficult talking about health, especially digestive health! But I’m comfortable talking about mine, so I should. 

I’m so pleased I found Guts UK. They listen, and it’s so often that we don’t feel heard. It is very lonely when you first get that diagnosis. If you’re lucky, someone might hand you a leaflet. Knowing there was a support network out there, people who care and listen, meant the world. I couldn’t have done it on my own.