Ian’s story – Irritable Bowel Syndrome (IBS), Gastroesophageal Reflux Disease (GORD) and Bile Acid Malabsorption (BAM)
Ian's stomach felt like it was on fire and he experienced a pain which, in his own words, he "wouldn't wish on anyone." His stools were often bright yellow and very liquid.
Tell us a little bit about you
“My name is Ian and I’m 44 years old. I live in Liverpool with my wife Victoria and our children. I spend most of my time with my family, watching Star Wars, football and aviation.“
Tell us about your diagnoses
What symptoms led to your IBS diagnosis?
“Around 20 years ago, I was diagnosed with IBS, with symptoms of stomach cramps and increased urgency to empty my bowels. I have had no prescribed treatment barring being told to follow a low FODMAP diet (this excludes food components collectively known as FODMAPs, (fermentable compounds found in some foods).”
What symptoms led to your GORD diagnosis?
“In 2009 I was diagnosed with GORD, with symptoms of heartburn and acid reflux. In 2013, I had a Nissen Fundoplication procedure (surgery to treat severe and ongoing acid reflux) for this. In this procedure, surgeons wrap the top part of your stomach around the lower part of your oesophagus. This makes a new valve. This worked well for eight years until I started having problems. I experienced a lot of belching and trapped wind, as well as heartburn, a constant bad taste and a dry mouth. I had scans and an endoscopy (a camera test down my throat) which showed that the valve created in surgery had slipped into my chest cavity. I am currently waiting for an appointment to see what’s next. “
What symptoms led to your BAM diagnosis?
“Around 2014, I was also diagnosed with BAM. I had been suffering with diarrhoea for a long time, accompanied with unbearable stomach cramps. My stomach felt like it was on fire. It was a pain I wouldn’t wish on anyone. I also experienced a burning sensation when emptying my bowels, which would leave me so sore. My stool was often bright yellow in colour and very liquid.
I received my diagnosis after years of tests which resulted in me being told nothing was wrong with me repeatedly. One doctor suggested doing a SeHCAT scan (a nuclear medicine test which is the main test used for a diagnosis of BAM). After the scan, I was finally told I had bad BAM and was prescribed medication that day. I now take a form of bile acid sequestrant which binds the bile acid in the small bowel, preventing it from irritating the large bowel.”
How did you end up in A&E?
“In 2022, I had severe heartburn and stomach pains. It was like nothing I’ve experienced before. I waited in A&E for 17 hours and got sent home, after being told it was likely to be my IBS. The pain increased so I returned to A&E and waited another 20 hours. This time, I was told I might have sludge in my gallbladder and was sent home again but with antibiotics. I still felt awful. Then, the violent shivering started. My wife phoned for an ambulance, and I was blue-lighted back to A&E. I was finally admitted, and my symptoms continued. The violent shivering increased, but I felt like I wasn’t able to alert anyone as I felt so horrible. After what felt like an eternity, my blood pressure was taken, and a team of doctors and nurses appeared to take blood tests. The results of these showed I had sepsis, and I was sent for an urgent CT scan.”
What complications followed?
“The scan revealed my gallbladder had burst and that there were abscesses on my liver. I ended up staying in hospital for three weeks. I was sent home and told I’d be back in for my gallbladder removed within weeks, but it took six months. Meanwhile, I was on antibiotics at home to keep the infection away and regular blood tests to check the sepsis was at bay.
After my gallbladder was removed, I initially felt good but then I couldn’t get off the toilet. It made my BAM much worse, which can happen after gallbladder removal.”
How did this impact you mentally?
“Up until I was admitted into hospital, my experience wasn’t great. But after admission the staff were amazing. I will be forever grateful to them for saving my life. Most days, I’m mentally and physically exhausted, and constantly sore. I don’t go out much in case I have an accident. It’s my wife, children and family that get me through, they are amazing and do everything they can for me.“
Why do you want to share your story today?
“I’ve followed Guts UK Charity for a while now and can relate to many stories that have been shared. I hope my story may help others as others’ stories have helped me.“
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.
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