Lucinda’s Story – BAD/BAM

It took me 20 years to get a diagnosis of BAD/BAM

Originally published on: June 8th, 2022. Last modified on June 16th, 2022

Lucinda Barton suffered with what she was told was Irritable Bowel Syndrome for over 20 years, despite constant trips to her GP and several gastrointestinal specialists for tests and  following various diets over the years, her symptoms never improved. In fact, they got worse to the point she was virtually housebound.

A chance meeting on social media with Professor Julian Walter led Lucinda to start investigating Bile Acid Diarrhoea/ Malabsorption.

Here Lucinda tells her story of how that fleet twitter meeting has now changed her life…

Lucinda's Story - Bladder & Bowel Community
Lucinda, pictured with her son

“When I was 19 years old, I suffered with the most awful summer of stomach cramps and loose bowels. After numerous trips to my GP at the time, often in tears, I was told it was IBS (irritable bowel syndrome) and stress due to being a teenager . After pleading again for a bit more help, I was duly told to cut out all gluten and all dairy from my diet and to use Imodium to control my symptoms.

“This became a recurring conversation over the next twenty years. I cut out all dairy, all gluten, and I went on the FODMAP diet numerous times, all the while being told that this would cure my IBS, and yet I never had any real relief. I paid privately for scans and blood tests. They found out I had gallstones, but that they shouldn’t be causing the pain and diarrhoea I was experiencing. After I had children, my IBS was so bad that I could no longer work. I couldn’t socialise, even after taking a packet of Imodium I would still have sudden rushes to the bathroom. My food diaries made no sense; one day I would be fine, the next I couldn’t leave the bathroom. I  had blood tests and cameras in every space on countless occasions that proved nothing either. 

“Eventually, I found Prof Julian Walters on twitter, who was hosting an IBS chat and he floated the suggestion that I might have BAD – Bile Acid Diarrhoea/Malabsorption. I gleefully went back to my doctor who claimed they’d never heard of it. A further three gastroenterologists later (two private, one NHS) I was no further forward. 

“At this point I was put on antidepressants in the hope that this would help but it didn’t. I was then lucky enough to be put on my husband’s private health insurance through his work. They covered pre-existing conditions – including my IBS! I emailed Professor Walters’ secretary right away. I wasn’t expecting much as, over 20 years I had seen 14 different gastroenterologists, numerous GPs, 3 dieticians and 4 other specialists in case it was something unrelated. By this time, the Imodium had started to cause me to suffer with heart palpitations and a high heart rate*”.

Lucinda's Story - BAD/BAM Diagnosis
Lucinda has regained control of her life again - pictured with her dog

“Within two weeks I was up in London to have my SeHCAT test. A very simple test that I had been begging my GPs to do for three years. Two weeks later (and it felt like a very long two weeks) I received my results.

I was jumping up and down in tears with joy.

After 20 years I had a true diagnosis! 

“I had moderate to severe primary bile acid diarrhoea (BAD). He hurriedly assured me in the same email that this was a good thing. I would like to add that I was jumping up and down in tears with joy. After 20 years I had a true diagnosis! He informed me to take a sachet of cholestyramine once a day as he believed this would make a significant difference. He also told me to check out bad-uk.org which was a HUGE help. 

“Within three days there was a HUGE, HUGE change. In fact, six months later I’ve been on a couple of holidays, days out with my family, and meeting up with new people and been to new events. Between the sachets and eating a low fat diet (below 40g a day) I have slowly regained control of my life. I am back to eating gluten after 20 years. My diet has expanded greatly, I can eat out as long as I remain low fat & dairy free and my world has changed. 

“Had I never come across Professor Walters, I suspect I would still be attached permanently to my bathroom and never leaving home. BAD/ BAM is often misdiagnosed as IBS-D (irritable bowel syndrome with diarrhoea) and I am still rather angry that so many specialists in this field do not have the understanding or awareness of this.

I would suggest that anyone who is living with chronic diarrhoea and has tried treatments and diets for IBS to no avail, consider going back to their GP and ask to be tested for Bile Acid Diarrhoea/ Malabsorption.” 

Further Information

For more information on bowel conditions, visit our information hub where you can find out about treatments and find additional resources. You can also find out about BAD/BAM (Bile Acid Malabsorption) visit https://www.bad-uk.org

*All side effects are individual to the patient. If you are experiencing any side effects from any type of medication, please contact your GP for advice.