After having her gallbladder removed Helen experienced severe bowel issues that had a hugely negative impact on her life. In this article, she shares her experiences of living with BAM and her route to diagnosis and treatment in a bid to help others understand the condition so that they can seek treatment quickly – help is out there.
In March 2022, my life changed when I underwent gallbladder removal surgery. While the surgery went smoothly, the aftermath was anything but. Almost immediately, I began to experience severe cramping, painful bloating, and chronic diarrhoea. At first, I believed what my consultant said during my post-operative appointment — that these symptoms were temporary and should ease within 12 weeks. Unfortunately, 12 weeks came and went, but the pain and discomfort persisted, becoming progressively worse.
By Christmas of 2022, the reality of my condition hit me hard. While having a family dinner at my son’s house, I found myself having to leave the table repeatedly to rush to the toilet. The embarrassment and anxiety overwhelmed me. It was no longer a minor inconvenience; it was severely affecting my quality of life. That night, I realized just how debilitating and isolating my condition had become.
I was hesitant to self-diagnose
After spending countless hours researching online, I came across information about a condition called Bile Acid Malabsorption (BAM), also known as Bile Acid Diarrhoea (BAD). Everything I read seemed to fit my symptoms perfectly, but I was hesitant to self-diagnose. So, after Christmas, I spoke to my GP without revealing my findings. To my surprise, she mentioned BAM as a possible cause and confirmed my suspicions.
She explained that BAM is a condition that sometimes occurs after gallbladder removal and referred me back to my consultant for further testing, specifically a SeHCAT scan, which is the gold standard for diagnosing BAM.
To make it clear there are different causes of BAM which is categorised into 3 types:
Type I: this is when there is a problem in the part of the small intestine (ileum) where re-absorption takes place. Causes include inflammation or removal of the ileum, due to conditions such as Crohn’s disease or cancer treatment.
Type II: this is when no definitive cause can be found and is known as primary bile acid malabsorption.
Type III: this can result from other diseases or conditions within the abdomen such as gallbladder removal, coeliac disease, chronic pancreatitis, radiotherapy or small bowel bacteria overgrowth.
It was the type III that I was suspected of having
My consultant, aware of my worsening symptoms and the long waiting time for the SeHCAT scan, suggested a practical approach. He prescribed a bile acid sequestrant — cholestyramine, a medication designed to bind to bile acids and prevent them from triggering diarrhoea. He told me if it worked, it would confirm BAM as the culprit. If it didn’t, we would explore other possibilities.
Cholestyramine, however, was not the solution I had hoped for. Although it was the only licensed treatment in the UK for this condition, it left me feeling nauseous, vomiting daily, and suffering from terrible headaches. After three months of enduring these side effects, I knew I couldn’t continue. My GP referred me back to the consultant, who prescribed Colesevelam, a tablet form of the binder. Though not officially licensed for BAM in the UK, it is often prescribed when cholestyramine fails. I’ve been on Colesevelam for 15 months now, and while it has helped, my journey has been far from easy.
Colesevelam brought its own challenges. It caused bloating and gas, and I had to carefully time other medications, including those for my fibromyalgia and migraines, to avoid interactions. The binder also interferes with the absorption of vitamins and minerals, leading to bouts of low B12 and folic acid, and I struggled with chronic fatigue. Finding the right dosage was another battle. I started with one tablet a day, but it did little to control the diarrhoea, which had become so bad that I was afraid to leave the house without taking several Imodiums. Eventually, I increased my dose to three tablets daily, but still found myself lost in a cycle of constipation and diarrhoea.
I turned to Facebook
By August 2024, I was at a breaking point. I felt isolated, anxious, and depressed, unsure how to move forward. I decided to seek support, hoping to find others who understood what I was going through. I turned to Facebook and found a group called “Bile Acid Malabsorption (BAM/BAD/BSM) Support and Advice.” Joining that group was one of the best decisions I could have made.
Through the group’s discussions and resources, I found validation and relief. I realized I wasn’t alone. Many others shared the same struggles and confusion about BAM, and much of the information I had been given by my doctors was insufficient. One key takeaway from the group was that the dosage instructions for Colesevelam, which are designed for high cholesterol treatment, aren’t ideal for BAM. Instead of spreading the medication throughout the day, many members recommended taking it all at once on an empty stomach. This simple change made a big difference.
Within weeks, my symptoms improved
I also learned that a low-fat diet alone wasn’t enough. Many in the group had found success with a low-residual fibre diet as well. This meant cutting out fruits with skins, seeds, or high fibre content, avoiding most green vegetables, and eliminating whole grains. Essentially, the foods I thought were healthy — salads, fruits, and whole grains — were making my condition worse. While this diet was a major adjustment, it finally offered some relief. Within weeks, my symptoms improved. The cramps became less severe, and the frequency of diarrhoea dropped dramatically — from 20-30 times a day to between 0-5. I was still battling bloating and gas, and I didn’t always have much warning before needing to use the toilet, but the improvement was significant.
I also found a balance with my medication. After experiencing some constipation on the low-residual fibre diet, I reduced my Colesevelam to two tablets a day and added psyllium husk capsules — a soft fibre supplement that helped regulate my bowel movements. The journey hasn’t been perfect, but I finally feel like I’m on the right track.
I now have tools and strategies to manage it
My experience with BAM has been exhausting, frustrating, and at times, deeply isolating. But finding the online support group gave me hope and a community of people who understood. This is a lifelong condition, and although I’m not completely symptom-free, I now have tools and strategies to manage it.
To anyone dealing with BAM, BAD, or BSM, my advice is to seek out support groups. You don’t have to go through this alone, and there’s valuable knowledge shared by others who have walked this path. While medical professionals may not always have all the answers, connecting with others who understand the condition can provide the hope and encouragement needed to keep pushing forward.
This journey is ongoing, but I’m no longer where I started. I’m sharing my story to raise awareness, to help others find relief sooner, and to let those suffering in silence know that they are not alone. There is help out there — you just have to look for it.
We’d like to thank Helen for her contribution to the Community, and for sharing her experiences.
Further Information
For more information on bile acid malabsorption please see this article on uhcw.nhs.uk . If you are struggling with symptoms similar to these, please ensure you reach out to your GP or healthcare practitioner to ensure you get some help.
You may find it helpful to speak to others who may be in a similar situation or read about how others have coped. It can be isolating to live with a health condition, and like Helen, we often hear of others who have found it useful to connect with others in a similar situation. Find out more about the Bladder & Bowel Community Support Group here.
