Living with Bile Acid Malabsorption

By Debbie, Disorder of bile acid synthesis, with cholestasis and malabsorption, United Kingdom, February 13, 2020

In 2006 I had my gallbladder removed. Little did I know of the consequence. The Gallstones went and for ten years my IBS seemed to improve. However, nothing could prepare me for the next chapter of my life. In 2016 I began to have explosive diarrhoea. At first, I thought I had a virus. But it didn't go away. It was green, foul, explosive and disabling. I soon became housebound, afraid to venture out.  It came on immediately and without warning. I lived on Imodium and cut most things from my diet, still nothing seemed to help. I stopped going out socialising and thought my life was over. I was 43 years old.  My friend who had crohns thought I had the same. I was extremely worried as I knew this was not normal. I knew it wasn't just IBS.

I visited the G.P who referred me to a consultant. Over a period of 18 months, I had an endoscopy, sigmoidoscopy tests for bacterial overgrowth and a colonoscopy. All came back negative. My bowels were healthy. What a relief. Although I didn’t understand why was this happening?  Even though I explained to the Drs I had explosive diarrhoea, which I could only describe as projectile. I'm not sure they realised how bad it was. In fact, one GP wrote "she says she has diarrhoea but is overweight and is in fact not losing weight! " I'd go to friends for a meal and immediately had to run to the loo. In fact, they had a joke that they should be sat wearing rain macs. I laughed. It was embarrassing though.

The Anxiety that I might not get to the loo in time made me a nervous wreck. I became severely depressed. I withdrew completely from life.  I began to research online. I knew that there must be an explanation. I knew it wasn’t just my IBS which I had been diagnosed with in 1994. Luckily my research paid off and I came across an article about a lady who had had diarrhoea for over 40 years, after having her gallbladder removed. She had a diagnosis of bile acid malabsorption. This was a rare condition and the fact that I’d had my gallbladder out made me wonder if I could have it. Although in fact it had been 10 years since my surgery, still I had a gut feeling, and nothing to lose. I made an appointment at the health centre and spoke to a GP. I explained the situation and asked if I could try some bile acid binders. She prescribed colestryamine. The first sachet I took. I managed to get through the morning without visiting the loo ten times.

Hey Presto!  The sympathetic GP wrote to my consultant. There’s only one test for bile acid malabsorption called a Sehcat. He said he didn't need to do the Sehcat as there was no need if the binders helped. But he would order the test if I wanted, for my peace of mind.  I needed a definite diagnosis. I had the Sehcat nearly 2 years after being referred. It was positive. I received a letter that was only two or three lines. It said you do have bile acid Malabsorption as we thought. And that was that.  Since then I can't say things have changed much. I can't take the 4 sachets per day as prescribed as I take a lot of other meds including thyroxine and pain medication. I itch and am constantly nauseous. I still don't go out much. I never know when it will strike, can’t plan ahead and have to let people down. I get flares of pain and cramping and feel generally unwell. It causes vitamin deficiencies and leaves me weak. The binders have side effects and sometimes my tummy is so swollen I look like I've swallowed a balloon. One of the things I hate the most though are the eggy burps (but I’ve come to realise that at least when they come it's sometimes a warning.) I can have a few good days and then a few bad days. 

The Anxiety is still there. Always will be. I always have to know if there is a toilet nearby, as still I just can’t wait, when it flares it flares and so socialising is challenging to say the least. I carry a radar key and cards that show I need to use a disabled toilet. In case I am challenged. Which I have been. In fact, I have been told off by a member of staff who told me to use the upstairs loo in a pub.  I was too embarrassed to explain, and too scared I wouldn’t reach the loo In time,  so had to leave very upset. I know people cannot possibly understand the impact it has had on my life. Overnight it happened and now I can't remember what having a normal life was like. I know there is no cure and only 1 in 100 people are diagnosed. I suppose I am one of the lucky ones at least I now have a diagnosis. How can people understand the constant fear and living your life worried? There’s no quick fix, it’s a lifetime condition and binders don't always work. There will always be flares and pain and worry. It's still early days. I've joined a group where people do understand as they have the same condition. I love the fact that there is humour as I would surely crack up if there wasn't. I'm not sure what the future holds. Hopefully by spreading awareness there will be research and funding. But all I know is I will never be the same. I will never be carefree or free from worry.

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