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To: The NHS, International medical professionals working in Gastroenterology
Rename the condition Bile Acid Diarrhoea
Remove the stigmatising 'Diarrhoea' from the condition called Bile Acid Diarrhoea/Malabsorption, and call it something related to its pathology or name it after those who discovered it.
Why is this important?
We don't typically name conditions/diseases/illnesses based on their symptoms. Recently Bile Acid Malabsorption was renamed to Bile Acid Diarrhoea. We shouldn't label this condition by its already stigmatised and extremely horrid symptom.
From the age of 12 I have suffered from debilitating and soul destroying unpredictable diarrhoea. For 20 years I was told that I was 'probably just an anxious person' and 'must have a lot of intolerances' by medical professionals. It was so bad that I couldn't eat out, or really go on holiday, and some days, it made it hard to leave the house. I've had accidents when out with friends, family and at work. Honestly, it is absolutely soul destroying.
I would later find out that because I could actually leave the house sometimes, I had it better than some...
In 2017 I finally got answers as to why I constantly had diarrhoea; my digestive system had an overload of bile - I was constantly producing it (our bodies only usually discharged when we eat then reabsorb and produce if needed) so overall it was too much for my body to handle. It wasn't caused by anxiety/nerves, but it certainly caused a lot!
When I was diagnosed by an amazing consultant in 2017, the condition was known as Bile Acid Malabsorption. It was first discovered in 2008. It has three main types:
Type 1 BAD affects people who have BAD as a result of either inflammation of the small bowel due to Crohn's disease or surgical removal of the small bowel.
Type 2 BAD (previously referred to as idiopathic/primary bile acid malabsorption).
Type 3 BAD affects people with various gastrointestinal diseases such as removal of the gallbladder (Cholecystectomy), small intestinal bacterial overgrowth (SIBO), post radiation treatment for cancer, coeliac disease and chronic pancreatitis.
Research studies suggest that 1:3 people who have Irritable Bowel Syndrome with diarrhoea (IBS-d) as a prominent feature could have primary BAD.
Type 2 is the most prevalent, and is no other disorder affecting the small bowel. It's believed those with Type 2 BAD have a hormone defect - our bodies don't produce enough of the 'off' hormone to tell the liver to stop producing the bile. This is the biggest proportion of sufferers of the condition.
Estimates say that around 17% of the UK population suffer from IBS.
So, a nasty condition, that causes debilitating diarrhoea, and all the pain, low energy and serious mental health issues that go along with that. Top that with 1:3 of those diagnosed with IBS potentially having it, (that's 5.6% of the UK population, or roughly the same amount of the population who are diagnosed with depression*!), and you see it's a major concern to those who have it, and those who may have it.
Rightly, in 2017/2018, the NHS teams working on and with Bile Acid Malabsorption decided that the name didn't really fit with the latest findings - only one of the three causes was to do with malabsorption. They decided to call it Bile Acid Diarrhoea, because diarrhoea is the one thing all three causes had in common. Unfortunately for those suffering with the lifelong condition, this meant that we now have to explain to medical professionals, friends, employers, and anyone else who may need to know, that we suffer from bile acid diarrhoea, but the reality is that most people will just hear the "diarrhoea". As a sufferer, I want to be in some control over who knows what symptoms my condition comes with.
Though we completely agree that there should be no stigma around diarrhoea, or any other 'embarrassing' bodily conditions, the truth is that the new name of our condition is making it even harder to live with. Imagine if you had to explain an illness/disease/condition primarily by one of its symptoms - it's horrid, isn't it.
I therefore would LOVE to see the lovely and incredible medical professionals within our wonderful NHS and across the world rename our condition to something that doesn't include it's biggest and most embarrassing symptom, or even better perhaps after one of those who discovered it. This petition is by no means meant to offend those who worked/work so tirelessly in discovering the condition and how to treat it, and the wonderful charities that support it - they have changed all of our lives for the better. We just want to be able to talk about our condition openly, and not worrying how non medically trained people might perceive it.
We might not be able to cure the condition, but we can make it a little easier to talk to people about it.
*Source: 3.8 million in the UK suffer from depression according to https://digital.nhs.uk/data-and-information/publications/statistical/quality-and-outcomes-framework-achievement-prevalence-and-exceptions-data/quality-and-outcomes-framework-qof-2015-16, and 5.7% of the UK population is 3,591,000.