As members of BAD UK we are now in the fortunate position of having a diagnosis of bile acid diarrhoea (BAD), are receiving excellent support from the BAD Specialist Clinical team (University Hospitals Coventry and Warwickshire) as well as having a regular forum to meet other people with our condition.
However, many of us have suffered unnecessarily for many years before finally getting an answer to the reason for our debilitating and life changing symptoms. Despite having unexplained and unpredictable BAD symptoms, these were not recognised as being clinically significant because the standard investigations we underwent for bowel conditions (colonoscopies, endoscopies, ultrasounds, MRI small bowel follow through, food allergen testing, blood tests and stool samples) came back as normal or not indicative of a known inflammatory bowel condition. Many were told we had irritable bowel syndrome and we just had to accept it, or, worse, that it was in our heads and that there was nothing physically wrong with us at all. For others symptoms commenced following removal of the gallbladder and for a smaller number of us BAD symptoms were not immediately recognised due to similar symptoms associated with Crohn's and Ulcerative Colitis conditions.
One of the symptoms of our condition is uncontrollable diarrhoea, an often taboo subject with socially embarrassing and debilitating consequences. Since our SeHCAT diagnosis we have all looked for information to help us understand the ongoing challenges of living with BAD. We have found that research, clinical evidence and patient information on the diagnosis and ongoing management of BAD is very limited. The true reality of living with BAD symptoms is inadequately conveyed, particularly the life changing impact this condition has on a person's life.
We believe that if there was more insight and awareness of the reality of living with our condition across the medical professions and general public, then more people who have symptoms of BAD would be recognised early and receive the essential clinical and emotional support to live life to the full. Whilst every BAD patient will be affected differently, the following section is our collective summary of the common symptoms and the impact BAD has had on our lives, both before and after our diagnosis.
Whether you are awaiting a diagnosis of your symptoms, have received a diagnosis of BAD, a family member or friend, or a clinician we hope that you find this section Living With BAD useful in understanding more about our condition.