How bad is bile acid diarrhoea:an online survey of patient-reportedsymptoms and outcomes

Ayman Bannaga,1 Lawrence Kelman,2 Michelle O’Connor,2,3 Claire Pitchford,2

Julian R F Walters,4 Ramesh P Arasaradnam,1,5,6

To cite: Bannaga A,Kelman L, O’Connor M, et alHow bad is bile aciddiarrhoea: an online survey ofpatient-reported symptomsand outcomes. BMJ OpenGastro 2016;3:e000116.doi:10.1136/bmjgast-2016-000116

Received 31 July 2016Revised 2 September 2016Accepted 13 September 2016

1Department ofGastroenterology, UniversityHospital Coventry andWarwickshire, Coventry, UK2BAM Facebook Group,Coventry, UK3BAM Support UK, Coventry,UK4Digestive Diseases Division,Imperial College London,London, UK5University of Warwick,Coventry, UK6University of Coventry,Coventry, UK

Correspondence toProfessor RameshP Arasaradnam;r.arasaradnam@warwick.ac.uk

ABSTRACTObjectives: Bile acid diarrhoea (BAD) is anunderdiagnosed condition producing diarrhoea,urgency and fear of faecal incontinence. How patientsexperience these symptoms has not previously beenstudied. Bile Acid Malabsorption (BAM) Support UKwas established in 2015 as a national charity withobjectives including to provide details regarding howBAD affects patients, to improve earlier recognition andclinical management.Design, setting and main outcome:A questionnaire was collected anonymously by BAMSupport UK and the Bile Salt Malabsorption Facebookgroup over 4 weeks at the end of 2015. It comprised56 questions and aimed to inform patients andclinicians about how BAD affects the respondents.Results: The first 100 responses were analysed. 91%of the respondents reported a diagnosis of BAD. 58%of total respondents diagnosed following a Selenium-homocholic acid taurine scan, 69% were diagnosed bya gastroenterologist, with type 2 and 3 BADcomprising 38% and 37%, respectively, of totalrespondents. Symptoms had been experienced formore than 5 years before diagnosis in 44% ofrespondents. Following treatment, usually with bile acidsequestrants, 60% of participants reportedimprovement of diarrhoea and most reported theirmental health has been positively impacted. Just overhalf of the cohort felt as though their symptoms hadbeen dismissed during clinical consultations and 28%felt their GPs were unaware of BAD.Conclusions: BAD requires more recognition byclinicians to address the current delays in diagnosis.Treatment improves physical and mental symptoms inthe majority of participants.

INTRODUCTIONBile acids are produced by the liver, secretedinto the duodenum and are necessary forlipid absorption in the small intestine. Bileacids are absorbed from the ileum by specifictransporters and undergo an enterohepaticcirculation where they are resecreted by theliver. When disruption of the absorption of

the bile acids in the ileum occurs, bile acidsreach the colon in excess amounts, and thisleads to increased secretion, acceleratedtransit and hence diarrhoea. This disruptioncan be due to inflammation, as in Crohn’sdisease and/or ileal resection; this type ofdiarrhoea is known as bile acid malabsorptionor secondary bile acid diarrhoea (BAD).Conversely, primary BAD occurs in those withan intact gut, often seen in those previouslythought to have diarrhoea predominant irrit-able bowel syndrome (IBS) and appears to bethe result of excess synthesis.1–3 BAD is com-monly reported after cholecystectomy andsome other gastrointestinal conditions; a clas-sification based on the order they were recog-nised is commonly used (box 1).4

It is estimated that 1% of the populationare affected by BAD. One out of threepatients with IBS can also have BAD.5

Symptoms of BAD are debilitating andimpact considerably on daily activities ofpatients due to urgency to go to the toilet,increased bowel frequency and the fear ofincontinence. BAD can be diagnosed bymeasuring faecal bile acids or theSelenium-homocholic acid taurine(SeHCAT) test. The Se-labelled bile acid isadministered orally and the total body reten-tion is measured with a gamma camera after7 days. Retention value of <15% is consid-ered abnormal and indicative of BAD.6 Themainstay of treatment for BAD is bile acid

What is already known about this subject?

▸ Bile acid diarrhoea (BAD) is an under-recognisedcondition.

▸ Symptoms of BAD are debilitating and negativelyaffect daily activities of affected individuals.

▸ Recent research recommendations advise on theuse of Selenium-homocholic acid taurine scanand bile acid sequestrants in investigation andtreatment of BAD, respectively.

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sequestrants (BAS). The three commercially availableBAS are colestyramine, colestipol and colsevelam. BASbind to the bile acids to prevent the secretory effects ofbile acids on the colon, hence improving diarrhoea inthe majority of patients who have BAD.Early diagnosis of BAD is predicted to lead to

decreased morbidity, increased quality of life and fewerreferrals to the gastroenterologists.7–9 However, little isknown about how people with this condition experiencetheir symptoms, diagnosis and treatment. Patientsupport groups have only recently been established. Thismanuscript reports the findings of the first study ofpatient-reported symptoms and outcomes.

METHODS AND DESIGN OF STUDYThe study was designed by BAM Support UK. This is anational charity group set up in April 2015 in Coventry,UK, with the main aim to increase awareness about BAD(http://bamsupportuk.org). Its vision is to empowerpatients to live life to the full and build a network oflocal patient groups across the UK to provide supportand improve earlier recognition of the condition andongoing clinical management.BAM Support UK, with help from the Bile Salt

Malabsorption Facebook Group members (currentmembership exceeds 1300), conducted an online ques-tionnaire via a Facebook link page. The questionnaireincluded 56 different questions divided into demog-raphy of the respondents, how and when diagnosis wasmade, symptoms before and after treatment and differ-ent types of diet used by the respondents.The main outcome was to inform patients and clini-

cians about how BAD affects the responders. The ques-tionnaire was collected anonymously between Novemberand December 2015 and analysed when 100 responseshad been obtained. Patient responses were collated andanalysed. Statistical comparisons of frequencies of symp-toms before and after treatment were compared by two-tailed Fisher’s exact test.

RESULTSThe total number of respondents was 100 comprising 91(91%) women and 9 (9%) men. Nine respondents(9%) were excluded from the results because they hadnot been formally diagnosed with BAD. The rest of thisanalysis will focus on the responses of those who havereceived a diagnosis (91%) as the sample group of those

undiagnosed is too small to have any statisticalsignificance.

DiagnosisAt the time of the diagnosis, about half (52%) of therespondents were aged between 36 and 55 years, with20% aged 56 years or above. The majority of respon-dents (79%) lived in the UK, while 14% lived in NorthAmerica.Sixty-nine per cent of the total respondents have been

diagnosed after consulting a gastroenterologist.Fifty-eight per cent (n=58) of the total respondents werediagnosed following a SeHCAT scan. Thirty-three percent (n=33) of the total respondents were diagnosed fol-lowing a successful trial of bile binding medication or bysymptoms alone. Patients with type 2 and type 3 of BADrepresented 38% and 37%, respectively. Sixty-seven percent of patients with BAD were diagnosed with IBS.Seventy-eight per cent of respondents had more than

one test before diagnosed, while 59% had more thantwo tests. Most of the respondents were investigated by alower gastrointestinal endoscopy in addition to bloodtests. Twenty-nine per cent of the respondents who hada SeHCAT scan had severe BAD with a retention scoreof 5% or less (figure 1).

SymptomsForty-four per cent of respondents had experiencedsymptoms for more than 5 years before diagnosis, withthe range being between 1 and 30 years. The frequencyof individual symptoms and the change after treatmentis shown in figure 2. These symptoms included explo-sive, offensive, smelly or watery diarrhoea (recorded as‘always’ or ‘mostly’) in 80%, urgency in 85%, abdominalswelling/bloating in 54%, pain in 59%, at least occa-sional incontinence in 88% and also wind and tiredness.Around 60% of participants experienced a reduction indiarrhoea following treatment, so that only 17% stillexperienced this as ‘always’ or ‘mostly’ (p<0.001 Fisher’sexact test) and a similar reduction was found forurgency (p<0.001). Just over 40% occasionally experi-enced constipation since being diagnosed and treated.Fifty-two per cent of respondents felt they needed to be

in close proximity to a toilet due to an increased urgency;following treatment, 51% of respondents report that theyonly experience this symptom occasionally.Nearly 40% reported that they always experienced

extreme tiredness before diagnosis which has droppedto quarter of the respondents following treatment.Headaches, dizziness and ‘feeling as though you maycollapse’ were symptoms that improved after diagnosis(figure 3). Thirty-five per cent of respondents reportedthat they still have nausea which has slightly increasedbefore initiation of the treatment for BAD.

TreatmentNinety-four per cent have been prescribed medicationto control their symptoms. Of these, 22% have had to

Box 1 Types of bile acid diarrhoea

Type 1: Bile acid malabsorption, secondary to ileal resection, orileal inflammation (Crohn’s disease).Type 2: Idiopathic/primary bile acid malabsorption.Type 3: Secondary to various gastrointestinal diseases (cholecyst-ectomy, small intestinal bacterial overgrowth, post radiation,coeliac disease, chronic pancreatitis).

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pay for a private prescription and 13 people in the UK(13%) have had to pay privately for a prescription forbile binding medication.Just under a quarter of respondents reported that they

are taking different types of bile binding medication.The majority of respondents were taking colestyramineas treatment. Fifty per cent of respondents were takingthe more expensive tablet version of bile binder colese-velam. Sixty-one per cent of respondents received a pre-scription from a gastroenterologist and nearlyone-quarter received prescriptions from a combinationof consultants, GP’s and other healthcare practitioners.Exactly half of the cohort have been prescribed lopera-mide by health professionals and 46% have received pre-scriptions for medicines other than bile binders andloperamide. The most common of these are combina-tions of drugs, including amitriptyline, vitamin

supplements, codeine-based painkillers of differingstrengths and proton pump inhibitors, for example,omeprazole. About 36.5% of respondents are also usingover-the-counter drugs to complement the prescriptionsfrom health professionals. These include vitamin supple-ments, psyllium husk and indigestion medications.

Mental health and well-beingIssues relating to well-being and mental health were verycommon and included embarrassment (reported as‘often’ or ‘sometimes’ in >90%), nervousness leavinghome (>90%), depression, isolation, helplessness andlow self-esteem (all >80%). Most respondents to thesurvey reported that their mental health has been posi-tively impacted by the use of bile binding medication. Inalmost all areas, there was an improvement, but most

Figure 1 Severity of bile acid diarrhoea according to SeHCAT 7-day retention values.

Figure 2 Comparison of bowel symptoms before and after treatment.

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significant improvement was seen in areas of embarrass-ment, low self-esteem and feeling nervous leaving home.Almost all respondents have had a positive impact on

their employment since beginning treatment. Thesurvey shows that most people feel well supported bytheir immediate family; however, 44% of respondentsfeel the support they receive at work is not adequate.Although treatment seems to improve patients’ ability towork, it seems that there is still not enough support inthe workplace (figure 4).Of those people who feel unsupported by their friends,

family and work colleagues, 37% feel as though they wereunable to discuss their medical issues with the people

closest to them, 42% feel as though others would notbelieve them if they share details about their condition andjust over a quarter feel as though they are a burden toothers. Other reasons given for not feeling supportedinclude others being ‘rude or insensitive’, not understand-ing the severity of the condition or being told ‘it’s just IBS’.

Dietary changesJust over one-third of the respondents are following mul-tiple exclusion diets to control the symptoms of BAD.Seventy-eight per cent of respondents specifically avoidcertain foods in their diet. The most commonly avoidedfood is dairy, which includes milk and cheese. High-fat

Figure 3 Comparison of other physical symptoms before and after treatment.

Figure 4 Impact of bile acid diarrhoea on ability to work.

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foods are the second most frequent trigger foodreported by respondents in this group. Other dietsexcluded by the respondents were sugar-free diet, lowfermentable oligosaccharides, disaccharides, monosac-charides and polyols (FODMAP) and low-fibre/low-residue diets. Vegetables and onion/garlic are also alarge trigger group of foods for BAD sufferers.One-third of respondents follow a specific diet to tryand control the symptoms. Table 1 shows the mostpopular exclusion diets selected by respondents. Despitefollowing a low-fat diet, 75% of respondents report thatthey are more likely to gain weight with this conditionand they are more likely to gain 5–10 kg with this condi-tion. However, some respondents have reported signifi-cant weight loss since their symptoms began (figure 5).

Contact with health professionalsNinety-two per cent of respondents reported that theyconsulted a medical professional before diagnosis withBAD. Of these, 19% saw only their GP and 43% sawtheir GP and a gastroenterologist. Almost three-quarterssaw multiple healthcare professionals before diagnosis

with the condition, including GPs, gastroenterologists,dietitians or surgeons. Three-quarters of respondentsreport that they are currently under the care of amedical professional, leaving 26% of respondents notreceiving medical support. Thirty per cent report beingunder the care of more than one health professionaland just over half are under the care of their GP.Of the respondents that were unsatisfied with medical

care they received, 35% felt like they were not taken ser-iously by the medical professionals consulted. Just overhalf of the cohort felt as though their symptoms weredismissed and 28% encountered GPs who were unawareof the condition. Thirty-nine per cent were told bymedical professionals that nothing could be performedabout the symptoms they were experiencing. Eighteenrespondents reported that their GP refuses to prescribethe tablet form of bile binding medication after theyhave been diagnosed.However, the most frequent reason given for patients

feeling very disappointed with their medical care follow-ing diagnosis is that the medical staff do not seem tohave an understanding of BAD. Thirty-nine respondentsfelt that the medical professional they have seen fortheir condition did not understand BAD and 23 respon-dents felt that there was a lack of coordination betweendifferent medical professionals that they have beenseeing.Two-thirds of the patients had received a diagnosis of

IBS from medical professionals before being diagnosedwith BAD. Thirty-one per cent reported between 1 and10 interactions with medical staff before receiving a diag-nosis, while 38% of patients reported 20 or more inter-actions with medical professionals before receiving adiagnosis of BAD.

DISCUSSIONThis survey conducted by patient groups providesinsights into how patients perceive their symptoms andoutcomes in BAD. These include a long history of boweland mental health symptoms. Patients reported thattheir quality of life and productivity were negativelyaffected and they experienced lack of support at theirwork place. Many avoided certain types of food in anattempt to help control their symptoms. Treatment withBAS offered significant reduction in physical and mentalsymptoms.Patients also reported their experiences with health

professionals which was less favourable due to the lackof awareness among clinicians. Patients can wait between6 and 30 years before being diagnosed with BAD. Manypatients were subjected to many tests before having a

Table 1 Types of diet consumed by responders

Low fat Gluten-free Low carb Lactose-free Wheat-free Multiple exclusion

43.8% 14.3% 6.7% 11.4% 14.3% 34.3%

Figure 5 Number of respondents reporting weight loss and

weight gain.

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SeHCAT scan. Many patients received a diagnosis of IBSand due to the limitations of the questionnaire, it wasunclear if health professionals validated their symptomsusing the Rome criteria.10

This survey is limited because questionnaire respon-dents may read the questions differently and enteranswers based on their own differing interpretations.Furthermore, the respondents were a select group ofmotivated patients who had signed up online for theBile Salt Malabsorption group and/or were members ofBAM Support UK. Whether the demographics and theclinical condition of these participants is typical of thebroader group of people diagnosed with BAD is uncer-tain, but it does in many ways seem to be similar tothose recently reported in a nationwide survey ofSeHCAT use.8

Despite these limitations, the information gained willhelp increase awareness of this condition to the publicand health professionals about BAD. This is the firstsuch report in BAD; patient feelings of delay in diagno-sis, poor quality of life, lack of understanding and diffi-culty at work seem to be at least as severe as those foundin other chronic bowel conditions such as inflammatorybowel disease or coeliac disease.We conclude that BAD needs more recognition by clin-

icians to reduce the time for diagnosis from around5 years. More research is needed to estimate the personaland health economic impact of the condition. Bile acidsequestrant drugs improve physical and mental symptomsin the majority of patients, but research is needed toidentify other therapeutic approaches and if possible findways to prevent the development of this disorder.

Competing interests None declared.

Provenance and peer review Not commissioned; externally peer reviewed.

Data sharing statement No additional data are available.

Open Access This is an Open Access article distributed in accordance withthe Creative Commons Attribution Non Commercial (CC BY-NC 4.0) license,which permits others to distribute, remix, adapt, build upon this work non-commercially, and license their derivative works on different terms, providedthe original work is properly cited and the use is non-commercial. See: http://creativecommons.org/licenses/by-nc/4.0/

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