I have enjoyed the information sharing and support. There seems to be a wide variety of health issues but D is the most discouraging thing people seem to be dealing with and pain.
It's good to find somewhere with all the information I needed in one place. It helped me enormously when I was struggling to get the help I needed from my doctor.
There is a wealth of information on your site and I found it particularly helpful to read the stories from people who I know went through the same thing as me.
I've found the site very informative and it helped me to better understand my condition just after I'd been diagnosed.
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These are the results of the 1st joint BSM Facebook Group and BAM Support UK Questionairre. This report will be updated every three months or as further results dictate. The report can be downloaded from the Downloads page.
This document details the results and analysis of the BSM/BAM Questionnaire that was jointly produced by the BSM Facebook Group and BAM Support UK.
The purpose of the survey was to provide sufferers of Bile Salt / Acid Malabsorption with information and statistics on how this condition affects the responders and to help them in their dealings with medical practitioners regardless of where they live. We hope this document has achieved that aim.
The survey will remain open for new respondents and an updated report will be published via the BSM Facebook Group every three months. It will also be made available to BAM Support UK and can be downloaded from the main BSM Website: www.bile.org.uk
The survey can be accessed by emailing a request to firstname.lastname@example.org
Any questions or requests for a full summary of the survey data should be made to email@example.com
Disclaimer: This report contains the views and personal experiences of patients with BSM/BAM. Any medical information contained within should not be treated as medical advice or opinion. If you are concerned you are unwell or may have BSM/BAM, please consult with your GP.
Age Range of Respondents at Time of Survey
Age Range of Respondents When Diagnosed with BSM/BAM
Location of Respondents
Diagnosis & Symptoms
Type of BSM/BAM
Severity of BSM/BAM from SeHCAT Scan
BSM or BAM
Length of Time of Symptoms Before Diagnosis
Comparison of Bowel Symptoms Before Diagnosis and Following Commencement of Treatment
Comparison of Symptoms Before Diagnosis and Following Commencement of Treatment
Comparison of Other Physical Symptoms Before Diagnosis and Following Commencement of Treatment
Comparison of Vitamin Levels Before Diagnosis and Following Commencement of Treatment
Bile Binding Medication by Type
Emotional and Psychological Impact
Comparison of Respondents Mental Health Before Diagnosis and Following Commencement of Treatment
Impact of BSM/BAM on Ability to Work
Support from Others for Sufferers of BSM/BAM
Most Commonly Avoided Foods by BSM/BAM Patients
Weight Gain Vs Weight Loss for BSM/BAM Sufferers
Amount of Weight Gain/Loss by BSM/BAM Patients
Medical Professionals Currently Being Consulted by Patients with BSM/BAM
Satisfaction with Medical Care Before Diagnosis
Satisfaction with Medical Care After Diagnosis
Patients with BSM/BAM Diagnosed with IBS
Number of Interactions with Medical Professionals Before Diagnosis
The highest number of respondents in any individual age group were aged 56 and over at the time of diagnosis representing 20% of the total. However just over half, 51.9%, of the cohort were aged between 36 and 55 at the time of diagnosis. Of the total, 69% have been diagnosed by a gastroenterologist.
A total of 89.4% of those who responded to the survey have been officially diagnosed with BSM/BAM leaving 10.6% undiagnosed. The rest of this analysis will focus on the responses of those who have received a diagnosis as the sample group of those undiagnosed is too small to have any statistical significance.
Significantly more women responded to the survey than men.
The majority of respondents report their home location to be within the United Kingdom. The next biggest group report their location as within north America.
The majority of respondents have been diagnosed through the use of a SeHCAT scan with 58% being diagnosed this way. Other respondents who have been officially diagnosed with the condition have done so through either a successful trial of bile binding medication or by symptoms alone. Most members of the support group who have responded through the survey have received a diagnosis leaving a small number undiagnosed and only 5% still waiting for a diagnosis.
The three types of BSM/BAM are:
Type 1: BSM/BAM secondary to ileal resection or ileal inflammation
- Crohn’s disease, ileal resection
Type 2: Idiopathic BSM/BAM
Type 3: BSM/BAM Secondary to various gastrointestinal diseases
- Cholecystectomy, SIBO, post radiation therapy, coeliac disease, chronic pancreatitis
Both Type 2 and Type 3 of this condition are more frequent in this group of respondents at 38% and 37% respectively.
78% of respondents had undergone more than one test before being given a diagnosis of BSM/BAM with 59% undergoing more than two tests. Most respondents report undergoing invasive testing including Colonoscopy, Sigmoidoscopy, Endoscopy and blood tests.
Of those who underwent SeHCAT scans, the majority (29%) suffer from the severe form of BSM/BAM, reporting a retention score of 5% or less. Nearly a quarter do not know, or were not given, the results of their SeHCAT scan.
Although this condition is known as both Bile Acid Malabsorption and Bile Salt Malabsorption, neither term is more common than the other.
Just over half of respondents have experienced symptoms for five years or less and 44% have experienced symptoms for more than six years before diagnosis, with some of these experiencing symptoms anywhere between ten to thirty years.
Around 60% of patients experienced a reduction in diarrhoea following diagnosis with BSM/BAM and just over 40% occasionally experience constipation since being diagnosed, although due to the limitations of the survey it is unclear if this may be caused by the types of medication patients are using.
While 52% 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 they only experience this symptom occasionally.
35% of respondents report that nausea is a symptom they still experience after diagnosis with BSM/BAM, which is higher than that reported before diagnosis. This may be explained as a side effect of bile binding medication rather than a symptom of the condition.
Nearly 40% of respondents report that they always experienced extreme tiredness before diagnosis with BSM/BAM whereas one quarter report this as only occasionally following diagnosis.
Headaches, dizziness and feeling as though you may collapse all are symptoms that have improved after diagnosis.
Most respondents report that their vitamin levels are never low before or after diagnosis with BSM/BAM. This is unusual as the condition and bile binding medication can have a significant impact on the ability of the body to absorb fat-
Of those respondents who have been diagnosed with BSM/BAM, 94% have been prescribed medication to control their symptoms. Of these, 22% have had to pay for a private prescription and thirteen people in the UK have had to pay privately for a prescription for bile binding medication.
In this group of respondents, the majority have been prescribed a bile binding medication to control BSM/BAM. Just under a quarter report that they are taking multiple different types of bile binding medication. The majority report using Cholestyramine as treatment for BSM/BAM however 50% report that they are using the more expensive tablet version of bile binder Colesevelam.
61% of respondents had received a prescription from a Gastroenterologist and nearly one quarter received prescriptions from a combination of Consultants, GP’s and other health care practitioners.
Exactly half of the cohort have been prescribed Loperamide by health professionals and 46% have received prescriptions for medicines other than bile binders and Loperamide. The most common of these are combinations of drugs including, Amitriptyline, vitamin supplements, Codeine based painkillers of differing strengths and proton pump inhibitors e.g. Omeprazole.
36.5% of respondents are also using over the counter drugs to complement the prescriptions from health professionals. These include, vitamin supplements, psyllium husk and indigestion medications.
Most respondents to the survey report that their mental health has been positively impacted by the use of bile binding medication. In almost all areas there is an improvement but most significant improvement can be seen in areas of embarrassment, low self-
Almost all respondents have had a positive impact on their employment since beginning treatment for BSM/BAM.
The survey of BSM/BAM sufferers shows that most people feel well supported by their immediate family, however 44% of respondents feel the support they receive at work is not adequate. Although treatment for BSM/BAM seems to improve a patient’s ability to work, it seems that there is still not enough support in the workplace.
Of those people who feel unsupported by their friends, family and work colleagues, 37% feel as though they are unable to discuss their medical issues with the people closest to them, 42% feel as though others won’t believe them if they share details about their condition and just over a quarter feel as though they are a burden to others. Other reasons given for not feeling supported include others being ‘rude or insensitive’, others not understanding the severity of the condition and being told ‘it’s just IBS’.
Just under half (49.5%) of respondents follow a specific diet to try and control the symptoms of BSM/BAM. The following table shows the most popular exclusion diets selected by respondents:
Just over one third of the support group that responded to the survey are following multiple exclusion diets to control the symptoms of BSM/BAM. Other diets not listed above include: Sugar free, FODMAP and low fibre/low residue diets.
78% of respondents specifically avoid certain foods in their diet.
The most commonly avoided food is dairy which includes milk, eggs and cheese. High fat foods are the second most frequent trigger food reported by respondents in this group. Vegetables and onion/garlic are also a large trigger group of foods for BSM/BAM sufferers.
Despite following a low fat diet, BSM/BAM sufferers report that they are more likely to gain weight with this condition:
Despite following low fat or other exclusion diets, respondents with BSM/BAM are more likely to gain 5-
Three quarters of respondents report that they are currently under the care of a medical professional leaving 25.7% of respondents not currently receiving medical support.
30% report being under the care of more than one health professional and just over half are under the care of their GP.
92% of respondents report that they consulted a medical professional before diagnosis with BSM/BAM. Of these, 19% saw their GP and 43% saw both their GP and a Gastroenterologist. Almost three quarters saw multiple medical professionals before diagnosis with the condition including GP’s Gastroenterologists, Dieticians or Surgeons.
Of those respondents that were unsatisfied with the medical care they received 35% felt like they were not taken seriously by the medical professionals they saw. Just over half of the cohort felt as though their symptoms were dismissed and 28% encountered GP’s that were unaware of the condition BSM/BAM. 39% were told by medical professionals that nothing could be done about the symptoms they were experiencing.
Eighteen respondents report that their GP refuses to prescribe the tablet form of bile binding medication after they have been diagnosed. However, the most frequent reason given for patients feeling very disappointed with the medical care they have received after diagnosis is that the medical staff they have seen seem to have no understanding of the condition they have been diagnosed with. Thirty-
Most patients report twenty or more interactions with medical professionals before receiving a diagnosis of BSM/BAM.
More positively, 31% report between one and ten interactions with medical staff before receiving a diagnosis.
End of report.