Life with Bile Acid Diarroea
Symptoms of Bile Acid Diarrhoea vary significantly from person to person. The following sections give an insight on the commonly discussed symptoms at our patient group and on the social media forums.
Understanding the Diagnosis
For many of us when we were in the consultant room it was both a relief and a shock to find that finally there was an answer to our symptoms. We experienced a mixture of emotions ranging from feeling on a high to tears and anger at why it was not picked up years ago. However, many of us found that we left our consultations still not really understanding what the condition was and how best to manage it. This was either because there was so much to take in we did not hear everything and/or we were not given enough information at the time. In addition some of us were not given any supporting patient information to digest at a later point or any follow up appointment / contact.
If you feel you are still unsure about what type of BAD you have (Primary or Secondary) and the severity (mild, moderate or severe) then take a look at the what is bad section or ask your GP. If your GP does not know then show them BAD UK’s GP Information leaflets which can be downloaded or printed from here, or ask your GP to contact your consultant for further information. It is important to be aware that if you have not had a SeHCAT scan then the severity classification of your symptoms will not be known.
To our knowledge the BAD UK: Coventry group (formerly UHCW Patient Panel group ) is the only support group we are aware of in the UK specifically for BAD patients. Our members have found this group to be a fantastic support as it provides sufferers with the opportunity to find out more about the condition from the clinical specialist team and meet with others who know exactly how you have been suffering and how it makes you feel. Talking to other people at the meetings and listening to others stories can really help to come to terms with life with BAD and realise you're not alone.
Because we have found this to have been so invaluable to us we decided to set up our BAD UK Charity to help others who suffer from BAD and we receive advisory clinical support from the UHCW Clinical Specialist team in our charity work.
We will also be expanding our Patient Meetings and Social Groups to enable others across the UK to get together with others who have BAD. To follow our progress and to see when groups are meeting near to you please take a look at our Patient Meetings Section. If you would like to start a support group in your area then BAD UK are happy to help guide and support you in setting one up. Please contact using our online Coordinator Information Request Form.
We are aware of some other BAD specific websites and Facebook pages where you can speak with others who have our condition and there are links to lots of key information about the condition. Links to these groups and websites can be found on our Links Page.
Unlike sufferers with other bowel conditions (such as Crohn's and Ulcerative Colitis) who have an inflammatory bowel disease specialist nurse, we are unaware of any hospitals having a specialist nurse support service for BAD. If you are aware of a hospital offering this support then please do let BAD UK know by emailing us using our Contact Form.
Adjusting to the medication
Everyone responds differently to the bile binding medication due to the type and severity of BAD you have and whether you have any other medical conditions particularly ones that affect the bowel such as Crohn's and ulcerative colitis. In addition many of us have found that dietary intake can play a significant part in adjusting to the medications and have found that changes to our diet along with finding the right doses of bile binder has had a positive impact on our symptoms and how we feel.
Some people find that their symptoms quickly improve following commencing bile binding treatment whilst others find that it can take up to 3 months before they identify the right dose and regime that suits them. If you are finding that it is taking time to adjust to the prescribed bile binding medications and are not seeing an improvement in your symptoms it is important that you discuss with your GP and/or Consultant's team to review your progress. It may be that you require an increase /decrease in the dose prescribed, a different type of bile binder, additional medications to help manage your symptoms or further adjustments to your diet.
For some people the timing of when they are taking the bile binders needs adjusting, some find that one dose a day works whereas other have a better response to splitting the dose to two or three times a day or taking the whole dose at night prior to going to bed. Whilst you are adjusting to your medication it is worthwhile keeping a log of your bowel motions to enable you and your GP/Consultant to analyse your stool frequency, types and identify whether there is any time of the day when your symptoms are worse. Monitoring sheets, as well as a clinically approved reference guide, can be downloaded and printed from here.
Primary Medications used in the treatment of Bile Acid Diarrhoea
The three main medications used to treat the symptoms of BAD are Colesevelam (Cholestagel),Colestyramine (Questran & Questran Light) and Loperamide (Imodium).
Ensuring that you do not miss taking your bind binders is really important as symptoms return very quickly. For some of us the impact is fairly quick within hours / same day. For others the impact can be the subsequent day. Most of us find that if doses are missed it takes a few days / weeks for the symptoms to resolve. Keeping a supply of the bile binders in your handbag and wallet is a good idea so if you forget to take them before you leave the house you have some with you. Some of us keep a larger supply in our cars (which we rotate to ensure they do not go past the expiry date) so if we go away with work or for the weekend and forget to take our medication we have an emergency supply. Ask your GP to prescribe a couple of weeks extra supply so you can have an emergency back up in places that work for you.
We have also found that we need to drink plenty of fluids and that the bile binders are more effective when we are well hydrated.
HEALTHCARE PROFESSIONAL RELATIONSHIPS
In some instances many of us have found prior to diagnosis that the interactions we have had with health care professionals have not always been as good as they could have been. Whilst this has had a significant impact on our self esteem and confidence in our GP's and other healthcare professionals, we have come to realise that this is not a particular fault of the healthcare professional we have seen but due to there being a widespread lack of awareness across all healthcare professionals.
Our clinical colleagues at UHCW have advised that there is a growing awareness of our condition across the health systems albeit a slow growth. In addition there is ongoing research being undertaken into BAD, the Guidelines for the Chronic Management of Diarrhoea are being reviewed by the British Gastroenterology Society with patient representation from BAD UK and the National Institute of Clinical Excellence are in the process of reviewing the benefits of SeHCAT in providing a diagnosis of BAD. Recently Professor Julian Walters a leading UK Gastroenterologist with a special interest in BAD has co written a book called What's Up with Your Gut which raises awareness of bile acid diarrhoea.
Following diagnosis some of us have had really good support from our GP's whereas others have continued to struggle when visiting GP's as they do not seem to understand how to manage the condition or the impact it has had and continues to have on our lives. For those of you who have had a bad experience, although it can be hard to do, it is really important to put these bad experiences behind you. We have found that taking information with us from the BAD UK web pages has helped us to discuss our condition with our GP. It has also helped seeing the same GP each time we visit. If you continue to feel it is a struggle you can suggest that your GP contacts your consultant for further support and information or you could consider seeing a different GP in your practice.
DIET AND EATING OUT
Information on diet and BAD is limited. However, it is recommended that a low fat diet (less than 40g a day and not all at once) is followed. The majority of us have found that a low fat diet is a necessity but many of us also have other trigger foods that we find affect our BAD symptoms causing increased diarrhoea, constipation and bloating. Many of us have also found that eating smaller meals more frequently has helped finding the right balance.
Common trigger foods are gluten, wheat, dairy, high fibre, spices, garlic and processed foods. What we have found is that we are all different and with the exception of low fat we have found that what works for one of us, e.g. no dairy, does not necessarily work for everyone else. It is important that you try to have a balanced diet of protein, fruit and vegetables, carbohydrate and calcium. A dietician can support you with this and help you to identify your trigger foods. You can ask your GP or Consultant to refer you to a dietician.
Eating a low fat diet is challenging and you have to be careful of the hidden fats in substances, particularly ready prepared foods. Many manufactures provide a traffic light system on the front of the packaging. However, you do need to check whether the fat content is for the whole product or a proportion of the product.
For example the product per 100g contains 7.5g of fat but the product is one whole serving weighing 300g and actually contains 22.5g of fat if you ate the whole thing.
Many of us have found that cooking from scratch, although more time consuming, makes it much easier to achieve less than 40g of fat a day. There are now many reduced or low fat versions of butter, cheese, crème fraiche, yoghurts, cottage cheese and quark which can be utilised. Switching to lower fat meats such as white meat parts of chicken and turkey, venison, ostrich, kangaroo and rabbit can also help. If you are missing your lamb, pork and beef then have these in moderation and choose the learner cuts (ask your butcher if you are unsure).
Non oily fishes are also a good alternative to meats. When buying salmon, look out for wild salmon which has a much lower fat content than farmed salmon. It is now widely available in supermarket freezer sections and is beginning to be seen on fresh fish counters. A note of caution if you buy low fat processed meals and sweet treats, these can be high in sugar and also a number of them contain laxative ingredients such as sorbitol which can actually increase your diarrhoeal symptoms.
Eating out can prove very difficult with BAD. There are many hidden fats in food substances and in the oil used to cook them. What may appear to be a low fat option on the menu could actually have lots of olive or vegetable oil in it which increases the fat content. For example one table spoon of olive oil used in cooking contains 14.7 grams of fat!! In the home you can switch to oil sprays which greatly reduce the content but in a restaurant these are unlikely to be used and you will need to educate your friends and family on the hidden fats such as cooking with oil.
Specialist dietary blogger, Abi Purrington will be supporting BAD UK in providing advice and tips on diet adaptations, particularly low fat alternatives along with recipe ideas for the sensitive bowel. Please note that we cannot recommend any specific dietary change, the information provided by Abi is a there as a guide to what dietary changes may help and we advise you should always discuss any significant diet adaptations with your GP and /or dietician.
For further information and to access Abi’s recipes and advice please refer to our comprehensive Dietary Advice section.
REGULAR BLOOD CHECKS
Many of us have found that when tested we have had low B12 levels and our fat-soluble vitamin levels (A, D, E and K) can also be low. Again each of us is different and individual levels vary from person to person. It is important to have a baseline check of your vitamins to ensure that it is not these that are causing your symptoms of tiredness, joint pain etc. Our Ongoing Monitoring page provides information on this along with the recommendation to have your cholesterol and lipid levels checked regularly as the side effect from the bile binders can be an increase in lipid levels.
Many of us have found that we have what we call "flare ups" of our BAD. There appears to be no reasons for these, we may well have been sticking religiously to our medication regime and diet adaptions and feeling fine. Then, inexplicably, we can have the diarrhoeal symptoms back for a period of time with debilitating impact on our lives. It's really hard not to get despondent and feel very fed up during these "flare up" periods particularly when you have had a really good spell. Resting, keeping well hydrated and staying positive is really important when a flare up occurs.
WORKING WITH BAD
Working with BAD is another significant challenge for sufferers to manage. Prior to diagnosis many of us have had a tough experience managing our BAD symptoms in the work place. These range from feeling embarrassed and humiliated, being off sick a significant amount of time or having to stop working, change job or hours to accommodate our symptoms. Sadly a small minority have been socially excluded in the work place because of their symptoms and/or victimised and bullied by colleagues or their employers. Since diagnosis many of us have found a significant improvement in our ability to work although some do find that they do require some adaptions to their working hours and practices.
When you go back into work after a diagnosis and you are starting to feel better it can still be very daunting for some. Now the brain fog has lifted, you are feeling less tired and you are beginning to feel more emotions once again; you may find that you feel even more embarrassed by the symptoms you had, more aware of how bad you felt when you were at work prior to your diagnosis, worried about how much you let your colleagues or employers down by not working at the top of your game or angry about how someone has been with you previously when you were unwell. It is normal to have all these feelings and emotions along with still feeling anxious and worried that the medication may not work or a "flare up" could occur. Having lived with such debilitating and humiliating symptoms it will take time to gain your confidence in the medication and build your self-esteem back up.
Helping your employer (and if appropriate your colleagues) understand your condition is really important for both you and them. Some of us found we could talk openly about our condition whereas others found it hard to talk about it so gave employers written information they had devised themselves or information from the websites. Sharing information about BAD has had a positive impact for many of us. However, we are aware that a minority of people have not had such a positive response. If you find you are having problems with your employer then it is important to be aware that BAD is now recognised as a disability under the Equality Act and employers have a duty to consider reasonable adjustment in the workplace. For further information and and overview check out the Disability Rights section of the UK Government’s website.
LEAVING THE HOUSE
For many of us our symptoms were so bad by the time we were diagnosed we found that our confidence to go out and about was very low for fear of having an accident. Many of us found that we had limited the places to go based on how far away and how good the toilet facilities were. Many of us had stopped going to concerts, theatres, sporting events, going on holidays or travelling by train or aeroplanes.
Once you are finding your medications are starting to work it is really important to start thinking about going further afield then the places you have been limited to. This can be challenging but start small and do it with someone so you are not alone. It doesn't happen overnight but the confidence does return and, like many of us, you will find you can go to that theatre show or concert, get on a plane or go on long distance trips in the car again. Getting a toilet card and a radar key which enables you to utilise the disabled toilets and have priority use of other toilets is really beneficial. Radar toilet keys and BAD UK toilet cards can be bought from our online Shop. When you arrive at a concert or sporting event identify where the disabled toilets are and have a word with the event staff marshalling the toilet areas before hand so that you don't have to explain yourself if you do need to make that urgent trip. Many of us still keep that emergency supply of Imodium on us and until our confidence levels improve we still take out our emergency kits (toilet roll, pads, bags and change of underclothes) in case we need it!
The symptoms of BAD and the effect it has on our self-esteem and confidence can have a significant impact on existing relationships with your spouses, partners, families and friends as well as when developing new relationships.
Spouses, partners, friends and family members who have come along to our group often discuss the impact that living with someone whom has BAD has had on them as well. Sometimes we can get so lost in how it is making us feel we stop seeing for a while the impact it has had, or is having, on them. Those around us can variously be affected by mad car dashes to get you to a toilet, limited or non-existent social outings or going out for meals, the person they love being low in confidence and withdrawn and worry about the lack of an explanation for the symptoms or a means of improving them. Spouses, partners and family members have said that it is important for them to fully understand what BAD is, how it affects you and, most importantly, what it is they can do to support you.
For those sufferers who are single it may be very daunting for you to consider having a new relationship. Maybe previous relationships have broken down due to your BAD condition and/or you have no idea how a potential new partner will react when they are faced with the full reality of how your condition impacts on your life and what it's truly like when you have a "flare up". Remember that many BAD sufferers are fortunate enough to be in existing relationships and so there are wonderful people out there who will understand your condition and love you. BAD can have a significant negative impact on our confidence, self-esteem and perception of our body image. However, what you think and see is not what others see and think. So give that new person a chance, tell them early and let them decide. If it's not something they can cope with then they are not the person for you.
Over the years many of us have found that we have lost contact with lots of friends. This has been due to having to pull out of social events last minute, leaving early, no longer going away or staying with friends as symptoms are too embarrassing. Or friends just generally getting fed up of asking you over or out and because you rarely go the invites have slowly dwindled and ceased. Following diagnosis and you start to feel better the enormity of how different your social network is now compared to before your condition surfaced can be upsetting and depressing. Some of the people who you are no longer in regular contact with you may find no longer matter to you whereas other lost friendships do. It can take a bit of courage as you may be worried about getting a knockback but when you are having a good day its worth considering picking up the phone, sending a text or message on social media or writing a note. We would suggest that whichever medium you choose briefly explain what it's been like for you, how things are for you now and how much you have missed them. It's worked for many of us and we have discovered that often those lost friends have had no idea what to do, are feeling the same as you and very quickly are no longer lost friends!
Many of us continue to have abdominal distension intermittently or frequently and many of us are unable to lose weight despite following rigid low fat diets. In addition many find that they continue to struggle to exercise. This all has an impact on how we feel about our body image and many of us have found that we hate clothes (when we go shopping we cannot find anything that fits or is flattering to wear) thus some of us end up wearing baggy tops in dark drab colours and hate the way we look when we look in the mirror.
If this is you then when you are starting to feel better it is worth considering what is in your wardrobe once again because what you wear can have a significant impact both negatively and positively on how you feel. Take a friend or a family member shopping with you, talk to them and the shop assistants about what will suit your shape and suit your colouring. You don't have to go to an expensive department store or designer shop. It's amazing how something you think would not suit you hides your distended abdomen, looks flattering and the colour brightens your face. If you do have a bit of spare money then there are companies out there which provide colour pallets and styling services. Consider having your hair restyled, often people have found the worry and stress of sitting in a hairdresser's chair prior to diagnosis too much and put off going to the hairdressers. Having your hair restyled and coloured can really help lift how you feel about your body image.
Getting back into exercise is another area that can be difficult. As we start to feel better we then think we can build up to a similar level of exercise to that which we did before our illness. Unfortunately for the majority of us we have found this is not achievable and our stamina remains low. Set yourself small goals each week and build up to what feels comfortable. For example, you may find that you can no longer jog as you used to so begin with walking.
You can always ask your GP for information on healthy life style programs or see what programs your local sports centre is running to support people to increase your exercise levels.
Many of us at times continue to have problems with sore skin around the perianal area (anus and vaginal areas) and sometimes groins. This can occur during a “flare up”, episodes of incontinence (accident) or soiling of the skin when bowels are opened.
Skin has a very fine slightly acidic film on the surface called acid mantle. This film acts as a barrier to bacteria, viruses and other potential contaminants that might penetrate the skin. Urine and faeces are alkaline which can disturb PH balance. Faeces, also contains digestive enzymes which can causes erosion of the skin. Thus, when the skin is exposed to urine and faeces the PH balance around perineum changes which decreases the skins natural barrier function and the skin can become inflamed or break down.
For people with BAD when bowel motions are loose, there will be a larger amount of digestive enzymes (bile salts) being passed so it is likely that at times you skin may become sore. Therefore, it is really important to protect your skin by keeping it clean and dry. However, it is also very important that skin cleansing is undertaken correctly because if undertaken incorrectly it can cause further aggravation.
The following are 3 basic principles that will help care for your skin
- Skin should be cleansed after every episode of incontinence or if soiling of the skin has occurred whilst opening your bowel
- Where possible use a non scented skin cleansing product formulated to maintain the natural PH balance of skin. Traditional soaps and shower products are alkaline based and can further increase the levels of alkaline when they come into contact with faeces and urine. They can also dehydrate the skin and contain surfactants which can all irritate the skin causing it to be more vulnerable to inflammation, breakdown and growth of bacteria
- Increasingly there are many products now available which may be very confusing to choose. If you do find it confusing your pharmacist or practice nurse will be able to help advise you on which products would be suitable. Where possible when heavy soiling has occurred it is best to shower, bathe or use a bidet
- If this is not convenient or only a small amount of soiling has occurred use a soft wet cloth rather than flannels and sponges. Flannels and sponges are rough which can cause increased friction and are difficult to keep clean which increases the risk of bacteria. Warm water rather than hot water should be used
- Cleansing should always be performed from front to back to avoid contamination of your urine tract
- When out and about moistened toilet paper / cotton wool or a toilet wipe. When using a wipe it is important to use one than does not contain alcohol as this can dry your skin and one that is formulated to maintain the natural PH balance of skin
- It is very important to ensure your skin is kept dry as moisture can cause the skin to become fragile and increase the risk of inflammation and breaking down
- When drying the skin avoid rubbing as this can cause friction.
- Gently pat the area dry with a soft towel / toilet paper or leave the area to air dry.
If you are routinely undertaking the above cleansing and drying steps but still experiencing sore or itching skin in your perianal area it is important that you do not ignore these symptoms. If you are experiencing heavy soiling, frequent incontinence, persistent itching and / or patches of broken skin then we would advise that you discuss with your GP or practice nurse your symptoms. It is important not to be embarrassed about talking about symptoms "down there", your GP and Practice Nurse will want to support you with managing your skin and they will also consider whether there is any other reason for you symptoms such as thrush or other bacterial infections.
However, if the frequency of soiling / incontinence is low and itching is minimal or none existent then you may find it beneficial to use an over the counter skin protection product which are available as a cream, spray, foam or wipe. There are two types of protection products: conditioning barrier products which lock in moisture to hydrate and protect the skin and barrier products which provide a protective coating to minimise the skins contact with urine, faeces and sweat. Our pharmacist can help you decide which would be best for you.
If you feel unsure about how bad the condition of your skin is then take a look using a hand held mirror.
If you do use a conditioning or barrier product it is important that you:
- Follow the instructions on the product
- If you have sensitive skin then be cautious with products that contain dimetnicone, lanolin or zinc oxide as these additives may cause irritation to sensitive skin
- The product should be applied thinly to the skin. Large amounts stop the skin from breathing and can make the area sweaty and uncomfortable
- Ensure that the product is allowed to dry completely before replacing clothing or a pad as it can stick. This can take 30 -60 seconds depending on the type of product you use
- Applying too many layers of barrier products may make the are feel stiff and cracking can occur which will allow moisture to penetrate through the barrier onto your skin
- Cream based protection products should be cleansed off after each episode of incontinence to avoid a build up of cream and faeces
Other things to generally consider in helping to keep your skin healthy is to not wear too tight clothing, wear cotton underwear and consider wearing stockings or hold ups rather than tights.