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Gastrointestinal disturbances

This Infosheet explains what gastrointestinal disturbances are, what causes , , and diarrhoea in myeloma patients, how they are treated and some tips for self-management.

What are gastrointestinal a few days) or chronic (persisting for disturbances? longer periods of time, usually more Gastrointestinal (GI) disturbances than two weeks). are issues involving your Severe or long-term vomiting, and intestines. This can include constipation or diarrhoea can lead nausea, vomiting, constipation and to more serious conditions, so any diarrhoea. These are very common vomiting or change in your normal side effects in myeloma patients, bowel habits should be reported and can upset normal day-to-day life to your doctor or nurse. If you feel and be distressing to live with. awkward or embarrassed discussing GI disturbances can be acute your bowel habits, try to remember (lasting for a short time only, such as that your doctor and nurse will be

Myeloma Symptoms and Infosheet complications Series Infoline: 0800 980 3332 1 used to talking about it and that If you find (either bright red they are there to help prevent and or dark and like coffee grounds) in manage any side effects of myeloma your vomit you should seek medical and its treatment. advice immediately.

What are the causes of nausea and Nausea and vomiting in myeloma patients? vomiting Nausea and vomiting are very common in myeloma patients. They What are nausea and vomiting? can be due to a number of reasons.

Nausea is a feeling of queasiness, Myeloma treatment and unease and discomfort in the upper supportive treatment stomach, with an urge to throw up or be sick (vomit). Treatment for myeloma is the most common cause of nausea You may not necessarily vomit if you and vomiting in myeloma patients. have nausea. They are common side effects of drugs, such as What are the symptoms of nausea cyclophosphamide and melphalan, and vomiting? and other anti-myeloma drugs, such The symptoms of nausea and as bortezomib. vomiting include: Some supportive treatments can „„Feeling like you need to vomit or also cause nausea and vomiting. actually vomiting For example, some people can feel „„Queasiness sick during or after radiotherapy. Antibiotics and some painkillers can „„ cause nausea and vomiting too. „„Excessive sweating and If you have previously been affected clamminess by nausea and vomiting during „„Dry mouth treatment, you may anticipate Severe or persistent vomiting can that you will experience the same lead to: symptoms again. This can induce a type of nausea called anticipatory „„ nausea. „„Stomach pain „„Damage to the throat

2 www.myeloma.org.uk Infection Treatment for other illnesses or Certain bacterial and viral infections conditions may also cause nausea cause nausea and vomiting. These and vomiting. You can check infections are often contagious, so whether any other treatment you if you have been around others who are having can cause nausea and have had stomach bugs it is not vomiting by consulting the patient uncommon to pick up an infection information leaflet (PIL) included too, especially because myeloma in the drug pack. You should make patients have a higher risk of your doctor or nurse aware of any developing infections. other treatments you are taking for other illnesses or conditions. Other symptoms of an infection include diarrhoea, abdominal How are nausea and vomiting and pain, a high temperature treated? and loss of appetite. Anti-emetics For more information see the Infection and Nausea and vomiting are usually myeloma Infosheet from Myeloma UK treated with anti-emetics, for example , Stress, and nervousness granisetron and . They Strong emotions, in particular stress, will be prescribed along with your anxiety and nervousness, can make myeloma treatment to prevent or you feel sick or vomit. minimise these side effects. You should take your anti-emetic For more information see the Infopack for regularly as prescribed. living well with myeloma from Myeloma UK Do not wait until you feel sick, as the drugs won’t be as effective this way. Pain If you find the anti-emetics you have Severe pain can cause nausea and/ been prescribed are not effective or vomiting. when taking them as prescribed, ask to try a different one as there are Other illnesses and conditions several types available. Other illnesses and conditions can Other treatments be responsible for causing nausea and vomiting, for example, diabetes If your nausea and/or vomiting or travel sickness. are not directly caused by your myeloma treatment, you may be

Infoline: 0800 980 3332 3 given treatments other than anti- sick, try putting light perfume emetics to help. This could include onto a handkerchief that you can painkillers, antibiotics or relaxation use to help mask the smell aids like complementary therapies. „„Certain scents may help, for example lavender. Speak to a Tips for self-management complementary therapist who „„It is important to keep drinking should be able to recommend as vomiting can dehydrate you. some aromatherapy scents to Allow your stomach to rest after help with your nausea vomiting then sip drinks such as „„Try to take your mind off how still or sparkling water or fizzy you feel – talk to people, watch a drinks film or listen to soothing music to „„Ginger may help settle your distract yourself stomach. Try ginger tea, non- „„Relaxing breathing exercises or alcoholic ginger beer/ale or ginger lying down in a darkened room biscuits may help to reduce feelings of „„Mint can also help with nausea. nausea Try mint tea, mints or chewing „„Fresh air may help – try sitting gum outside or near an open window „ „Eat little and often. Snacking on „„Calm your anxiety or stress with plain, cold or room-temperature relaxation techniques may be more palatable than hot meals. If you can’t face eating „„If vomiting is severe, fluid can be solid food, high calorie drinks may replaced by special preparations be more tolerable available through your GP or from a chemist „„Avoid spicy, fatty or acidic „„Avoid your favourite foods to prevent you associating them with nausea and vomiting „„Avoid strong smells if they exacerbate your nausea, for example avoid cooking or keep the window open during food preparation „„If hospital smells make you feel

4 www.myeloma.org.uk „„A feeling that you have not Constipation completely emptied your bowels What is constipation? If constipation is not treated it can cause more severe symptoms, Constipation is defined as having including: difficulty emptying your bowels. When you are constipated, bowel „„Swollen, painful stomach, often movements occur less often than accompanied by stomach cramps they would normally and they may „„Loss of appetite be dry, hard and painful. „„Nausea It is important to know what your „„Vomiting normal bowel pattern is because constipation is relative to your usual „„Excessively runny diarrhoea – this habits and this varies between may occur if you bowel is blocked patients. Some people have two with hard faeces or three bowel movements a day „„ and thirst whereas for others three or four movements per week might be What are the causes of more normal. constipation in myeloma patients? It is worth remembering that in the There are several reason why majority of people, the digestive you may have constipation as a system slows down with age, so as myeloma patient. It is important you get older, you may need to move to know what has caused your your bowels less often. constipation, as this will help both you and your doctor or nurse treat it What are the symptoms of effectively. constipation? Myeloma treatment and The symptoms of constipation supportive treatment include: Some treatments for myeloma can „„Fewer than three bowel cause constipation as they slow movements a week the moving of faeces through the „„Pain or discomfort when opening bowel. This causes more water to be your bowels removed from the faeces, resulting „„Passing small hard stools in dry, hard stools. „„Feeling bloated and tired Treatments and supportive

Infoline: 0800 980 3332 5 treatments that may cause Dehydration constipation include: Your body needs a lot of fluid to help „„Thalidomide, lenalidomide move food through your intestines (Revlimid®) and bortezomib and also to keep your faeces soft. (Velcade®) If you are not drinking enough fluid „„Anti-sickness drugs (e.g. and you become dehydrated, your granisetron, ondansetron) faeces will become hard and you may have difficulty opening your „„Some chemotherapy drugs (e.g. bowels. vincristine) „„Most strong painkillers (e.g. Lack of exercise/poor mobility , , oramorph®) If you are unable to exercise or it is hard for you to get around then you may lose muscle tone in your Myeloma bone disease can increase stomach area and in your intestine. the amount of calcium in your blood As these muscles are needed which can cause hypercalcaemia. to help move food through the Symptoms of hypercalcaemia digestive tract, the decrease in include constipation and muscle tone can cause constipation. dehydration, as well as increased Prolonged sitting can also lead thirst and confusion. to constipation, as the effects of gravity can help to move food For more information see the Myeloma bone through your intestines. disease and bisphosphonates Infoguide from Myeloma UK Stress, anxiety and Periods of prolonged stress, Poor diet/loss of appetite anxiety or depression may cause If your diet is lacking in essential constipation. nutrients, particularly fibre, then you are more likely to become For more information see the Infopack for constipated. Fibre helps keep your living well with myeloma from Myeloma UK bowels healthy and active. It also helps keep your faeces soft and Change in routine increases the speed with which your food is digested. You may not Many people become constipated be eating enough fibre if you have a as a result of a change in their supressed appetite. daily routine – this can sometimes

6 www.myeloma.org.uk happen during a stay in hospital self-management and an over-the- when your normal diet is disrupted counter treatment. However, if your or if you are travelling long distances constipation persists for more than to appointments. a few days, you should speak to your doctor or nurse. Other illnesses and conditions and their treatments Laxatives Other illnesses and conditions If your doctor decides that you need that some myeloma patients may a prescription treatment for your have can cause constipation, constipation you are likely to be for example Parkinson’s disease prescribed a laxative. Laxatives are or an underactive thyroid a group of oral drugs used to relieve (hypothyroidism). constipation. They are available as Treatments for other illnesses tablets, liquids and powders. or conditions may also cause If you are taking any treatments that constipation, for example some anti- are known to cause constipation depressants (e.g. amitriptyline). (e.g. strong painkillers) then it You can check whether any other may be worth checking with your treatment you are having can cause doctor to see if you need to take a constipation by consulting the mild laxative regularly to prevent PIL included in the drug pack. You constipation. should make your doctor or nurse Table 1 outlines the different types aware of any other treatments you of laxatives that are commonly are taking for other illnesses or available for constipation and their conditions. possible side effects.

How is constipation treated? Other treatments There are many over-the-counter If your constipation is not relieved by remedies available to relieve oral laxatives, then you may need to constipation as well as a number of have a suppository or an enema. prescription-only treatments your These are treatments given directly doctor may consider. into your back passage and, If you notice symptoms of though uncomfortable, they can constipation, you may benefit be extremely effective at relieving from first visiting your local acute constipation. It is important, pharmacists for practical advice on however, that you only use

Infoline: 0800 980 3332 7 Type Examples How they work Side effects Notes Bulk Fybogel Supplement Not suitable forming Celevac dietary fibre and swollen for immediate laxatives stomach, relief Normacol Increase weight and softness of wind Must be taken faeces with at least Can take several one glass of days to work water Stimulant Senna Cause the Stomach To be taken at laxatives Bisacodyl muscles in cramps and night the bowel to swelling, Co- contract wind danthramer Can take 8 – 12 hours to work Osmotic Increase the Stomach Must be taken laxatives Lactitol amount of water cramps and under medical retained in swelling, supervision the intestines, wind, therefore type pain making the faeces softer Can take up to 3 days to work Stool Arachis oil Increase the softener Docusate fluid content of laxatives sodium stools making them softer Table 1. Types of laxatives used to treat constipation. suppositories and enemas under the platelet count is low. advice of your doctor or nurse: this is because they should not be used Natural treatments regularly, and could cause bleeding There are many natural treatments from your back passage if your available to treat constipation, most

8 www.myeloma.org.uk of which can be bought without a cakes, sugar prescription. „„Ensure that you are well hydrated These include: – drink 2-3 litres of water a day. „„Fibre supplements e.g. bran or Hot drinks, such as decaffeinated psyllium husks – these must be coffee, tea or hot water with a slice taken with at least one glass of of lemon may help to stimulate a water bowel movement, especially if had with breakfast „„Flaxseed (or linseed) oil or seeds – these must also be taken with at „„Avoid caffeine, because least one glass of water although it can stimulate your bowels, caffeine can also cause „„Syrup of figs – a natural fruit dehydration which can make remedy constipation worse Sometimes natural treatments can „„Avoid because it can also interact with other treatments that cause dehydration and make your you may be taking so it is important constipation worse to inform your doctor or nurse about any natural treatments that you wish „„Try to incorporate gentle exercise to try. into your day. This can be walking, swimming or other low-impact Tips for self-management and exercises. If you have difficulty prevention exercising, moving your muscles and limbs while sitting may help There are many things you can try to help prevent constipation or reduce „„Try to minimise the stress in your its severity. These include: life. Relaxation exercises can often help, as can talking about your „„Increase the amount of fibre worries in your diet. High fibre foods include bran-based cereals, fruit, „„Aim to have a regular time when vegetables, beans, pulses and you go to the toilet, for example wholegrain bread shortly after breakfast. If possible try not to hurry and avoid „„Eat prunes and other dried fruits straining when trying to open your „„If your appetite is poor then eating bowels small amounts of high fibre foods „„Use a footrest while you are going throughout the day may help to the toilet to raise your knees „„Limit the amount of refined food above your hips that you eat e.g. white bread,

Infoline: 0800 980 3332 9 What are the causes of diarrhoea Diarrhoea in myeloma patients?

What is diarrhoea? Myeloma treatment Diarrhoea is the passing of loose or Some treatments for myeloma can watery stools more than three times cause diarrhoea. They include the a day. drugs bortezomib and panobinostat If you have diarrhoea, it is important (Farydak®), which can cause acute to deal with it straight away, as onset diarrhoea, meaning it can excessive loss of water through occur within 24 hours of treatment your stools can lead to dehydration, beginning. which can be serious. Dehydration Other established treatments for is more likely to occur and is more myeloma such as lenalidomide and serious in the elderly. pomalidomide (Imnovid®) can cause Diarrhoea can have a significant late onset diarrhoea which may impact on your quality of life. It can start many months after treatment make you anxious about leaving beginning. your home and make you feel limited in what you can do. Infection Certain bacterial and viral infections What are the symptoms of cause diarrhoea. These infections diarrhoea? are often contagious, so if you have The symptoms of diarrhoea include: been around others who have had stomach bugs it is not uncommon „„More than three loose or water to pick up an infection too, especially bowel movements per day because myeloma patients have a „„Cramping stomach pains higher risk of developing infections. „„An urgent need to go to the toilet Other symptoms of an infection „„Nausea or vomiting include nausea, vomiting, abdominal cramps and pain, a high „„Fever temperature and loss of appetite. It „„Headache is important to tell your doctor if you „„Loss of appetite suspect your diarrhoea is cause by an infection.

For more information see the Infection and myeloma Infosheet from Myeloma UK

10 www.myeloma.org.uk Constipation and laxatives treatment you are having can Excessively water or runny cause diarrhoea by consulting the diarrhoea may occur as a result PIL included in the drug pack. You of constipation, as your bowel is should make your doctor or nurse blocked with hard faeces, so only aware of any other treatments you loose and watery stools can make are taking for other illnesses or their way past the blockage. conditions.

Laxatives used to treat constipation How is diarrhoea treated? can also cause diarrhoea. Your doctor will assess the cause of Stress, anxiety and depression your diarrhoea to determine what treatment is right for you. Periods of prolonged stress, anxiety or depression may cause diarrhoea. If your diarrhoea is a side effect of your myeloma treatment, your For more information see the Infopack for doctor may adjust your treatment living well with myeloma from Myeloma UK schedule, reduce the dose or temporarily stop treatment until it Acid (BAM) improves. If the diarrhoea does not improve after these adjustments, BAM is a condition where patients it may be necessary to stop the do not absorb bile acids properly treatment altogether and find an from their intestine. This can cause alternative instead. diarrhoea and has been identified as the cause of diarrhoea in some Often other causes of diarrhoea, like patients taking lenalidomide. a mild stomach upset, can resolve themselves and so treatment for Other illness and conditions and diarrhoea may not be necessary. their treatment However, any complications that have arisen, such as dehydration, will Other illnesses and conditions need to be treated. can cause diarrhoea, for example inflammatory bowel disease (IBS) or Prescribed treatments . If your doctor decides that you Treatments for other illnesses need treatment for your diarrhoea or conditions may also cause then you may be prescribed a diarrhoea, for example antibiotics. treatment to slow down the motility You can check whether any other (movement) of the bowel, examples

Infoline: 0800 980 3332 11 Type Examples Side effects Antimotility drugs Abdominal cramps, (Norimode, Imodium) dizziness, drowsiness and skin reactions painkillers Codeine phosphate Antispasmodic drugs Dicycloverine Bloating, , Hyoscine butylbromide constipation, dry (Buscopan) mouth Atropine

Table 2. Types of treatment for diarrhoea. of which are listed Table 2. the best course of treatment for the infection and diarrhoea. Over-the-counter treatments Painkillers, like , can There are treatments for diarrhoea be taken to help any discomfort available over-the-counter, for or pain experienced. However, ® ® example Norimode , Imodium myeloma patients should not take ® and Buscopan , many of which non-steroidal anti-inflammatory have the same active ingredients drugs (NSAIDs) such as as as prescribed treatments. It is NSAIDs can worsen damage advisable to check with your doctor which is a common in or nurse before you take any over- myeloma patients. the-counter treatments and do not take loperamide for more than two For more information see the Myeloma and days for treatment of diarrhoea the kidney Infoguide from Myeloma UK without checking with your doctor or nurse. BAM treatment If your diarrhoea is caused by an If you are found to have BAM, infection, it is not advisable to use you will need to modify your diet over-the-counter treatments as to reduce your fat intake. Your these may ease symptoms without doctor will usually also prescribe a dealing with the underlying infection. treatment, for example . Your doctor will be able to determine

12 www.myeloma.org.uk Treating complications of skin and instead try warm (not hot) diarrhoea water baths, a bidet or a sitz bath and allow the skin to air dry or gently Dehydration dab the area dry. Rehydration salts (for example Sitting down for long periods of time ® Dioralyte™ and Electrolade ) can may worsen any soreness so try treat dehydration due to diarrhoea. to avoid prolonged sitting and use They provide a mixture of salts cushions to soften the seat. needed by the body to replace those that have been lost in your stools. Tips for self-management Rehydration salts are available over- There are ways to help manage the-counter as a powder in sachets diarrhoea at home: or in form and are dissolved in water to drink. „„Keep hydrated by drinking clear fluids such as water, diluted juice, Skin discomfort sports drinks or soup/broth. Take Frequent diarrhoea can cause frequent small sips rather than discomfort to the skin around your drinking large amounts of fluid in anus and it may become sore. one go There are creams that can help to „„Avoid drinks that contain lots of soothe the area and prevent the skin sugar (e.g. cola or fizzy drinks), from breaking which can happen alcohol or caffeine in severe cases of diarrhoea. Ask „„Use rehydration salts your doctor or nurse about soothing creams. „„Try to keep eating small, frequent meals made from light, plain foods Frequent wiping can make the skin – soup, potatoes, bananas, bread, around your anus irritated, so use pasta or . Avoid highly spiced high quality, soft toilet tissue. You or fatty foods that might upset can also try using moist toilet tissue your stomach and eat your meals to wipe the area or damp cotton slowly wool, both of which can be less aggravating than dry toilet tissue. „„Some found in live Avoid any wipes which contain yoghurt or live-yoghurt drinks alcohol. may help to ease diarrhoea caused by antibiotics. Antibiotics It is important to keep the area clean can kill off the healthy bacteria and dry as much as possible. Avoid normally found in the bowel, but using soaps which can irritate the

Infoline: 0800 980 3332 13 the bacteria found in live yoghurt available which can help you access may replace them. However, you the toilet more easily. should avoid live yoghurt if your white cell count is low. If you are Summary unsure whether this affects you, It is important to be honest with check with your doctor or nurse your doctor and nurse about any „„Plan ahead and find out where the gastrointestinal disturbances you nearest toilet is if you need to go are having. out, so if you need to get to a toilet If left untreated, nausea, vomiting, quickly you know there is one constipation and diarrhoea can nearby have a significant impact on your „„Be prepared and keep a change quality of life and lead to serious of clothes, spare toilet roll and a complications, so report any bottle of water in your car or a bag changes to your doctor and nurse if you are out of the house as early as possible. This will enable „„Wear clothes that are easy to pull them to help manage the issues as on and off, that are comfortable quickly as possible. and not too tight, such as trousers About this Infosheet with elasticated waists The information in this Infosheet „„Wear cotton underwear is not meant to replace the advice „„Always wash your hands with of your medical team. They are the soap after going to the toilet. If people to ask if you have questions your hands are getting dry from about your individual situation. the soap, use a hand moisturiser For a list of references used to after washing develop our resources, visit It is not uncommon to have an www.myeloma.org.uk/references accident if you have diarrhoea. If you To give feedback about this can’t get to the toilet easily because publication, email you have difficulty with mobility or [email protected] it is located in another area of the house (e.g. upstairs), you might find a commode helpful. These can be positioned around the house and can help prevent accidents. Other toilet and bathroom aids are

14 www.myeloma.org.uk Other information available from Myeloma UK Myeloma UK has a range of publications available covering all aspects of myeloma, its treatment and management. To order your free copies or to talk to one of our Myeloma Information Specialists about any aspect of Myeloma, call our Myeloma Infoline on 0800 980 3332 or 1800 937 773 from Ireland. The Infoline is open from Monday to Friday, 9am to 5pm and is free to phone from anywhere in the UK and Ireland. Information and support about myeloma is also available around the clock at www.myeloma.org.uk

Published by: Myeloma UK Publication date: May 2018 Last updated: July 2018 Review date: July 2021

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Myeloma Awareness Week 21 - 27 June