Living with an. ileostomy

Transcription

1 Living with an ileostomy

2 Ileostomy Introduction Every year thousands of people have ileostomy surgery. For some the surgery is a lifesaving procedure. For others the surgery relieves years of suffering from bowel disease. Whatever the medical reason, anyone who is going to have ileostomy surgery has many questions and concerns. The purpose of this booklet is to answer some of your questions about ileostomy surgery and to ease some of your concerns about living with an ileostomy. Your health care team provides this booklet to you. The booklet will supplement other information given to you by your doctor and your stoma care nurse. Your stoma care nurse Contact numbers Living with an ileostomy Living with an ileostomy

3 Contents The digestive system 6 Surgery 8 Location of the ileostomy 10 Appearance of the ileostomy 10 Touching does not harm 10 Collection of faeces after surgery 11 Discharge 12 Different types of ileostomy bags 12 Change of bag 12 Emptying an open-end bag 13 Change of the adhesive disc 14 Odour and gases 15 Back to living a normal life 16 Clothing 17 Bathing 17 Diet 17 Exercise and sports 18 Sexual relationships 18 Travel 19 Everyday life 20 Practical tips 21 After the operation 21 Constipation 22 Skin irritation 22 Problems with the ileostomy 23 Assistance 24 Patient clubs 24 Reimbursement 24 Assistance at home 24 Other appliances 25 Choice of bags 25 Paste 25 Prep 25 Appliance Deodorant 25 Personal notes/questions 26 Personal details 27 Living with an ileostomy Living with an ileostomy

4 The digestive system The food we eat passes through the gullet (oesophagus) into the stomach. Here enzymes and gastric juices from the stomach and the small intestine start the digestive process. The food becomes fluid and the absorption of nutriment and vitamins starts in the small intestine. The small intestine is some 6-7 metres long. In the large intestine and the rectum the remaining liquids, mineral salts and vitamins are absorbed from the food. Undigested food therefore has a firmer consistency when it leaves the large intestine and is now referred to as faeces or stools. The stomach as well as the small and large intestines are all located in the abdominal cavity. The large intestine begins in the lower, right-hand side of the abdomen. It ascends and crosses over from the right side of the abdomen to the left from where it descends again to end in the rectum. Stomach Small Intestine (lleum) Large Intestine (Colon) Rectum Living with an ileostomy Living with an ileostomy

5 Surgery What is an ostomy = A man-made opening Ileo = Small intestine Main reasons for creating an ileostomy Ulcerative colitis (Colitis ulcerosa) Crohn s disease Familial polyposis Fistulas Traumas Obstruction Irradiation damages If the small intestine is diseased, surgery may be required. The diseased part of the small intestine is removed, and in some cases it is also necessary to remove both the large intestine and the rectum. The healthy part of the small intestine is then diverted to an opening in the abdominal wall where it is fastened with a few stitches to the skin. In medical terminology, this is called an ileostomy. The small intestine is called the ileum, while ostomy means artificial opening. After surgery, your faeces no longer leave the digestive system through the rectum. Instead the ileostomy serves to divert faeces from the small intestine through the opening in the abdominal wall. Location of the ileostomy In most cases the ileostomy is performed on the right-hand side of the abdomen, slightly below the navel. Ileostomy Appearance of the ileostomy The ileostomy is red, nearly the same colour as the mucous membrane of your mouth. Normally it is round, but it may be slightly elongated. It s normal size is 2-4 cm in outer diameter, and it protrudes some 3-4 cm. Just after the surgery the ileostomy is swollen, but it gradually becomes smaller. Therefore, it is very important that the hole in the adhesive disc is gradually cut smaller in order to get a proper fit. The opening itself is very small, and it will expand during discharge. Living with an ileostomy Living with an ileostomy

6 Touching does not harm! There are no nerves in the mucous membrane, so you will not feel anything when touching the ileostomy. The ileostomy may bleed a little when touched, for example when you change the bag or cleanse the skin around the ileostomy. This is quite normal and is no cause of concern. If the ileostomy keeps bleeding, you should see your doctor about it. You should, however, keep an eye on the ileostomy to make sure its colour is right and that it does not bleed too often. Collection of faeces after surgery Normally, people can retain their faeces until they go to the toilet. With an ileostomy this is no longer possible. There is no sphincter to close the intestinal opening like there is in the rectum. Instead, the output from the intestine is evacuated through the ileostomy as it is produced and collected in a open-end bag attached to your abdomen. If skin is exposed to intestinal output, the enzymes etc. will irritate it contained in the gastric juices. Therefore, you should keep the skin around the ileostomy clean and dry. How will the faeces be? The quantity of faeces that will come from the ostomy when everything has stabilized after the surgery can fluctuate between ml per 24 hours, depending on fluid and dietry intake The consistency is half firm to thin and will fluctuate after what you have eaten and drunk The smell is a little bit stronger than normal The faeces will not come regularly but it flows anytime both day and night 10 Living with an ileostomy Living with an ileostomy 11

7 Discharge Different types of ileoostomy bags The bags are designed with an opening at the bottom for emptying. Therefore, it needs to be changed less often. You can also choose between opaque bags and transparent bags. Change of bags Most ileostomists empty the bag 6-10 times a day depending on the volume of their output. In order to dispose of a used bag, the bag is emptied into the toilet or other suitable container, and then the bag can be disposed with household rubbish (do not flush it through the toilet). Emptying an open-end bag Most people sit on the toilet while emptying the bag. Some do it standing up. You do it by simply pointing the bag down into the toilet while unrolling the bottom part of the bag. Hold the bottom part slightly upwards while doing this to avoid that it is emptied too soon. When you have unrolled the bottom part, keep pointing it downwards to allow all the bag contents to run out. Press gently on the sides of the opening to allow easy discharge. When the contents have run out, clean the bottom part of the bag. Some hold it into the flush, others wipe it with toilet paper, and others will do both. Then roll up the bag again and close it. How to change a bag Take your time Have everything ready before changing Carefully remove the bag or the baseplate Take the used bag and put it in a disposal bag It is very important that the skin is dry before you replace a new bag or baseplate The easiest way to change a bag is by standing up Use soft material when you wash the skin around the stoma Remove any superfluous hair around the stoma Adjust the bag so it will fit exactly by using the pattern/measurement Make sure that the pattern is correct if not contact your stoma care nurse When you place the new bag or baseplate you must begin at the lower part of the stoma Use your finger to go around the edge of the stoma in that way you secure that the adhesive stick to the skin. 12 Living with an ileostomy Living with an ileostomy 13

8 Change of the adhesive disc The appliance should be changed if any leakage occurs or if the adhesive is not working properly any longer. To prevent further leakage, a tighter seal around the ileostomy is required; you may use paste to achieve this. Climate, diet and medical treatment can influence the condition of the skin, making the need for changing the appliance more frequently. One of the most important things to remember is to take good care of the skin around the ileostomy. If the bag does not fit as snugly around the ileostomy as it should, the skin becomes exposed to the harmful effects of the faeces. Leakage, as well as removal of the bag too frequently and the use of harsh skin cleansers can also cause some irritation of the skin. It is a very good idea to always have a soft cloth when changing the adhesive disc because the iliostomy may drip. Odour and gases Odour is a major concern for people who are about to have ileostomy surgery. Today, ileostomy bags are made of odour-barrier film, so odour from the stool is contained inside the bag. If the bag is clean, and is applied properly, you should notice odour only when you are emptying or changing your bag. If you notice odour at any other time, check the bag seal for leakage. Some ileostomists who want even greater peace in mind use complementary odour eliminators. To avoid problems with odours gases, you can use a bag with an integrated coal filter. The coal filter has a hole, through which gases escape from the bag, while at the same time neutralizing odour passing the filter. 14 Living with an ileostomy Living with an ileostomy 15

9 Back to living a normal life It is possible to live an almost normal life with an ileostomy. The ileostomy itself will not limit your activities, but the physiological side of having an ileostomy can be a burden at the beginning. Therefore, it is very important to get emotional and mental support from family and friends, particularly at the early stages. The practical routines cause few problems. For some it takes time to get used to the thought of having an ileostomy. Diet Most people can eat and drink the same as before the surgery. Some foods and beverages may tend to produce more flatus or more fluid faeces. You will gradually figure out what is ok and what to avoid. Some people find there is more flatus when they have been eating eggs, cabbage, onions, peas, asparagus or chocolate, or when they have been drinking beer or frizzy lemonade. A few important rules will, however, see you through. Your diet should be varied; you should make sure to keep regular meal times and to chew the food carefully. Perhaps the thought of faeces may be unpleasant! Take your time to think it over! Although you do not normally talk about your faeces, they are after all a natural part of life. Other people will not know you are wearing a bag unless you tell them. After a while, when you have got used to the routine of emptying and changing bag, you will not give it much thought in your daily doings. You need not necessarily tell everybody about your ileostomy, but you should, obviously, talk about it with the people you live with. Many ileostomists find they have benefited from discussing it also with people with whom they do not have a close relationship. You will be at ease if you can talk about your ileostomy without embarrassment. You can often talk to children about your ileostomy quite openly. If they feel that you accept it, they will normally accept it, too. Clothing You can use the same clothes as before the surgery. Bathing With an ileostomy, you can shower or bath just as you did before. Soap and water will not flow into your ileostomy or hurt your ileostomy in any way. You may choose to shower or bath with your bag on or off - the choice is yours. 16 Living with an ileostomy Living with an ileostomy 17

10 Exercise and sports Most ileostomists can continue exercising and be active in sports like they used to before the surgery. The ileostomy itself does not prevent you from doing exercise, but of course it all depends on whether you feel fit. You may also swim, both in the sea and in public swimming pools. Sexual relationships Have in mind that the ostomy has not changed you as a person. It can be difficult to resume marital relations. Speak with your partner about how you feel. Take one step at a time, perhaps you need some time to accept your ostomy. After some time it will be much better. Some people will notice sexual problems after the surgery. Reasons can be both physical and mental. As soon as you have done so, you will probably find that you can enjoy just as natural a sex life as before the surgery. People tend to believe that an ileostomy will be a barrier to a normal sex life, but you should be aware not to create a false problem. Before sexual intercourse, you may change to a smaller size of bag or use a special mini cap. Travel An ileostomy need not prevent you from travelling. In most countries you may buy extra bags and accessories. But to be on the safe side, bring along all the bags you will need while travelling. If you are travelling in warm regions where you are likely to sweat more, remember that you will use more bags than normally. If you do not already use bags with soft backing, you may use a special cloth cover to prevent the plastic bag from sticking to your skin. It may be that the heat affects your skin, so remember to take along lotions for cleansing and care of the skin. 18 Living with an ileostomy Living with an ileostomy 19

11 Practical tips Everyday life After ileostomy surgery people tend to think that they can no longer lead a normal life. It can be difficult to accept the fact that you will have to wear an ileostomy bag on your stomach. Little by little you will realize that you can actually live almost like you did before. Most ileostomists will confirm this. Normally, it will be almost impossible for other people to notice the ileostomy and ileostomy appliance, but it is recommended not to use tight-fitting clothing. The bag is made of a noiseless and odour proof material that will not give away your secret. After the operation Once you have got through the first few days after the operation, you will learn how to empty and change the bag and take care of the skin around the ileostomy. You may have difficulties to start with, but as long as you take your time, you will soon know the tricks. During the first few months, an ileostomy is normally slightly swollen, so you will need to use a bag with a larger hole than the one you will eventually use. When the ileostomy contracts to its normal size, you will be able to find the bag that fits your ileostomy exactly. Constipation If the faeces are firmer than normally, you may feel discomfort and pain. Foods like oranges, nuts, asparagus and mushrooms are digested slowly and therefore tend to cause constipation, so perhaps you should avoid these. Returning to work after surgery depends on your general health and strength. You should consult your doctor or nurse. Any patient who has undergone major abdominal surgery will be advised not to return to work involving heavy lifting until complete healing of the abdominal muscles has occurred; this will take several months. With constipation you should eat more fresh vegetables and fruits but avoid milk products. Exercise may stimulate bowel movements. If constipation continues, you should see your doctor. 20 Living with an ileostomy Living with an ileostomy 21

12 Skin irritation If the skin becomes irritated and red, tender or oozing around the ileostomy, it should be looked after with special care. Be careful when you remove the appliance. Gently remove any residues of adhesive material with cleansing lotion. Problems with the ileostomy In some cases problems will arise and you may need to see your doctor about your ileostomy: Never use benzine or other solvents. Avoid soap. Once you have cleansed the affected area, you may dab it with crystal violet solution (0.5%) or with boracic solution, which inhibits the growth of bacteria and fungi (available from your chemist). Your ileostomy may be drawn inwards, so that it will be difficult to apply the bag (retraction). Change the appliance if the slightest leakage occurs. Spread a thin layer of Critic barrier cream on the affected area before applying the new appliance. It is important that you wait a few minutes before applying the new bag or baseplate and let the creame soak into the skin. Make sure the appliance fits well, so that no secretions may leak. Intestinal secretions affect the skin after only a short time and make it red and irritated. To make the adhesive fit exactly, cut it to size after sketching its shape on the protective paper. You can make a template by placing a sheet of plastic foil or the Coloplast cutting guide directly over the ileostomy, using it as your model. Use curved scissors to cut a hole in the adhesive disc to fit the ileostomy. The two-piece system gives added convenience. You then only need to change the bag, while the adhesive disc remains in place for several days and the skin is left alone while healing. The ileostomy may turn inside out, more than normally (prolapsed) - if your abdominal muscles are weak, a bulge may appear near the ileostomy with the intestines pressing on from behind (a hernia). Slight bleeding, for example when changing and cleansing the skin, is no matter of concern. You should, however, keep an eye on the ileostomy to make sure its colour is right and that it does not bleed too often. Fortunately, such problems are rare. If a problem does occur, tell it to your doctor at once so that the problem will not become more serious. 22 Living with an ileostomy Living with an ileostomy 23

13 Assistance Patient clubs There are patient associations in most countries. These associations have consultants, often ileostomists themselves, who will be available with advice and guidance. They will be pleased to come and see you at the hospital or in your home, at your convenience. Ask your health care team for more information. Reimbursement Your local social worker will help organizing practical and financial details relating to your life with an ileostomy and will also calculate the social security subsidy or reimbursement amount you will receive. Assistance at home Back in your home, a home health care nurse will usually visit you. You may also contact your general practitioner. Other appliances and accessories Choice of bag The individual ileostomist will make specific personal demands on bags and accessories. There are various types of bags and a wide range of accessories, so it should be possible to find an appliance that meets the individual ileostomist needs. It is important to notice that normally all ileostomy appliances, one or two piece, open or closed, come with specific instructions for use. Read the instructions thoroughly to ensure satisfactory use. Paste The Paste provides a secure seal and is ideal for levelling out scars, folds and wrinkles around an ileostomy or fistula, thereby providing a level surface to which any appliance can be easily and securely attached. Prep The Prep Barrier Film protects your skin from adhesive trauma, friction and chemical irritation from faeces and urine. Prep provides you with a visible barrier film of protection when applied to the skin prior to application of an ileostomy appliance. Appliance Deodorant The Appliance Deodorant functions by actively neutralizing any odour and is highly effective. Use is simple and safe - dose 6-10 drops into your appliance when you change or empty the bag and finish off by rubbing sides of appliance together to evenly disperse. 24 Living with an ileostomy Living with an ileostomy 25

14 Personal Notes/Questions Use this page to write down any questions or problems which you would like to discuss at your next appointment. Personal Details Your health care advisor will complete your details and prescription card to ensure you get the appliance recommended for you. Date Problem/Question Hospital Name of stoma care specialist Telephone number Clinic hours Name of general practitioner (MD) Name of product Order code number Additional information Appointments Date G.P./Nurse Hospital 26 Living with an ileostomy Living with an ileostomy 27

15 Coloplast A/S Worldwide Coloplast wish to be the leading supplier of medical technology products and appurtenant services within our activities and with that contribute to a better quality of life for our users. Ostomy care The ostomy care systems offer you a range of solutions for appliances and services. Our commitment is to develop these products and services in cooperation with product users and healthcare professionals, ensuring that they meet your needs. Constantly at the forefront of technology and investing in new solutions, our ostomy product range has the solution for all your needs as a user or a healthcare professional. Urology & Continence care Continence is having full control over the passing of urine and faeces. This Continence care section of our website is a guide to urinary continence. We have products that are made especially for spinal cord injured people and for senior citizens. In our efforts to make continence products that are more than merely functional, we look for design innovations that can help promote the self-sufficiency and independence of the people who use our products. Wound & Skin care Our wound care products are designed to make life easier for the users by providing a safe, comfortable and absorbent environment. The wound care products are based on advanced moist wound healing theory and technology, and incorporate aspects of chronic wound management including wound cleansing and pressure relief. Patients, physicians, nurses, therapists, researchers, medical instructors and health care administrators embrace our wound care system worldwide. Coloplast A/S Holtedam Humlebæk Telephone is a registered trademark of Coloplast A/S All rights reserved Coloplast A/S, 3050 Humlebæk, Denmark. kmr/471.