Your life with a stoma Useful information

Transcription

1 Your life with a stoma Useful information

2 your life with a Stoma Dansac is dedicated to stoma care. Not only do we strive to give you the very best products, we also provide a wide range of unique brochures and books on various topics related to living with a stoma. Information for you as an ostomate - but also information that might be useful for your spouse/partner, family, and friends. Over the years, Dansac has developed a series of materials to give you practical, step-by-step information regarding stoma care, hints and tips, getting fit after surgery, as well as inspiration from other ostomates on how to live life to the fullest with a stoma. So how do you deal with the fact that you are having a stoma? What information and support you need differs from person to person and varies from one phase of your adaptation process to the next. Your life with a stoma is created to give you an overview of the phases you might go through when you realise that you will have to live with a stoma temporarily or permanently. For each phase, you can see which materials are offered by Dansac to give you further information, and you can easily order any materials you wish to receive using the detachable postcard. The enclosed booklet, My Notes, will help you to collect all your medical information together, along with all your personal notes, thoughts, and questions. We hope you will find the materials useful. Dansac A/S BEFORE SURGERY Hospitalization RecoveRY life LIFE Recovery Hospitalization BEFORE SURGERY Dedicated to Stoma Care

3 The emotional side of getting a stoma When a person gets a stoma it may be as a result of an accident, long term disease, or a newly diagnosed illness needing acute or even emergency treatment. Each of these factors may impact on quality of life. For some people, a stoma will be seen as a relief from severe inflammatory bowel disease or cancer; others will think of it as something unexpected and unwanted, making it difficult to accept or manage. Having a stoma can cause great anxiety and stress. Getting used to living with a stoma takes time - no matter how much support and information you may get from skilled and helpful doctors and nurses. For most people it means going through emotions like: Loss - in this case the loss of a bodily function Low self-esteem Shame or embarrassment Thoughtfulness Anger Fear and/or anxiety Perhaps you will be struggling with thoughts like Why me? or What have I done to deserve this?. These are thoughts and emotions which can be difficult to put into words or to speak about. Experience shows that before we come to accept the inevitable and are thus ready to move on, we have to start by acknowledging our difficulties. Once we do, we can find countless examples of people with a stoma who live full and satisfying lives. The sequence of emotions may vary from person to person, but many experience something similar to the order described below. Shock the initial stage It is perfectly normal to be in a state of shock at first. Some feel as if their thoughts and emotions are paralyzed as if the situation is almost surreal. At this stage, it can be difficult to accept advice and support. Often, what you need most is just for the hospital staff to be present and to listen to you and provide you with the necessary care and treatment. Grief and anger The initial shock is often followed by a strong feeling of loss. When you get a stoma, you actually lose one of your normal bodily functions. Your body has been altered. Your reactions may resemble those you experience when grieving and feeling sad is only normal. For some people, crying may act as a release, whilst others feel more reserved about showing emotions. Remember, hospital staff are professionally trained to handle situations like this. Your emotions may also be expressed through signs of irritation and anger towards the hospital staff and/or your relatives. You may also experience LIFE Recovery Hospitalization BEFORE SURGERY

4 feelings of shame, anxiety or fear. Such feelings are often related to thoughts about your body, your partner and your sexuality. It is important for your relatives to be aware of this process and for them to try to understand and accept your feelings and reactions. More information It can be helpful to express your thoughts and emotions. However, you might be annoyed if you feel that they people are making light of your stoma and trying to minimize its impact on your emotions. Jamie, colostomy Picture from Life with a stoma At this stage, it often helps to get more information about the general implications of having a stoma. Advice and information regarding your emotions and how will it affect your sex life will be relevant to you, whenever you feel ready for them. Timing is everything Maybe you find it hard to express your concerns regarding your situation? The hospital staff are trained to help you, but they will need an indication from you when you are ready to deal with these issues. Perhaps you prefer to get the necessary information in writing before you feel comfortable asking questions? Timing is an important factor and it differs from person to person as to when they feel ready for more information. Acceptance and adjustment For some it takes a long time to get used to living with a stoma others adjust more quickly. Most people, however, vary between shock, anger, grief, and acceptance. At times you may seem to have fully accepted your stoma, only to feel angry and discouraged again the next day. People vary enormously as to how open they are about their stoma. Some are very frank about it, while others adopt a low-key approach. It is important to pay attention to what feels right for you. For many ostomates, however, talking to other people who have a stoma seems to be a positive experience. Talking to others who have a stoma might help you to feel better - both mentally and physically. Rita Poulsen, Psychologist Danish Cancer Association LIFE Recovery Hospitalization BEFORE SURGERY

5 BEFORE SURGERY Hospitalization Recovery LIFE Shortly after I was diagnosed, a good friend of mine who has a stoma, phoned me: come around for dinner and I ll show you what a stoma is. It was wonderful to have a friend who was so open about it. He told me about his life with a stoma and how a stoma bag functioned and so on. It made it a lot easier for me to accept the situation. Niels, colostomy Your stoma care nurse will give you information about your stoma surgery and the placement of your stoma. Dansac has created a personal trainer kit with a piece of foam shaped to look like a stoma. It allows you to simulate having a stoma and it gives you a chance to try out stoma care products and wear a pouch. This can help you to prepare for the new situation you will be in. LIFE Recovery Hospitalization BEFORE SURGERY BEFORE SURGERY BEFORE SURGERY

6 Most people know very little about what a stoma is before they find themselves in a situation where this knowledge is relevant. If and when stoma surgery is necessary, a series of questions will appear. You can request a series of information materials about stoma surgery and stoma care from your stoma care nurse and the local Dansac office, and learn from the experiences of other people who already live with a stoma. These materials should hopefully provide you with valuable information, and help you to find a way to ask the health care professionals your own questions. BEFORE SURGERY Lene, ileostomy before Surgery material Life with a stoma Life with a stoma Stoma surgery step-by-step Describes the anatomical aspects of stoma surgery. Provides information about the surgery and explains the expressions used by the doctors and nurses to describe the operation. Life with a Stoma Book Five personal stories of life with a stoma. Honest, moving and inspiring interviews to give ostomates and their relatives a glimpse of the life of fellow ostomates. Life with a Stoma Film Niels, Sif, Jamie and his mother Sarah in very personal and honest interviews on life with a stoma. Getting Fit after stoma surgery Helps you get back on track after stoma surgery. With hints and tips, information about the corset, and exercises to be done from the first day after surgery. Personal Trainer kit A test kit that makes it possible to simulate a stoma so pouches and changing procedures can be tried out before the surgery. Please send me a free copy of the following material Stoma surgery step-by-step Life with a Stoma/book Life with a Stoma/film Getting Fit after stoma surgery Personal Trainer kit Yes, I would like to receive other marketing materials from Dansac. Dansac A/S Lille Kongevej 3480 Fredensborg Denmark Name: Address: Postcode/City: Tel.no.: Hospitalization Recovery LIFE

7 BEFORE SURGERY Before I had my stoma, I was wondering if I d be able to do all the things that I d been able to do before... What about my clothes?... Would it restrict my social life?... I had all these thoughts and questions going through my head before I had the stoma. Marianne, urostomy You can start exercising from the first day after surgery. Start with the simple abdominal and pelvic floor exercises shown in the book Getting fit after stoma surgery. The correct exercises promote healing and help you regain control of your body. Hospitalization LIFE Recovery Hospitalization

8 Following stoma surgery, you will be in hospital for some length of time. Both physically and mentally you have to get used to the stoma. At the same time, you might be in pain while your wound is healing. At this stage, the best advice comes from the health care professionals around you. They are familiar with your situation and they will be able to guide you individually. Also if you want to talk they are trained to help you through difficult times. Hospitalization Picture from Getting fit after stoma surgery Hint & Tips series The series contain a compilation of hints and tips from the University of Life experiences from ostomates and health care professionals. From coping with daily stoma care following your operation, to travel, food management, sex and relationships. Each book is dedicated to a particular stoma type: Hint & Tips - Colostomy Hint & Tips - Ileostomy Hint & Tips - Urostomy Stoma Care Kit A selection of products and accessories for your personal stoma care. Please send me a free copy of the following material Hints & Tips Colostomy Hints & Tips Ileostomy Hints & Tips Urostomy Stoma Care Kit Yes, I would like to receive other marketing materials from Dansac. Dansac A/S Lille Kongevej 3480 Fredensborg Denmark Name: Address: Postcode/City: Tel.no.: Recovery LIFE

9 At the beginning I was convinced that the stoma pouch was rustling. There was nothing my husband could do to convince me that it didn t make as much noise as I thought it did. I thought that he was trying to protect me. But actually, he really meant it. He honestly couldn t hear the noise I was hearing. Marianne, urostomy While you are getting used to the practicalities of having a stoma, look for ways to add more physical activity to your daily schedule. Take a short walk or use the stairs instead of the elevator. It helps the healing process and gives you more energy. LIFE Recovery Hospitalization Recovery

10 When you leave the hospital, your life with a stoma begins. Psychologically, you begin to understand and accept. You now have to learn a number of new skills. This is a process - and confidence will evolve over time. Recovery Marianne, urostomy Picture from Life with a stoma What s on your tummy, Emil Step-by-step illustrated instructions for stoma care of a premature child with NEC. Good advice for parents and ordinary nurses in paediatric wards. Care at home series The Care at home brochures illustrate stoma care and pouch changing for either a 1-piece or a 2-piece appliance. Each step is illustrated by colour photos. Also included are tips & tricks for daily stoma care. Care at home Colostomy Care at home Ileostomy Care at home - Urostomy Please send me a free copy of the following material What s on your tummy, Emil Care at home Colostomy Care at home Ileostomy Care at home - Urostomy Yes, I would like to receive other marketing materials from Dansac. Dansac A/S Lille Kongevej 3480 Fredensborg Denmark Name: Address: Postcode/City: Tel.no.: LIFE

11 I knew from others with a stoma that I might end up breaking wind sometimes and they gave me good advice on how to deal with such situations. For example: if you are in the theatre and you break wind - just start looking at the persons sitting next to you! That s the way to deal with it. Niels, colostomy When travelling, take a list of translated phrases regarding your stoma with you. If possible, find local contact information for a supplier of stoma care pro-ducts. It is a good idea to bring the name, address and telephone number of this company on your travels. Your local stoma association will often be a good resource for this type of practical information. Recovery LIFE Niels, colostomy Picture from Life with a stoma LIFE

12 A period of illness, surgery and recovery is stressful for the body and mind. As a general rule, you will slowly be able to pursue the same activities as before your surgery. Listen to your body and do not overdo it in the first months after surgery. Take control of your life and find ways of living with your stoma that suits your lifestyle. LIFE Body Image Initiated by Professor Michael Kelly, this book covers all aspects of fear, anger and people s reactions to having a stoma. It describes what can happen to the body following stoma surgery, as well as the emotions that might be experienced as a result of the changes. What about Sex Addresses issues experienced in the process of resuming daily life after stoma surgery. Straight-forward information on topics related to sex and having a stoma i.e. questions on recovery, body image, new partners and enhanced quality of life. Irrigation Step by Step Illustrates irrigation (a method of cleaning the bowel by instilling water via the stoma at regular intervals) and pouch changing at home. Each step is illustrated by colour photos. Also included are irrigation advice and tips for daily stoma care. Dansac products Dansac offers a wide range of modern products to suit any stoma type and to support any lifestyle. Please send me a free copy of the following material Body Image What about Sex New product samples Irrigation Spep by Step Yes, I would like to receive other marketing materials from Dansac. Dansac A/S Lille Kongevej 3480 Fredensborg Denmark Name: Address: Postcode/City: Tel.no.:

13 Dansac products A correctly fitted pouch is essential for your well-being. Over time, your need for stoma care products might change as you adapt to living with a stoma. Your stoma care nurse will be able to help you with information on alternative products available on the market. Dansac develops innovative and modern stoma care products suitable for all stoma types. As an example, Dansac has launched a new colostomy pouch with an inner pouch that can be flushed down the toilet. It is simple and hygienic. The nurse or your local Dansac office will be happy to supply you with product samples so you can try different pouches and find the perfect product for your specific individual needs. Life life

14 BEFORE SURGERY Hospitalization RecoveRY life BEFORE SURGERY Hospitalization RecoveRY life Notes Notes

15 BEFORE SURGERY Hospitalization RecoveRY life BEFORE SURGERY Hospitalization RecoveRY life Notes Notes

16 Dansac Lille Kongevej 3480 Fredensborg Denmark Telephone: Fax: Visit - an international web site where ostomates, families, friends and clinicians can come together to meet, learn and share real-life experiences and advice. For a full range of material released in English, please visit

17 XX-XXXX /08 Dansac Lindegaard & Co Dansac A/S Lille Kongevej DK-3480 Fredensborg Denmark Phone: Fax: Dedicated to Stoma Care