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| This pamphlet is to help you and your family or partner now you are home from hospital. |
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| Relationships with loved ones, friends and workmates are a very important part of people's lives. Many new ostomists worry that because they now have a stoma it will spoil their relationships with other people. This pamphlet has some hints on how to cope with relationships now you have a stoma. |
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| At the Outset |
| Getting Back to Normal |
| Family |
| Relatives and Friends |
| Back to Work |
| A New Job? |
| Conclusion |
| Useful Addresses |
| Swimwear & Leisurewear Suppliers |
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| AT THE OUTSET |
| Your operation will give you relief from your symptoms. However, you will have to face a number of new problems, particularly so in the first few weeks and months after the operation. Some patients will have been quite weak before surgery, others may not. You will find it takes quite a while to get back to feeling fit again. So don't expect to be back to normal straight away now you are home. Take things easy. |
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| Emotionally things may not be very easy at first. It takes some time to get used to the idea that you have a stoma. When stoma patients first get home from hospital some find they are thinking and worrying about their stoma all the time and they sometimes become concerned that they will always feel like this. Don't panic. For most people this is a passing phase. But it is worth remembering that it usually takes some months before these feelings pass. Try not to worry about this. It is really quite normal. |
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| In these first few weeks and months you will have to learn a few simple things about your stoma and to use your new appliance. You will very likely not have to deal with these things on your own. Your Stoma Care Nurse will help you and support is also available from the patient associations (see the addresses at the end of this pamphlet). This is an important time for you because being able to feel in control of your appliance is the basis of a good lifestyle. Getting used to it is sometimes difficult though. It's a bit like riding a bike or driving a car — easy when you know now, but sometimes extremely frustrating when you are trying to learn. Quite possibly you will have accidents and leakages in the early days. This happens to nearly everyone with a new stoma at first. The important thing is to use the experience of a leak or an accident as a means of coping with it the next time. You will find leaks happen less and less often the more you get used to having an appliance and you become better able to handle them when they do happen. |
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| Don't forget that you have a choice about what sort of appliance you use. Obviously if you have an ileostomy you must use an ileostomy appliance, if you have a urostomy a urostomy appliance and if you have a colostomy a colostomy appliance. But for each type of stoma there is a wide range of appliances made by different manufacturers. Just because you were given one particular type when you were discharged doesn't necessarily mean that that is the right one for you. Seek the advice of your Stoma Care Nurse, who will always be ready to help you. |
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| GETTING BACK TO NORMAL |
| At the moment you may feel that the only thing that matters in the whole world is that you have been ill and that you now have a stoma and appliance. But think back to before you were ill. You enjoyed life with relations and friends. You had hobbies and leisure pursuits which gave you pleasure. The fact that you have a stoma doesn't stop you enjoying life once again. Having a stoma will, though, place a few restrictions on what you can do and you will have to spend time daily or perhaps every four or five days (depending on what kind of stoma you have) looking after it. But this is all. Once you have mastered your stoma and the appliance and this doesn't take very long, you can largely forget about it. |
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| Modern appliances are so discreet that no one need ever know that you are wearing one. More to the point, no one who doesn't need to know or you don't want to know, has to know. You decide. It is important to make some decisions now about whom you are going to tell and how you will go about it. If you have been very ill over a period of time your friends, relatives and workmates will have been concerned about you. When they see you looking better they will not only be pleased, but are likely to want to know what has happened to you. It is, of course, for you to decide whether you tell all or part of the details to others. |
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| All new ostomists are naturally concerned about what to say to other people and may feel embarrassed and worried about it. In general, if you feel embarrassed and uncomfortable, so too will other people. The best guideline is to be open and honest with those people who need to know and say nothing to others. |
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| FAMILY |
| Ostomy surgery is major and is only done for serious or life-threatening illnesses or occasionally following a serious injury. For some ostomists, the family will know or have guessed that you have had a serious problem. They will have been worried and have suffered with you through your illness and operation. For others, the need for an operation can be a real shock to all concerned. |
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| The first thing you should talk about with your close family — particularly those who live with you — is that although you are back home you will not be back to normal straight away and that recovery takes time. They will need to make allowances for this and so will you. Do remember though there is no need for you to be a permanent invalid because of your stoma. You are on the road to a better life. Take it one step at a time and let your family know what you are aiming for. |
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| You are going to need time on your own to change your appliance. At first, changing an appliance can be a very time-consuming business. This is when you are learning how to use it and change it. Because it takes time you will need peace and quiet in the bathroom or toilet to get on with it. Make sure that everyone in our home knows that you expect to be in there for some time. It will take a little while for you to find out when the best time is for you to change your appliance. Ideally you should find a time when your stoma is not overactive. This will be determined, to some extent, by when and what you have eaten and drunk. There is no 'best' time for everyone. You will find this out by trial and error. |
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| When you change your appliance you will need access to hot water to wash the skin around your stoma. You will need space to keep all your bits and pieces (spare appliances etc.). It is not a good idea to keep your appliances stored in the bathroom; it can be rather damp and not always accessible. |
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| The stoma has become part of your life. It has also become part of your family's and your partner's life too. Some couples find it a good idea if they are both able to change the appliance so the partner without the stoma is able to change it if there is an emergency and you can't do it for yourself. This might happen if you injure your hands for example. For those of you who in other respects are able-bodied, it is important that you change your own appliance and take the responsibility for doing it. It is a bad idea to rely on someone else. A partner or a Stoma Care or other nurse is not always available for you in the community. |
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| If you have children who live with you at home, they too are part of the family who have get to live with your stoma. How much or low little you decide to tell your children and whether or not you decide to show your stoma to them, really depends on what you were like as a family before your operation and also on how old the children are. |
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| All children have questions; your own children and even your grandchildren, if you have any, will be inquisitive. They will want to know why you had the operation and what has happened to you. Honest and simple explanations are both important and in the long run the basis of good relationships with them. |
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| The fact that you have had to have an operation resulting in a stoma may make you feel angry and hurt. You may feel you have been cheated. Crying will help you and your family come through the anger and the hurt. You will feel better if you do bring these feelings out into the open and cry rather than if you just worry about them. |
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| Such strong and intense emotions should not be bottled up — get them out into the open, talk about them, discuss them with your family and this will help you work through your feelings. |
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| RELATIVES AND FRIENDS |
| Aside from the people who live with you, other relatives, friends and neighbours will also be concerned about you. There is no need to go into as much detail with these people. However, you have to be prepared for the inevitable questions. If you want to, explain that you have had a serious illness which had become a threat to your life. As a consequence you had a major operation and you now wear a surgical appliance. With an explanation like that, there are very few other questions that can be asked unless you yourself want to go into more detail. If people see that you have adopted a straightforward attitude, they will very likely take their cue from you. |
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| Actually, the need for going into even this much detail soon passes. As the weeks and months go by, you will meet new people and make new friends who will not have known you before your operation and who will not know and do not have to know anything about it. It is a bad idea years later to be going on and on about it to anyone who will listen. Frankly, most people get bored very quickly when other people talk about their operations. |
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| One time when you will have to think about giving a full explanation is if you are unattached and meet someone and you are contemplating marriage or a sexual relationship. In either case, your stoma will not remain invisible and you will have to be prepared to talk about it (a separate pamphlet is available in this series dealing with sex). |
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| BACK TO WORK |
| For many people who have stomas it is usually not very long before they can start thinking about going back to work. It varies as to how long it takes from person to person. This is because the severity of the disease, the reason for your surgery, any post-operative complications, your age and the type of job you do, all affect the speed with which you can get back to work and vary enormously from patient to patient. Talk to your doctor about this. There are, however, some important things to remember. Don't rush back to work. Take your time. Going back before you are really ready is likely to cause more problems in the long run. Think of the return to work as a series of steps to be taken one at a time. |
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| Step One - being able to handle you appliance without assistance. |
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| Step Two - being able to change your appliance without too much difficulty. |
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| Step Three - make sure you have enough energy to do a day's work. |
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| Step Four - make sure you feel comfortable about travelling to work. |
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| Step Five - making sure you know what to do if your appliance leaks and needs to be replaced in an emergency. |
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| There are one or two other precautions you can take at first which will help your peace of mind. Always carry a change of appliance with you, in the car or in your handbag and keep a change of appliance in your desk drawer or locker at work. It is not a bad idea to have a change of underclothes and top clothes at work as well, just in case you do have a leak. Have soap, towel and tissues available too. |
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| Tiredness can be a real problem, even months after your operation. If you can start back at work gradually, say a couple of mornings a week at first, before going back full time, that can be very helpful. Unfortunately it is not always possible to do this in all jobs. |
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| Some people worry about whether their stoma will interfere with their work. If you do a job that involves sitting down at a desk all day, your stoma and appliance will present you with no problems, although some stoma patients have rather sore or tender bottoms for a good while after their operation. The solution here is simple, make sure you have a comfortable chair or a cushion to sit on. These problems with the 'perineal wound' to give it its proper name, usually disappears after a few months. If it doesn't, consult your doctor. If you do a job in which you stand on your feet all day, the appliance and stoma will present you with few problems, although you will certainly feel quite tired when you first start back. Where stomas can be a bit of a nuisance is in the jobs which involve a lot of bending and lifting or working in confined spaces. Lifting very heavy weights should be avoided for the first twelve months or so after going back to work, so you don't put undue strain on your healing body. Thereafter, always follow safe lifting practice i.e. lift with a straight back and by bending your legs not your spine. Avoid carrying heavy objects against your stoma - these can damage it. Don't be careless, it took your surgeon a lot of time and skill to make your stoma and although stomas can be repaired, who wants to undergo yet more surgery? |
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| As far as jobs which involve a lot of bending and stretching are concerned, two useful things can help. Wear an appliance that can be attached to a belt while you are working. This gives added security. Wear loose fitting clothing. At work, avoid belts and tight trousers. |
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| If your job is a fairly active one, a common problem is sweating at the area where the appliance is attached to the skin. There is not very much that can be done about this and it is particularly annoying because the sweatiness can reduce the effectiveness of the adhesive holding the appliance to your skin. You therefore have to be prepared to change your appliance more frequently in these circumstances and using a skin barrier lotion or a skin wipe helps as well. This tends to stop the irritation. |
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| A NEW JOB? |
| If you have to apply for or want to change jobs after your operation, it is quite likely that you will be asked something about your medical history. The golden rule is that you must be honest. What you should do is indicate on the application form the name of the disease you had, the approximate dates you had it and the fact that an operation was done, so someone who had ulcerative colitis might write, for example: |
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| Ulcerative Colitis 1992 - 1998 (total colectomy and ilestomy done 1998 - disease cured by surgery.) |
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| As you may not know the name of the disease you had or of the operation you had, it is a good idea to ask your doctor for the details so you can remember them if asked. |
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| You may also have to indicate on an application form that you wear an appliance or surgical aid permanently. It is usually a good idea to put on the form that if the employer needs further information about the state of your health, they should contact your family doctor or surgeon. Keep a note of these names and addresses. |
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| If you are back to perfect health and many stoma patients are, say so in your application; and if you get an interview and you are asked, say so then as well. However, don't go on and on about your operation at the interview, the prospective employer will not be that interested. Only discuss it if you are asked about it directly. |
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| Apart from the people who will see your job application form, no one else in the new company or organisation needs to know anything about your stoma. You certainly don't have to tell your new workmates unless you really want to. They are unlikely to know you have been ill, so don't bother. It is, however, important to disclose the information about your illness and your stoma at the time of application, since employers tend to take a dim view of people who hide the truth on job application forms and in some cases, is this is found out, it can lead to dismissal and even prosecution. You are very unlikely to be discriminated against because of your stoma and even if you are, who would want to work for an organisation that discriminated against people in that way? Importantly, if you lose your job because of your stoma, consult the voluntary organisations (addresses below), who will be able to offer advice and assistance. |
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| CONCLUSION |
| Don't expect your new stoma to solve all your problems. If, before your operation relationships were difficult or you were unhappy with your job or where you lived, then having the operation will not solve these problems for you. However, having a stoma may give you the energy and determination to deal with these other problems in you life. Remember that for everyone, stoma patients as well as everybody else, life is hard some of the time and it involves coming to terms with difficulties and problems. Everyone has to cope with these. Having a stoma is one of those things that has to be dealt with. It is not easy, but with patience, perseverance and a sense of realism it can be coped with. Nature's way is undoubtedly best, but a stoma can be a very good second best which can help you enhance your lifestyle. |
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| USEFUL ADDRESSES |
Hollister Limited
Rectory Court
42 Broad Street
Wokingham
Berkshire
RG40 1AB
Telephone: 0118 9895000
Advisory Service: (FREEPHONE) 0800 521377
Website: www.hollister.co.uk
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Hollister Limited
Belgard Road
Tallaght
Dublin 24
Ireland
Telephone: 00 353 14041680
Advisory Service: (FREEPHONE) 1800 503400
Website: www.hollister.co.uk
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British Colostomy Association
15 Station Road
Reading
Berkshire
RG1 1LG
Telephone: (FREEPHONE) 0800 3284257
Website: www.bcass.org.uk
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The Ileostomy Association of Great Britain and Ireland
Peverill House
1-5 Mill Road
Ballyclare
BT39 9DR
Telephone: (FREEPHONE) 0800 0184724
Website: www.ileostomypouch.demon.co.uk
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Urostomy Association
Buckland
Beaumont Park
Danbury
Essex
CM3 4DE
Telephone: 01245 224294
Website: www.uagbi.org
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NASPCS - Association for Support of Parents of Children with Stomas
51 Anderson Drive
Valley View Park
Darvel
Ayrshire
KA17 0DE
Telephone: 01560 322024
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National Association for Colitis and Crohn's Disease
4 Beaumont House
Sutton Road
St Albans
Hertshire
AL1 5HH
Telephone: 0845 1302233
Website: www.nacc.org.uk
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| SWIMWEAR & LEISUREWEAR SUPPLIERS |
Chums Limited
Caddick Road
Knowsley Industrial Park South
Prescot
Merseyside
L34 4AB
Telephone: 0151 548 8088
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Respond Plus Limited
7 Gauntley Court
Ward Street
Nottingham
NG7 5HD
Telephone: (FREEPHONE) 0800 220300
Website: www.respondplus.co.uk
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Ostomart Ltd
10 Leofric Square
Peterborough
Cambridgeshire
PE1 5TU
Telephone: 0845 757 3023
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