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| Involving Those Close to You In the Journey You Will Make Following Your Operation |
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| Up Close and Personal |
| Relatively Speaking – A Family Affair |
| Other relatives and friends |
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| Up Close and Personal |
| Relationships with loved ones, friends and colleagues are a very important part of life. Many people worry that having a stoma will spoil these relationships. |
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| The operation can in some cases give relief from symptoms. For example, frequent trips to the toilet may be reduced. However, a number of new challenges will have to be faced, particularly in the first few weeks and months after the operation. Some will have been quite weak before surgery, others may not. It can take quite a while to get back to feeling fit again. So don't expect to be back to 'normal' straight away once 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 of having a stoma. When people first get home from the hospital, some find they are thinking and worrying about their stoma all the time and sometimes become concerned that they will always feel like this. Don't panic. For most, this is just a passing phase. But it's worth remembering that it usually takes some months before these feelings pass and try not to worry about this. It's really quite normal. |
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| In these first few weeks and months, there's a reasonably steep learning curve about a few simple things like the stoma itself and how to use the products. This does not always mean having to deal with these things on your own. The stoma care nurse can help, and support is also available from a stoma association. The nurse should be able to provide a list of contacts — if in doubt ask. Questions are only natural and to be expected. Don't forget to ask for help from relatives and friends as well. |
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| This is an important stage because gaining control of not only products, but some simple tasks is the foundation of a good lifestyle. Getting used to having a stoma can sometimes be difficult though. It's a bit like riding a bike or driving a car — easy when you know how, but sometimes extremely frustrating when learning. Quite possibly there will be 'accidents' and leakages in these early days. This happens to nearly everyone 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. Leaks happen less and less frequently, and sometimes not at all, once you've learned to manage the stoma and the products. |
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| Don't forget that there are choices about what sort of products to use. There are many different types out there from many different manufacturers. Sometimes shopping around will provide the best result. There are some limitations to bear in mind, though. |
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| With an ileostomy, an ileostomy pouch (usually a drainable pouch) is best. With a urostomy, a urostomy pouch, one with a tap, is used. With a colostomy, a colostomy pouch will be used. This may be either a drainable or closed pouch depending on individual needs or preferences. For each type of stoma, there's a wide range of pouches and accessories made by different manufacturers. Seek the advice of a stoma care nurse, who will always be ready to help, or talk to others using these products for some shared experiences. Remember what works for one person does not mean it works for another. |
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| Relatively Speaking – A Family Affair |
| Stoma surgery is major and is only done for serious or life-threatening illnesses — or occasionally following a serious injury. For some of us, our family will know or have guessed that there was a serious problem. They will have been worried and will have journeyed through the illness and operation with us. For others, the need for an operation can be a real shock to all concerned. |
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| One of the first things to consider talking about with close family — particularly those sharing the same home — is that although the surgery is over, recovery takes time, and it can be a while before relative normality is restored. Some allowances will need to be made for this. Remember though, there's no need for the stoma to compromise your life. Now is the time to commence the journey on the road to a better life. Take it one step at a time and let family know your goals. |
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| You will need to spend a lot of time, initially, learning how to change the pouches. Select a time when there will peace and quiet in the bathroom or toilet. Make sure that everyone in the home knows that these areas may be busy for a certain period, and that this is extremely important. Knowing the right time to change the pouches will take a little practice. Ideally, find a time when the stoma is not overactive — such as first thing in the morning before eating or drinking. Some of us wait until after breakfast to change the pouch because the stoma becomes active and then not so active for the remainder of the day. There is no 'best' time for everyone. |
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| When changing pouches, access is needed to clean warm water to wash the skin around the stoma. It's a good idea to find a space to keep all the necessary bits and pieces (spare pouches, cloths, etc.) as they can take up a reasonable amount of room. It's not always a good idea to keep them stored in the bathroom. It can be rather damp and not always accessible with larger family needs. |
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| The stoma is now a part of your life. It also has, in many cases, become part of a family's or partner's life too. Some couples find it a good idea if they both learn to change the pouch in case there's an emergency. This might happen with a hand injury, for example. However, you need to be self-reliant if at all possible. |
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| If children are at home, they too are part of the family who will also need to live with the stoma. How much or how little they are told and whether or not you show the stoma to them really depends on how the family interacted before surgery and also how old the children are. All children have questions and will more than likely want to ask them. They will want to know the reason for the operation and what has happened. Honest and simple explanations are both important. |
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| Having an operation resulting in a stoma can lead to feelings of anger and hurt or even a feeling of having been cheated. Crying may help with the family to help work through this anger and hurt. Some people express their concerns by talking to friends, family or others who have had similar experiences. Some find reading and learning about their situation works best for them without the need to discuss it with anyone else. There's no one answer as every person can react differently. |
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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 family or friends. You may want to seek advice from a support group or a professional. |
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| Again, the stoma care nurse may be the first person with which to discuss these issues and provide you with the information you need. |
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| Other relatives and friends |
| Not-so-close relatives, friends and neighbors also will be concerned about how things are going. There's no need to go into a lot of detail with these people. However, be prepared for the inevitable questions. If it feels right to do so, explain that a serious illness required major surgery with the end result being that you now have to wear a pouch. With an explanation like that, there are few other questions that can be asked unless very specific details are requested. If possible, adopt a straightforward attitude and people will very likely take their cues from this behavior and not over dramatize the situation. |
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| Actually, the need for going into any detail at all soon passes. As the weeks and months go by, it's possible to meet new people and make new friends who will not know anything about the operation or the stoma, and frankly do not need to know. |
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| However, one time to think seriously about giving a full up-front explanation is if you are single and meeting someone with the idea of marriage or a sexual relationship. In either case, the stoma will not remain invisible, so be prepared to talk about it openly and honestly. |
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