Hollister - ANZ: Ostomy Care

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	Ostomy Care

The following information is about the way in which love and sex fit into your lifestyle now that you have a stoma. It is written both for people with stomas (or about to have surgery) and for their partners. It provides some general advice about sex and related matters for people who have had stoma surgery, which may help them to return to a lifestyle which suits them and their partner and in which sex can play an appropriate part.

Please note: Some parts of the following information are sexually explicit.

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Some Typical Worries

Relationships And Self Confidence

When facing the prospect of stoma surgery or when lying in hospital looking at their new appliance, many ostomates experience a sense of loneliness and intense fear of rejection. It is not odd to feel worried in this situation. Likewise many people with an ostomy wonder if they will be able to have children. They wonder how they will physically make love while wearing an appliance.

The answers to these questions depend on a number of things; your illness, the type of operation you have had, your age, your gender, your attitude and also the nature of the type of relationships you have had with others. Many ostomates have better sex lives after their operations. Many have children and have fulfilled and happy relationships.

Initially it is worth putting the whole thing into perspective. You should remember that there is no such thing as an average sex life that everyone should aim for. Sex is something that is particular to individual relationships and lifestyles. You should aim to develop, after your surgery, a way of living with your partner that suits you both. Because sex occurs within relationships, the nature of your sex life tends to reflect the nature of your relationships.

It is the case that a great many people who have never been ill, never had surgery and certainly don't have a stoma, experience sexual difficulties and problems. This is important to remember, because you must not assume that people experience sexual difficulties following surgery do so because of surgery. Of course, as we will show below there are physical reasons why people may experience sex problems after their operation. But don't forget that some people who have difficulties and problems after surgery, had difficulties and problems before surgery. The fact that they have problems now is nothing to do with the stoma, although the stoma becomes a scapegoat for the problems. It is for this reason that the following information focuses as much on relationships as on the physical side of sex.

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RELATIONSHIPS AND SELF CONFIDENCE

When you are fully clothed, no one need know that you have an ileostomy, colostomy or urostomy. The fact of your operation and the existence of your stoma is a secret which need not be divulged to anybody else — anybody else, that is, until you have to take your clothes off to make love! With no clothes on the bag can hardly be ignored. Many people with stomas wonder what on earth they should say to a partner in these circumstances. Partners of long standing will have shared the experience of illness and surgery with you and while the existence of the appliance will not be a surprise, the first time you go to bed after surgery, even if you don't intend to make love, will be an occasion when you will have to acknowledge its existence. For a couple in a loving caring relationship, the novelty of the appliance soon wears off and it can be largely ignored. The previous sharing of experience is not possible when an ostomate has a new partner who is unaware of the earlier illness. It is wise to explain to a potential new partner that you have an appliance. You should rehearse to yourself a short explanation before you get into the situation. Something along the lines that you had a serious illness which has had to be treated surgically. The result is that you wear an appliance. We do not suggest that you whisper this tenderly in your partner's ear in a moment of passion!

On the other hand, if a relationship is becoming serious, it is worth discussing your situation before the relationship gets physical. Of course, not all sexual relationships occur after you have had time to get to know someone well enough to discuss such matters. Here you will just have to take your chance, although we suspect that if you are having an active sex life of this type you need little advice from here.

Incidentally, if you are telling a prospective partner about your stoma, you must be prepared for the fact that you might be rejected. This is always an unpleasant experience; the only consolation is that people who don't have stomas get rejected as well. It is also true that if you get rejected it is not necessarily because of your stoma. In any event if someone doesn't like you with a stoma it is unlikely that the relationship would have worked anyway.

In the final analysis you have a choice after your operation in all your relationships. This includes sexual relationships with long standing partners or new partners and indeed in non-sexual relationships with friends, relatives and workmates. You can either present yourself to the world as a sick person or as a well person. If you think of yourself as a sick person and play that role, you will give people the impression that the only thing that matters about you is your stoma. If you do this, other people will very likely respond by treating you like an invalid. On the other hand, you can present yourself to others as someone who was ill and now has a stoma which is part, but not the only part, of your life. There are other aspects of you that are much more important that your stoma; your job, your family, your good looks, your wit, your charm or whatever. Others will take their cue from you. If you are able to show that while you recognise that you have your stoma, it is not important in terms of the way you want to live your life, then that is what will most likely occur. If you want to be an invalid and you want to be treated by other people as an invalid, you will never enjoy a good sex life.

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YOU AND YOUR PARTNER

If you are in a long-standing relationship, your partner should be involved at the earliest opportunity when you are informed that you need surgery. They will be very anxious and of course they too may be concerned about sexual matters. It is a good idea for your partner to talk to the surgeon and the Stomal Therapy Nurse on their own. They need reassuring as much as you do.

Many people in relationships say that they found that it helped if their partner was present when their appliance was changed while they were in hospital. This gives the partner the opportunity to see the stoma. Many non-ostomates say that seeing the stoma in the flesh was much less awful than they had imagined.

Your partner shares your life and probably cares for you very much. They need help too, as they can help you. Many couples say that sharing this experience brings them closer together.

Recovery from a major operation takes time. Some patients who have stoma surgery will have been very debilitated before their operation and this will also affect the recovery process. Do not therefore expect to resume sexual relationships as soon as you get home from hospital.

There is no set time when to resume sexual relationships after surgery. One rule of thumb is that if you can walk half a mile unaided, without becoming breathless or being in pain, you are probably able to resume full sexual relations again. But be gentle at first. Don't try to break records. Before they resume full intercourse some people try masturbation or asking their partner to do this for them. This helps build confidence, is pleasurable and will help put at rest some of the fears you may have about whether you still can have sex. If you find the idea of masturbation morally wrong or repulsive don't do it. However, many couples find it a good place to begin.

The first few times you make love you will find it a good idea to check to make sure that the appliance is secure. More to the point, never try to make love with a full or half full appliance. Always empty it before you begin.

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SEXUAL INTERCOURSE

How do people with stomas have sex? The answer is that they in exactly the same way as people without stomas. All the conventional sexual positions are usually possible for ostomates who want to have sex. It is a matter of taste and a matter of what you are comfortable with. Remember that being tender, loving and kissing and touching are all part of making love after your operation. You will need to take it gently and the tenderness and friendliness that are part of the pleasure of sex is where you should begin.

The simplest problem facing the ostomate is of the appliance impeding easy movement and getting in the way. If the appliance is emptied before intercourse it can be folded up and trapped down with some tape. Keep a nice cotton cover over the appliance at all times as wearing a cover stops it rubbing on yours and your partners skin. If you use an opaque bag it will hide the contents.

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CONTRACEPTION

Contraception or family planning, means taking steps to prevent conception. If a person with a stoma is sexually active they should use contraception. The only exceptions would be if the person was infertile already, because of their illness or a previous disease or because they have had a vasectomy or been sterilised. Otherwise conception may occur normally. Conception is wonderful if that is what a couple want and many become happy parents. However, it is wise to practice contraception in all other circumstances. The methods of using a condom, a barrier or intrauterine device, the Pill or an injection are all possible. However, there is some evidence that the contraceptive effect of the pill may pass through the digestive system very quickly without being absorbed into the body. In these circumstances the protection of the pill is lost. Do talk to your G.P. or your family planning clinic about this. Male ostomates may have vasectomies in the same way as other men, as a permanent means of family planning.

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THE MALE OSTOMATE

The greatest difficulty and the most common one, which men are likely to encounter post-operatively is impotence. This is the inability to get or sustain an erection long enough to ejaculate (to come). Impotence is a highly complex phenomenon and may occur in men of all ages and can occur for many reasons which have nothing to do with surgery directly. Impotence is not a problem unique to men with stomas.

Sometimes impotence occurs because the man believes or comes to believe that he will be unable to have an erection or come to climax. It then becomes a vicious cycle of failure, loss of belief and continued failure. The process is usually made worse by the fact that the failure in the act of sex causes tension between the couple. The woman may not feel frustrated, but may feel that her partner no longer finds her attractive and that is why he can't or wont make love to her. She feels rejected and the whole relationship takes a downward turn.

There are a number of reasons why a man may become impotent and some have very little directly to do with surgery. If impotence is your problem you should think about a number of things because sometimes some simple changes in lifestyle can help. Do you try to make love when you are very tired? Are you using drugs and/or alcohol in a way that is depressing your sex drive? Are you trying too hard to have sex, rather that treating it as a natural ordinary thing to do? Be sensible. Don't try to do too much and see if going to bed earlier when you are not so tired or drinking less, will help. If these simple remedies don't assist, then it is worth seeking a medical opinion. But remember, gentleness, tenderness and being relaxed, as well as having a positive self image, is essential to a happy and enjoyable sex life.

In some cases the causes of impotence are physical. For male stoma patients there is a risk that the nerves governing erection and ejaculation will be damaged in surgery. Erection comes about because of stimuli travelling along the parasympathetic nerve pathways. These are fibres which run close to the rectum. If these fibres are damaged in surgery the ability to have an erection will be wholly or partially lost. Ejaculation is dependent on the sympathetic nervous system. These pathways are vulnerable in surgery too. Impotence is more usual for men having a colostomy than an ileostomy because there is less damage to the tissues in the latter and therefore less risk to the nerve pathways. Surgery for bowel cancer is extensive and therefore more damaging. According to the available data on this topic, age seems to be an important factor, with older men having more problems. Whether the cause if the fact that older men may have less interest in sex anyway or whether it is because older men are more likely to have a colostomy than ileostomy (because bowel cancer is more common in older age groups) or some mixture of these factors, is far from clear. It is also worth remembering that it can take up to two years before it it clear whether you are permanently impotent or whether sexual function will come back. Temporary impotence is not unusual following stoma surgery, so don't think that all is lost if, within a couple of months after surgery, you have not begun to have sexual relations. The healing process sometimes takes a long time.

Even in the case of permanent impotence all is not lost. Over the last few years medical science has developed surgical techniques that can help some impotent men, including men with stomas. This type of surgery is highly specialised. In the first instance you should talk to your Stomal Therapy Nurse, your Surgeon or your G.P. about this type of approach if you think it may be for you.

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THE FEMALE OSTOMATE

Having a stoma is not in itself a bar to having sex and having children. Normal birth with normal vaginal delivery is quite feasible and quite common. This is, of course, dependent on the reproductive organs being undamaged and working normally. Having a stoma as such will have no effect on these; the pre-existing disease however might.

As far as the mechanics of sexual intercourse are concerned, there are several typical problems which the female stoma patient might experience. The first of these relates to the way the perineal wound heals. (The wound left when the rectum is removed). It sometimes remains tender for a considerable time following surgery and thus sexual intercourse can be painful. A second problem is that the space left when the colon is removed sometimes allows the uterus to shift backwards. This can cause pain during intercourse. Thirdly, some female ostomates find that there is a decrease in feeling and sensitivity of the clitoris. This may be due to the fact that the nerve pathways to the clitoris are impaired in surgery. Another frequent problem is vaginal dryness making intercourse difficult and uncomfortable. Finally penetration may be painful and uncomfortable, simply because of the scarring of the tissues following removal of the colon or bladder.

There are a number of solutions. For dryness a lubricating jelly can be used. If your partner wears a condom, which is itself lubricated, this may help. Surgical reconstruction of the perineal wound, particularly if sinuses are present, can also assist you. Trying different sexual positions is also a good idea if penetration is painful. If the rectum has been removed the missionary position (the female laying on her back with her partner on top of her) may be uncomfortable. One solution is for the man to enter the vagina from behind, the female kneeling with her knees apart with the man kneeling behind is probably the easiest way to do this.

The other alternative is for the woman to sit astride her partner who lays on his back while she guides his penis into her vagina.

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HOMOSEXUALITY

For gay men and women, having a stoma is not in itself any more or less of a problem than for heterosexuals. Other things being equal a gay man will be able to have an erection and ejaculate. The big problem facing the gay man is if he has used his rectum as a receptive sex organ. The rectum may be removed in surgery, although this depends upon the operative procedure and the type and extent of the disease and consequent risk to the life of the patient. Given that the decision to remove the rectum is to some extent a matter of clinical judgement, it is important for a gay man to discuss the issue with the surgeon pre-operatively to explore the possibility of keeping the rectum in place and any risks that might arise from doing so. One important word of warning, the stoma must never be used as a point of entry for sex. To do this is to risk damaging it and will almost inevitable result in having to have more surgery.

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CONCLUSION

The information contained here has dealt with some of the problems and difficulties encountered by stoma patients in relation to sex. We have examined the issues in general terms because to try an detail all the different permutations from all the possible diseases, the three major types of stoma, the different types of relationships people have, people's different ages and sexual experiences would lead to a very long and complicated book. Not only that, but given the personal nature of sex, it is perhaps unwise to try to cover all the possibilities because variations are so great.

In the end the best advice is to keep things in perspective. Sex can be fun, sex can be great; but it is only part of life. It is not the be all and end all of living. Many people live very happily without it. Being unable to make love may be upsetting, disturbing and frustrating. On the other hand you are a person with all sorts of traits and characteristics, of talents and interests, with friends and relatives. Being unable to have sex is not the ultimate disaster that can befall you, even though sometimes it might seem that way.