Impact of diagnosis on your sexual self

Initial reactions can vary from shock and denial to anger, rage and despair. As with any major impact on our lives, it takes time to absorb and accept the diagnosis. Whatever response we have is normal for us but the one thing that might help us, is to express what we are feeling, and we do not often do this. The reasons might be to protect someone we love from the burden of our fears or to stop making it so real by talking about it.

However, it is often only when we hear ourselves talking that we come to understand the emotions and concerns that we are going through. These emotions need to be met and heard no matter how difficult this might seem. We get comfort and solace from the love and support of others and only then can we come to be more practical and rational in our approach to a diagnosis of IBD.

It takes courage to lean on others but if you take the opportunity to do this, you will both deepen all your relationships and build your own self-worth (you have to believe you are worth it to ask for support).

You have a right to live and engage fully in the world, to laugh, socialise and connect; to have sex and enjoyment and get pleasure from your body. However, you may need to incorporate a sense of loss as something that might accompany your journey.

Impact of chronic illness on self, partner, family and friends

One of the biggest difficulties of having a chronic illness is the view you and others can take that you are fragile and delicate.

While this may be true, particularly in the early days of the illness, this perspective might mean that you do not take enough risks for yourself or demand enough bodily pleasure for yourself. It can feel like your body is a battleground and it can become the focus of medical and surgical attention and so you become more removed from its capacity for pleasure and delight.

Your friends and family might make less demands on you and over time, you too begin to see ourself as vulnerable and this can have the effect of decreasing your self esteem and eroding your positive body image.

In order to challenge this and get more sex and connection in your life, you may have to tackle your attitude and focus on what gives your body pleasure.

Pleasure and desire

Desire is a sign that you are alive and if it surfaces, it means that your body has decided that it needs that desire satisfied. It pushes you to take a risk, to touch and take pleasure in another's body and allow them access to yours. Sex is about pleasure, but we often find we are more focused on performance i.e. are we reaching the expected result in the right amount of time.

It is not an exam, but we often need to retrain our bodies to expect pleasure and not judgment or criticism. Often the parts of the body most associated with pleasure are the same places that carry the scars of IBD (both emotional and physical), and so we need to work with our bodies to re-learn that they can be sources of delight.

One easy way of identifying areas needing attention is to do a Pie of Desire. Draw a circle and on the left write down all the things that have to be present for you to experience desire and then put these into the pie proportionally. This will show you what areas are already working and what needs your attention.

The difficulties with sex is often the fear and worry of being unattractive or of embarrassment of having an illness associated with passing stools or blood from the sexual area of the body. The result is often to avoid sex and the excuse is that of exhaustion (a very real problem) or pain (another very real problem). Luckily, desire is so strong that it pushes us through these barriers and the next need is to stop commenting on ourselves and focus totally and delightfully on the other body.

Gradual sensuality exercises is a great way to begin the road to pleasure - it helps if you have another body to play with! Exercises are described on page 5

Starting a relationship with IBD:

It is normal to feel fearful or pessimistic, but this will not help with taking the risk of getting into a relationship. Confidence is the single most attractive quality in a person and to grow this in ourselves we simply need to get rid of the blocks: these are mostly critical thoughts and ideas we have about ourselves. If you can see the blocks operating, you can tackle them by dropping the thoughts and focusing outwards, hopefully on someone you desire.

Wait until you find someone worthy of your attention and then act fast. The longer we procrastinate the less chance there is of anything happening. After a number of dates, where you establish that attraction is bubbling, you should speak about your IBD. The earlier the conversation happens, the less anxiety you will suffer and there will be more openness and trust built in the relationship. If you have the courage to be honest, you will create intimacy, and this is the goal.

Being intimate with IBD

Luckily desire is stronger than resistance and shame but even with a very strong desire, there can be blocks to intimacy. These can include tiredness, fear of bowel movements during sex, fear of pain, fear of flatulence and all the anxieties and worries can become blocks. The constant vigilance on the body's vulnerability can be the overriding focus and so seeing the body as a sexual vehicle will need effort and time. Be good to yourself and only consider sex when you are up for it. Your partner will be delighted that you are enjoying yourself and they won't have to worry that they are have pressured you.

Consider not having intercourse for a while and focus instead on other parts of the body enjoying pleasure. Be up front - tell your partner how your feel about your body and sex and so the intimacy will begin.

How to talk to your partner

The best way to begin a conversation about sex and intimacy is to ask your partner what they would like; then ask them what they think you'd like and correct them! Both of you complete a 'pie of desire' and compare notes. Create cards (maybe 6) of things you'd both like to do in an intimate way for example massage, oils, joint showers, feathers, ice dance, silky underwear, erotic stories etc. Then pick one from the pack and have a go.

Communication happens in all kind of ways but fear stops it, so overcome this by taking a chance that the other person is worth it. If your mind wanders or becomes critical, refocus it by connecting to touch or any of the senses. Sometimes a partner will be over-protective (through fear of hurting you so give them permission to have a go and tell them you will stop them if you need to.

Sex and stoma bags

Whatever is practical and pleasurable, you should do. We have an idea of sex as spontaneous, but it is better when it is prepared for and anticipated, so plan ahead.

If it makes you feel more attractive, cover the bag with a smart T shirt or silky top - there are many suppliers of specialist underwear that can make you feel desirable so get shopping.

Use candles, music, lubricant and warmth to create an atmosphere of romance and pleasure.

Plan for interruptions e.g. 'if I have to run to the loo, I want you to focus on this fantasy....

Come back and be told about it and make this part of the whole experience.

Focus on what is pleasurable and not on what is missing, it is not a race.

If worry or fear comes into your mind, lick your favourite part of the other person and you will soon forget! With time and experience, your body will grow to expect pleasure and be a source of satisfaction rather than anxiety.

Gradual sensualisation exercises:

Sensate focus is a sex therapy technique introduced by the Masters and Johnson team.

It works by refocusing the participants on their own sensory perceptions and sensuality, instead of goal-oriented behaviour focused on performance sex. Sensate focus has been used to treat problems with body image, erectile dysfunction, orgasm disorders, and lack of sexual arousal. These exercises re-train the body to become a source of pleasure and they challenge body criticism and patterns of avoidance and distain.


The publication of this patient information was made possible through an educational grant by Tillotts Pharma Limited. Written by Trish Murphy B.Soc.Sc. M.A., M.Soc.Sc, (Psychotherapy)

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