Body image, and the question of telling people

It is quite common for new ileostomists to worry that everyone will find out, because they think they look different. There are broadly two ways to deal with it: the practical matter of appliances and services available, and doing something about how you view yourself. The second is where most of the work is.

The question worth asking

Think of all the people you see — at work, friends, in shops. Do you know someone who has an ileostomy, colostomy or urostomy? Do you? The chances are that you do know someone who wears a bag, yet you do not know they wear one, because how would you? You are not inspecting everyone to see if they are an ileostomist, any more than others will be looking at you.

The starting point, though, is the opposite of denial: do not pretend your ileostomy and bag are not there. They are — it is a fact. But it is important to get this into perspective. It is a small part of your life and who you are.

Self-perception

Possibly the biggest factor affecting how others see you is the way you see yourself. Plenty of people without ileostomies lack self-confidence and are too ready to stress their perceived faults rather than their many good points. Having an ileostomy can be taken as an invitation for those characteristics to be exaggerated — you might think the ileostomy is the most important thing about you, and see it as meaning you are less, rather than different.

New relationships

People entering a new relationship often ask: how will I tell them, when, what will they think? Most in this situation have found their worries unfounded, and that the person who truly cares for them accepts all of them as they are. The converse is just as plain: the person whose view of you changes on discovering you have an ileostomy may not be the person to embark on a long-term relationship with.

Where that is not enough, counselling — not necessarily specialising in altered body image — is an opportunity to talk over the non-mechanical aspects of living with an ileostomy; the British Association for Counselling and Psychotherapy lists local services. And an observation that seems to surprise people: as time goes by you may find yourself telling more and more people, and once you have accepted it yourself, you may find you are helping them with their embarrassment.

The practical half

The feelings do not arrive in a vacuum, and the first suggested route out is the equipment itself: there is a wide range of ostomy products and associated items — deodorants, swimwear — backed up by advice from manufacturers’ representatives, and full details can be obtained from your stoma care nurse or the quarterly journal of the Ileostomy & Internal Pouch Association.

The second is other people who have done this. Through a local member organisation of the Ileostomy & Internal Pouch Association anyone can make contact with other ileostomists and find out what they do — and what you tend to realise from that: there are no constraints on where you go, who you meet, how you travel, what pursuits you take up, how you look, what you wear or what you eat. There is really no need for your appearance or behaviour to change at all.

The thread running through all of it is that starting point: it is a small part of your life and who you are. Everything else — the equipment, the other people, the counselling, the timeline — is offered as a way of getting to that, rather than as something to feel instead.