Daily living with a stoma

People with colostomies or ileostomies can eat the same foods, wear the same clothes, travel, and participate in the same sports and physical activities as other people. Many people found they had to make minor adjustments to their lifestyles but were able to carry on as normal once they had.

Most people said that their diet was largely the same as it had been before their surgery and that they could eat most things. However, many people found that having had bowel surgery, certain foods now upset their digestion and caused a problem with their stoma. Some people had been advised to avoid things like nuts, sweetcorn and sultanas, which digest slowly and might block the stoma. Others chose foods that would help them avoid diarrhoea or constipation, which can be chronic problems for people who have had bowel (colorectal) cancer.

For many, discovering what foods they had to avoid was a matter of trial and error and these were different for each person. One man describes the foods he avoids and how you can improve your tolerance to things that upset you. Another explains how certain foods and fizzy drinks cause his stoma to balloon:

Explains how he learned what foods caused problems with his stoma.

Age at interview 87

Gender Male

Age at diagnosis 62

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What kinds of things can’t you eat?

Things like very pippy fruit is one of the things for example, pippy fruit is one but things like, fruit with pips as well, apricots, prunes and things like that.

And it wasn’t until much later that I discovered it was possible to accustom ones digestion to them by going right back to them in a very, very small quantity, like one prune, for example, for a week and then having two and then three and I can then stomach quite a bit more.

And you can do that with almost, not every fruit but almost any fruit as far as I’m aware.

I don’t eat curries, I never liked them before anyway so I can’t you know vouch for foods of that nature but I always liked my food reasonably plain, I don’t like hotted up sauces that go with it too much, a little of them but not much.

And I still find that if I do, you know, take for example with certain fish they do, they do certain sauces. But sometimes garlic for example. Now garlic is all hell to me. I have to be so careful even to be the same room as garlic er that does something to me and I avoid it entirely. I don’t dislike it, I mean I like all these things to eat.

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He discovered that certain foods cause his stoma to balloon.

Age at interview 63

Gender Male

Age at diagnosis 58

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You don’t eat various foods that cause a lot of wind obviously.

For example?

Well beans, brussel sprouts er those sort of things, there are several others I’ve got them listed.

Have they told you not to eat them?

Well you can do, it’s entirely up to you er and also beer, especially lager, if you drink anything like that or fizzy drinks I mean you mustn’t drink too much champagne (laughs). I mean not that I might because what happens you get what they call ballooning you see, Percy, your stoma it blows up like a balloon you see.

Did someone tell you that or did you just, did you learn by error?

Oh I discovered that like you know.

So trial and error?

Yeah I mean the first time he blew up I nearly had, I nearly had kittens you know.

I thought it was going to come off and er and I thought the thing was going to blow off you see and I’ll never forget she was a little Irish nurse and she said “Oh by’Jesus,” she said “I’ll go and get a pin and I’ll prick a little hole in it to let the air out,” and I was “No, no don’t do that,” because I had visions of her sticking a pin in and it exploding like a balloon you see.

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Stoma bags are not visible through clothing and there is nothing unusual about how people with stomas dress. However, the stoma may cause discomfort if it is in an awkward position. One man describes the constant irritation he experiences because of where his stoma is positioned. He also stressed the importance of discussing the siting of your stoma (its position on the body) thoroughly with a stoma nurse before surgery.

Explains how the location of his stoma is wrong in relation to his waistband.

Age at interview 63

Gender Male

Age at diagnosis 58

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Okay well if I can just explain, whether it’s because I’m tall or not depending on where ones stoma is you see your underpants don’t cover your pouch.

Right.

It comes right across the middle of the stoma so I’ve got, these pants that I’ve got on, underpants I’ve got on here a friend of mine brought them back from America because the ones in Britain they haven’t got enough from the crotch to the top so that is just one of the silly little things perhaps that,

So what happens if your underpants are uncomfortable?

Well this is they are uncomfortable you see because they come in the wrong place er it’s just one of those little niggles perhaps but,

And does it hurt?

No it doesn’t hurt but it’s just uncomfortable you see and if only there was somewhere where you could talk to or somewhere where you could get some bigger underpants.

Ideally what it needs is they want to be at least, I think they call it the rise actually from the crotch to the top and whether it’s because I’m tall or not, I’m six foot three you see and so I even got the next door neighbour to try and take the elastic off, put a piece in the middle then put it back on again but it didn’t work you see.

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People with stomas can travel just like anyone else. Some people worried about long journeys especially on airplanes but those who had done it found that it was not a problem. Several people pointed out that travelling with a stoma required some preparation. Careful eating for a few days before a journey and ensuring that stoma supplies are always at hand were the key.

For people who were having difficulty managing their stomas, sports and physical activity could be a problem. One man who had enjoyed country walks with his family before his operation had to give them up while he had his ileostomy because he needed constant access to a toilet. The situation was made easier when he discovered the availability of universal radar keys that are available to anyone with a stoma and which open any disabled toilet in the UK.

For those whose stomas cause no difficulty, sports and physical activity could be an enjoyable part of life. One man who is a keen cyclist was riding 25–30 miles a day with a temporary colostomy at the age of 65.

A man with a permanent ileostomy who skis, scuba dives, and is a master mariner describes how important sport has been in his life:

Describes how he became an accomplished sportsman after his ileostomy.

Age at interview 65

Gender Male

Age at diagnosis 35

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Well a friend of mine decided well you’re gonna get fit now and start to do things so we took up swimming, my wife as well. And one thing led to another, from swimming we took up scuba, snorkelling and from that – to cut a long story short, I took up diving, scuba-diving.

I then took on, I did a commercial diving course and I qualified as a commercial diver although I’ve never done it commercially. I ended up by being a diving instructor for the British Sub-Aqua Club and that gave me great satisfaction to do that.

‘Cause I can do anything, I can play football, I’ve even taken up skiing, I can ski, I, I’m quite a good skier now. And I’ve taken up uh, I’m the cameraman now for the local ski club and when we go skiing I, I’m the one on the slope with the, with the camera. And I’m skiing and I can ski backwards, sideways and do all sorts of things, as long as I’ve got a camera in my hand I can ski anywhere.

The ileostomy does not make any, one difference to me at all.

I mean I look at myself and I say well I’ve been a diver, uh, I’m a master mariner, uh, I can sail anywhere and I can ski anywhere. I couldn’t do that before my operation, and then after me operation look what I can do! I can dive, I can ski and I can sail a boat anywhere in the world. I mean I couldn’t do that before. So it’s probably done me a favour.

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Sexuality and relationships with a stoma

Having a colostomy or ileostomy can profoundly affect your self-image, social confidence, and feelings about your sexuality. While people with stomas can and do have...