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Colorectal Cancer

Feelings about stomas

Dealing with bodily waste in an unusual way, worrying about hygiene or social embarrassment and having a part of your insides sticking out can profoundly affect one's self-image and social confidence. Our usual ways of thinking about cleanliness, adulthood, sexual and gender identity, or even what it means to be 'normal' can seem as if they do not apply when we have a stoma. While many people soon come to feel that having a stoma is simply different rather than abnormal, for others feelings of discomfort persist.

People whose surgery for colorectal cancer did not require them to have a stoma often saw this as a lucky escape. As one woman put it 'There's a lot worse could happen but I must admit that when I didn't have it I could have shouted through the roof.' Many people said that their first conscious act after surgery was to feel around for a stoma bag. 

One or two people expressed no distress at having a stoma but the majority, including those who later adjusted successfully, vividly remembered their fears. Many said their fears were worse than the reality of the situation. One woman agreed that the fear was worse than the reality but still felt she had lost control of her life until she began to practise colonic irrigation.

 

Having known other people with ileostomies helped him feel positive about his own.

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Age at interview: 70
Sex: Male
Age at diagnosis: 68
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The ileostomy didn't worry me at all. I've a mother-in-law who's been an ileostomist for probably 30 years now, and she's well on into old age, well over her 90s now. And she's managed successfully and also I've got a very good friend and neighbour  who has also been an ileostomist and I knew that he was more physically fit with his ileostomy than I was without one. So, I'd no fears about that at all. I was lucky, in that respect, that I had no fears because I knew about them.

If you didn't know anybody who had an ileostomy do you think it would have been a daunting prospect for you?

Yes, yes I think so. I think it would have been simply because in my opinion there is such an attitude towards people who have a stoma and have to wear a bag, for whatever reason it's sort of not accepted socially.

And it's ridiculous, totally and utterly ridiculous that is. You, you know you might as well having an ileostomy is in my opinion less of a stigma than having athlete's foot, and I would put it as simply as that.
 
 

Remembers his early fears about having a colostomy.

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Age at interview: 87
Sex: Male
Age at diagnosis: 62
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The psychological aspect to me anyway was "how the hell am I going to manage this thing when I get out?" because as I walk down the street everybody is going to point to me and say "Look he's got a bag on his belly," and this was actually how I felt about it.

And it took me a couple of weeks of walking around in the street and nobody took the slightest bit of notice of me at all and therefore you know I'd just imagined this.

So it didn't take long to throw that one away and dismiss it because it wasn't so. Everybody is a different person and therefore it has a different psychological effect on anybody I would think.

The only thing is to know what is likely to happen and know that these things will come along and you either can or you can't handle them, that's just the point.

 

Having a colostomy left her constantly anxious about possible accidents and social embarrassment.

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Age at interview: 65
Sex: Female
Age at diagnosis: 49
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I think the worst fear was that I wouldn't be in control of my bowel movements and wearing a bag it could be very embarrassing. I was very aware of wherever I was going and I was, that was one of my worst fears' 'Would I be in control, or would I have an accident or would anything go wrong?'

It wasn't so bad at home but at work, being in meetings so frequently, seeing patients, as well as socially it was very embarrassing and I was very, very aware of that all the time, yes. So while I was determined to live I was experiencing a lot of distress in the first few years, especially the first year.

Was the fear actually worse than the practical reality of managing it?

Yes I think it was, I think the fear was worse. I was always aware of odour or, I just generally felt very self conscious. I'm a person who'd been quite competent and confident in the past and here I was very, very self conscious, very aware of myself, asking my husband "can you smell anything?" you know all the time "can you see anything?" the whole time.

I changed clothes for the first year or two wearing fuller clothes because I was worried that the bag would swell or it took me a while to adapt and accommodate to the change in me.

I couldn't get used to bowel movements coming through the front of the body, it horrified me. But eventually I got used to it. I think when I started irrigating and I felt a sense of control and cleanliness come back into my life, that made a very big difference.
 

Many people described themselves as 'fastidious' or 'meticulous' about personal hygiene and worried that, with a stoma, they would never feel entirely clean. This feeling often subsided as they gained confidence with stoma management and developed a new cleanliness regime. One man describes his initial feelings about his stoma and how he eventually overcame them and learned to deal with it. A woman explains that even after many years her stoma still makes her feel unclean.

 

Describes how he overcame his initial negative feelings about his stoma and developed a new...

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Age at interview: 65
Sex: Male
Age at diagnosis: 64
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I thought to myself, blimey am I going to cope with this I can't, you know, because I'm a very fastidious man and it couldn't have happened to a worse person than me because I'm very fussy, cleanliness is very, very important, but on reflection, sitting back and thinking to myself what alternatives has one got, you've got to cope with it because otherwise there's no other way out.

You never think that you're going to be able to put the appliance on, wash yourself, see to yourself, look at it, do it.

I couldn't look at it, I couldn't look at it and they knew that so my stay in hospital was an extra week because of that situation. But that was difficult.

But after a few times going to the bathroom with the stoma nurse and she put you through a kind of regime. You have to get things prepared, wash, get your appliance ready, get the stoma paste ready, to apply it and all the rest of it, and you go through all this, all of a sudden this becomes a ritual and you start doing it yourself and you become quite amazed and you become quite good at it. So by the time I left the hospital I could handle it.
 
 

After many years she still worries about her stoma.

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Age at interview: 65
Sex: Female
Age at diagnosis: 59
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And how did you feel about having a stoma?

Oh terrible, I still do.

Do you?

Mm I know it might sound silly to someone else but I never feel clean. You know I mean, well I have a bath every morning but I dunno I just don't ever feel, like while there's nothing in it I'm alright but as soon as it works I just feel as though I'm dirty.

Like it's a horrible feeling really I just like and as I say if I'm in company, and it's not so bad now because obviously I basically know what to eat and what not to eat, but at first I didn't and oh the noises it used to make, it used to be horrendous and I used to feel so embarrassed.

Like my niece got married in May and I dreaded it, as much as I was looking forward to it, she's my goddaughter, I was dreading it because I thought I bet this will go wrong, I bet that'll go wrong, I've always got that fear.

While there was little concern about stoma bags being visible under clothing, almost everyone said that one of their greatest fears was offensive smells. There was also widespread concern about the possibility of leaks or other accidents in public. Many people were embarrassed by the noises their stomas made. One man describes his concerns as he tried to carry on with his usual activities.

 

He recalls trying to carry on with normal activities while adjusting to having a stoma.

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Age at interview: 54
Sex: Male
Age at diagnosis: 48
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But my social life was, was very bad because I, I, I had no social confidence. I was afraid of people smelling this stuff. I, obviously if it leaked you could smell it, but I was always concerned that there was a proper fixture and fitting on I made sure it was well adhered and of course I kept myself very clean.

No one ever said to me they could smell anything, no one ever took offence, no one ever said or moved seating if I was sitting somewhere.

And I was also involved in quite a lot of  voluntary organisations, but because of my sickness I had to let quite a few of them go. But I am still involved in, in two or three, and I'm still going to, I started going back to the committee meetings and uh, but there was always a concern about these extraneous noises from this bag, caused by a build-up of gas, and you've no control over it, I was most embarrassed the first time it happened. And of course nobody was gonna turn around and say you know, "Was that you?" or whatever.

Is it quite a loud noise?

Oh yes. Oh yes, very, it's just like someone breaking wind you know, and that, but I, it actually went on longer, if you, if you're breaking wind naturally you tend to try and stop it, this thing you've no control over. How it exudes itself.

Many people disliked having to carry around and consciously dispose of bodily waste but found it particularly distressing when others were or wanted to be involved. Several people found it disturbing to have part of their insides on the outside of their body. One woman quickly learned how to manage her stoma so she could re-establish a sense of privacy. Another woman recalls her feelings about her stoma and how she disliked having other people help her with it.

 

She was anxious to regain a sense of privacy after having a colostomy.

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Age at interview: 47
Sex: Female
Age at diagnosis: 38
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I was absolutely horrified by the stoma initially. And, I couldn't bear the stench of it initially and I didn't want the stoma nurse dealing with me. I wanted very quickly to deal with the stoma myself and, and as much as she said to me that she was well used to it I, I found it too much of an invasion of my privacy for her to be dealing with the stoma and to be dealing with the very unpleasant smell that my body was, was giving off at that, at that stage. You know that my excretion was highly scented.

So you're talking about when the bag was being changed?

Yes.

Not all the time, but when the bag was being changed?

No, no, just purely when the bag was being changed. So I think within one or two days I was dealing with it entirely myself and that initial smell that was in, in the bag very quickly went and I think it was purely because a lot of the system had been lying dormant for a period of time and it was when, see when you have this operation one of the things is that your insides fills with quite a lot of gas.
 
 
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Describes why she found her ileostomy disturbing and didn't want others to help her with it.

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Age at interview: 33
Sex: Female
Age at diagnosis: 28
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It was pretty grotesque really. It was just so weird to have this bit of your inside popping out. Yeah. And also to think that you've got like "poo" on the outside of your body, you know sort of carried with you rather than just got rid of. It was really hard to get my head round that.

I found it really difficult having people helping with that aspect as well. Because I had to have nurses come and change the bag in the, in the first few days after surgery and I, you know I didn't want anyone else to have to do it really.

But anyway, actually kind of dealing with it on a sort of day-to-day basis I did it but I never liked it, I could never accept it as part of my body. I was always waiting for it to be put back really.

And again like I didn't want my husband to like have anything to do with like touching it or you know he wanted to kind of learn how to look after it but I didn't let him, I didn't want him to.

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Last reviewed August 2016.

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