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Colorectal Cancer

Colostomy after bowel cancer surgery

A colostomy is a surgical procedure in which the end of the bowel is brought out onto the abdomen (tummy) so that bowel movements can be collected in a bag worn over the opening or stoma. It functions once or twice a day and the bag has to be changed that often.

Colostomies can be temporary or permanent. This depends on the position of the cancer and whether it is possible for the surgeon to reconnect the bowel once the cancer has been removed and healing has taken place. Some people have their temporary colostomies reversed after a few weeks while others have to wait much longer. Occasionally, complications such as adhesions (a build-up of scar tissue) occur which mean that reversal proves impossible and the colostomy must become permanent.

For someone whose bowel function has lowered their quality of life, a permanent colostomy can bring positive change. One man, who underwent surgery to remove his tumour but was not given a colostomy in the first instance, experienced years of complications, distress and discomfort before choosing to have a permanent colostomy. He explains how the colostomy improved his life. Another man who has a permanent colostomy and, for 8 months, also had a temporary ileostomy, explains why he finds the colostomy easy to live with by comparison.

 

A permanent colostomy improved his quality of life.

A permanent colostomy improved his quality of life.

Age at interview: 63
Sex: Male
Age at diagnosis: 58
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Believe you me it was the finest thing ever happened to me. I feel better now than I've felt since before I had cancer and, Percy his name is by the way.

You have a name for it?

Oh yeah I call him Percy yes.

Why's that?

I don't know, well when I talk about it to anybody instead of saying, referring to my pouch I can just say, I refer to him as Percy (laughs).We've become quite attached, as they say, excuse the pun (laughs).No as I said it's the best thing ever happened now that I've got the permanent colostomy.

Is that because you're not worrying about having accidents all the time and

Well no well I don't have the adhesions any more, I don't get, naturally I don't get any discharge any more because it's, everything goes into the pouch.

I lost so much weight because that was another thing when I had the fistula and my food wasn't doing me any good they said and my weight it was just falling off me and I went down to 14 stone which you might say well that's too much anyway but I am six-foot-three. I'm back up to 16, just over 16 stone again now so my normal weight and as I said I feel great yes it's the best I've felt as I said for a long, long time.
 
 

Finds a colostomy easy to live with in comparison with an ileostomy.

Finds a colostomy easy to live with in comparison with an ileostomy.

Age at interview: 54
Sex: Male
Age at diagnosis: 48
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After getting the ileostomy reversed I have, went back to a reasonable normality in leaps and bounds because the colostomy and the state of the stuff that comes out into the colostomy bag is a lot like your normal faeces when you go to the toilet to sit down and have a bowel movement.

And although you don't have the same control the consistency is a lot better and more manageable.

It's less liquid you mean?

It's not liquid. An ileostomy is like having permanent diarrhoea, and it really was ruling my life but once I'd got that off, who, even the psychological uh sense of having it removed was wonderful and so although I was dismayed at having a bag fitted, when I had two I was really annoyed. I was glad I ended up with one.

How long did you have the two together?

For eight months. And the colostomy during that time had given me very little trouble.

Once, I say, once I got the ileostomy reversed uh, I started to put on weight, my outlook was brighter because I wasn't too concerned about wondering would there be a toilet at the other end you know, because this thing went every maybe, couple of hours or maybe it missed a day before anything happened into the bag. Whereas the ileostomy was going consistently it was, like a leaking pipe.

Some people learn to live with a permanent colostomy very quickly and find that it has little impact on their lifestyle. For others, emotional distress or practical difficulties with managing the stoma may prolong the period of adjustment. Some people never feel comfortable with their colostomy and may become isolated by the loss of social confidence.

 

Explains how easily he learned to manage his stoma and how it doesn't interfere with his life.

Explains how easily he learned to manage his stoma and how it doesn't interfere with his life.

Age at interview: 80
Sex: Male
Age at diagnosis: 76
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Well I, I, when I'd had the operation a stoma nurse came in just to advise you what, what the procedure was for changing the bag, and they only showed me once and it was so simple that you, it, it, you didn't want any more people telling you.

But there was, there's a, the stoma nurses are there all the time if you want any help you've only gotta phone and they'll come down to me, in fact they came to me when I had the operation, they came here once or twice to look at me, see if I was alright.

And they found that I could manage quite simply, but if I wanted anything I could phone them you see. But I, I haven't done so because it's so simple, it's a simple job of changing a, a bag, you know a pouch, easy, I can do it in three or four minutes you know.

In fact it doesn't, doesn't, if I'm out somewhere at a hotel or somewhere, I have lunch, I can nip out and change the bag in five minutes' easy. You know.

 

Explains how her constant fear of accidents with her stoma bag have affected her social life.

Explains how her constant fear of accidents with her stoma bag have affected her social life.

Age at interview: 65
Sex: Female
Age at diagnosis: 59
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I used to go out quite a lot more socially than what I do now. I mean I hardly, unless it's with the group I mean I don't go out socially at all.

Is that because you don't feel well enough?

No I think it's more to do with the stoma.

Right.

Because like I mean obviously I've had a lot of accidents with it and even now I still do.

I'm always frightened that the bag is going to come off and, because it has happened and er that do prevent me, like when I know it's a social evening like eating, a few drinks, I mean obviously I don't drink that much now but I can't do it because I've got the fear of the bag coming off.

So I think that basically is what's stopped me from going out socially. 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.

One woman decided to use colonic irrigation as an alternative after having a colostomy for several years because it helped her feel more in control of her life. Some people with temporary colostomies adjusted to them easily and quickly resumed their normal activities. One woman organised and appeared smartly dressed at a 50th birthday party for her husband less than 2 weeks after leaving hospital. 

 

Describes colonic irrigation and how it helped her feel more in control of her life.

Describes colonic irrigation and how it helped her feel more in control of her life.

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 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.

I put what they call a sleeve onto the stoma so that anything that, the bowel movement moves through the sleeve into the toilet. I then insert a colotip into my, which comes from the bag, into the colostomy or the stoma and I in fact use, it's a kind of enema, this irrigation is a kind of enema, I just add, put, sorry I insert water, or flow water into it and then it's just the bowel movement starts and flows into the toilet.

And after that, I have to sit around for quite a while after that to see that there's no more spillage.

During that time I just tie up the sleeve and then I've washed it by then and tied it up. It's still on me in case of spillage and I use it to do things round the house and I might read the paper and I wait.

And after about 15, 20 minutes, sometimes even half an hour I, there might be spillage or not but if there isn't I know that I'm clean and if there is well then I just sort that out and go and have my bath or a shower and dress and go to work.
 

Another man explains how well he could manage his colostomy despite minor fears and the occasional mishap. Others learned to cope with their colostomies but never felt comfortable with them and eagerly awaited their reversal operations.

 

Despite minor fears and the occasional mishap he found it easy to cope with his colostomy.

Despite minor fears and the occasional mishap he found it easy to cope with his colostomy.

Age at interview: 69
Sex: Male
Age at diagnosis: 65
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You had to be sure that you, you got the wee click, that it was clicking on right because if it didn't, you, you had no control over your bowels. Not like when you're running around normally you're saying "I have to go to the toilet, I can hold on for half an hour no problem", you can maybe hold on for two or three hours if you want. But when you have a bag and the bowel does its own thing! It doesn't wait for you, you know you, it just happens.

And uh, I was a wee bit apprehensive about it and all, and worried with the smell. I was very, very conscious of this smell. Obviously you've got these wee sprays and all but still very conscious about being out in company, which I was one night, one uh Boxing night we were out the whole family, the whole lot, children and everything, and it broke on me.

And I was sitting, but I wasn't far from home funnily enough and I just said to my wife like "I'll have to go" and she knew. So, I just nipped up home, no problem. In fact, "Where's me dad?" "He's away just doing a job, back again, no problem". Had it all changed inside twenty, twenty-five minutes and I was back again.

 

Explains how she never felt comfortable with her colostomy.

Explains how she never felt comfortable with her colostomy.

Age at interview: 56
Sex: Female
Age at diagnosis: 53
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That to me was the biggest blow, the stoma bag. I couldn't bear to see that I had a piece of something that should be inside sticking out of my skin. I couldn't cope with that and I didn't want to look at it.

But because I was so desperate to get home I said "Alright." So I learned how to change and my husband also learned how to do it because I was quite weak and couldn't like stand for a while even without support.

However I dealt with it, it was six weeks that I had the stoma. Went back after six weeks to check if that had all healed inside because my surgeon said that depending on how well it had healed er that would determine if I could have the reversal after six weeks, that if it hadn't healed I would have to wait more.

So I really prayed so hard and that's one operation that I really wanted to have. I wanted to get the stoma out. Fortunately the test showed that it had healed and er so I had the operation to reverse it.
 

Sometimes complications mean that reversal operations are impossible. One man explains how he coped with the disappointment when this happened to him and describes how he developed a more positive attitude toward his colostomy under the circumstances. 

 

Describes his initial disappointment at finding his colostomy could not be reversed and his...

Describes his initial disappointment at finding his colostomy could not be reversed and his...

Age at interview: 65
Sex: Male
Age at diagnosis: 64
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I'd said "Well fuck it", you know! I did, I, I, I expected to be reversed but it hasn't happened. You know, what was going through my mind, I was just disappointed that I couldn't be normal again as I was.

And I wasn't going up in the air, or shouting and screaming or anything like that, I was just very silent and very, very not upset even, just, disappointed. I think that's the word, very, very disappointed. It's like not passing an exam. That's the type of feeling you know, and nothing worse than that. And the following day I just realised how lucky I was, really. And yeah, just get on with it.

So you know, basically, no I'm quite happy now, I must say and for anybody that goes through this situation, all I can say to them is that it's not the best but it's the best of, better than the other thing, right. So...

The other thing being?

Death! So, you know, that's what it is, isn't it? So, you know, what's better? Better to walk about with a stoma aren't you?
 

Specialist stoma nurses help people learn to manage their colostomies and there are national organisations that help people who have or are about to have a colostomy.

For more on reversal operations see 'Stoma reversal operations'.

For more on colostomy see' 'Learning to manage a stoma'; 'Daily living with a stoma'; 'Sexuality and relationships with a stoma'; 'Feelings about having a stoma'; and 'Information and support for stoma patients'.

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Last reviewed August 2016.

Last updated August 2016.

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