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Colorectal Cancer

Information and support about colostomy or ileostomy

Learning to live with a colostomy or ileostomy, whether on a permanent or a temporary basis, can be a challenge. The information and support available to people both before and after surgery has a major impact on how they experience this process. Different people need different kinds of information and support at different times. When these needs are met the process of adjustment is generally easier. The levels of information and support available to people, the ways in which information and support were offered, and the quality of what was offered were extremely variable. 

Many people identified the period before surgery as crucial to their experience. Those who knew what to expect because they had received good information before their operation, usually from a specialist stoma nurse, were better prepared to deal with their situation afterwards. One woman describes what was for her a 'well managed' part of her experience. Another man had benefited from being shown a video which gave him a clear idea of what to expect. Seeing pictures of stomas and being able to handle stoma bags before surgery was generally considered helpful.

 
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Explains how her information and support needs were well met.

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Age at interview: 33
Sex: Female
Age at diagnosis: 28
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I think that bit was managed really well actually because the, the nurse, the particular nurse, specialist nurse for, was really, she was a really lovely person. And she spent time with me before kind of showing, sort of you know drawing pictures to show me what it was like and what it was, what it was going to look like, where it was going to be.

She showed me the different bags that you could have on them. What I was likely to have to have and then she was around a lot you know, she kept popping in and out sort of before the operation and afterwards.

She was very good on the emotional side as well because she did talk to me about how I felt about it and she gave me lots of encouragement, that I was doing really well with it and kind of, I think she had one herself actually, I think she did.

I think she was actually like an example of someone who lives with it and who was also like, she was an incredibly good looking woman and you wouldn't know, like from looking at her, so that kind of gave me, sort of inspired me really, it was something that I could manage.

Face to face discussion with a stoma nurse or other appropriate person before surgery was also highly valued. One woman found the printed information she was given confusing and wished she'd had an opportunity to talk things over with someone. A man who has lived with a colostomy for nearly 30 years argues for the importance of pre-operative visits to new stoma patients by volunteers from the Colostomy Association.

 

Felt she needed face to face contact to fill in information gaps about her colostomy.

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Age at interview: 53
Sex: Female
Age at diagnosis: 39
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I was given a booklet which was entitled, if my memory serves me correctly "Living with a colostomy",  which was a general book which I think would have been used for people who were having a permanent colostomy or having a temporary colostomy, as mine was.

So that explained about a stoma care nurse and about the services that were available for taking away any items of bandages or dressings and that type of thing. That was a general booklet which was helpful.

I think at the time I would have rather that had been explained to me by a human being rather than a booklet. Because although I thought I was reasonably knowledgeable about bits and pieces of the body, I think it was, I would have preferred that had been face-to-face rather than diagrams in a booklet.

But I think perhaps I didn't understand that stoma was the method of interrupting the, the colon and I think perhaps I didn't understand the terminology, not that that really mattered all that much, but I don't think I understood that. So I think I would have been grateful for a little bit more personal help at that stage.

I didn't need bolstering up about the operation, I think I really needed an explanation of what was going to happen. That would have helped me more I think.
 

Argues that the shared experience of other people with stomas is invaluable to new stoma patients.

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Age at interview: 87
Sex: Male
Age at diagnosis: 62
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I don't know whether I said this to you before but over the hundreds of people that I saw in 22 or 23 years whatever it was, none of them was ever less than eternally grateful, they were so pleased that somebody could take the trouble to come along and explain this to them because it was a completely closed book to them they didn't know and the hospital staff don't know and the stoma care nurses don't really know.

They've got of bit of learning from books but it ain't nothing like living with it.

And when you live with one you learn that it can be quite capricious at times and it can do all sorts of things of odd things that you can't expect or you don't expect and really and truthfully the best thing is to find somebody who's got one.

Now, I think that the pre-operation talk is the most important talk of all. This is the time when you know you haven't had it yet and every odd thought can go through your mind about how terrible it's going to be, what a terrible operation it is, what am I going to look like afterwards, I shall be a scarecrow, I shall be this, how can I manage it, who's going to tell me about it, what happens?

Sometimes anxiety about having a stoma is so great that people are unable to take in the information and support they are offered. One woman explains how her dread of a temporary colostomy meant that even discussing it before her operation was a painful process. 

 

Her anxiety about having a temporary colostomy made it hard to take in information before surgery.

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Age at interview: 56
Sex: Female
Age at diagnosis: 53
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So I went into hospital and I think the thing that I really was terrified of was the stoma and that to me was more scary than the actual operation.

And so he arranged for the stoma nurses to see me and explain the site of the stoma and so on and what would happen. And I was trying to block my mind like okay I don't want to know that and I'm fortunate I have good support from family, my sister came over though she didn't know at that time but when she came over she knew about it and I told the stoma nurse "Well you tell that, you tell that to my sister," like I didn't want to know it's a matter of like saying no it doesn't exist.

When the stoma nurse came to see you before the operation what did she explain to you about the stoma?

She brought the different types of the bags, the colostomy bag, the different bags that were available and the way it would work and how often it was to be changed. She explained all that but it was very painful.
 

Occasionally, people received no information before their surgery because they were not expected to need a stoma. But for others information and support were inadequate and offered too late. One man explains how he did not receive a visit from the stoma nurse until minutes before his surgery (Interview 16). 

Information and support are equally important after surgery when people are learning to live with their stoma.

 

Chris obtained information about diet and other matters via booklets, from the internet and from...

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Age at interview: 46
Sex: Male
Age at diagnosis: 45
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Did the hospital, did the nurses themselves give you information and leaflets?
 
Yes, yes they gave me information. I mean there was quite a lot of stuff about diet after the surgery. And basically since the surgery I’ve been on a low fibre diet, so avoiding all the things that you’re encouraged to eat if you haven’t had this sort of surgery. Like you’re sort of fruit and whole meal flour, and all the rest of it. And so you know there’s a lot of information about that . They also gave me some sort of initial sort of information booklets, I think probably from Beating Bowel Cancer and Macmillan, which I then followed up and found there was an awful lot more information available on-line.
 
Beating Bowel Cancer have a good scheme set up where they try and buddy you up with somebody who’s actually gone through something similar, but maybe is a few years sort of kind of further on from you, and has volunteered, I can’t remember what the term they use, “A friend,” or something like it. We did actually explore that briefly, but once word got out in the local community because I wasn’t, well I was, I was keen that people knew what was wrong with me basically, I haven’t kept this from any sort of colleagues at work or friends or family, so they were sort of kind of aware of it pretty much straightaway. I just wanted people to know because obviously it was going to have an impact on my life and all the rest of it. But through that sort of informal network I found out that somebody who I knew vaguely had actually gone through a very similar scenario to me five years earlier, and is still fighting fit and around now, and essentially sort of in the clear to all intents and purposes. So I actually didn’t pursue the sort of buddy arrangements that Beating Bowel Cancer would facilitate. Instead of that I contacted somebody who I actually knew already a bit.
 

 

One man describes the difficulties he experienced when the necessary information and support were not available. 

 

Having both a permanent colostomy and a temporary ileostomy he had to learn to manage them with...

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Age at interview: 54
Sex: Male
Age at diagnosis: 48
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Again there was no stoma nurse there to explain how to manage  this ileostomy and colostomy.

I mean, for instance, how often do you change this and what about showering? No one, no one had actually told me that I could actually have a shower or a bath with these things still on.

It was a self-learning, steep-learning curve on my part. I asked in hospital for any information at all that they had that I could read up on and maybe take home, brochures and stuff like that, leaflets and what have you. 

So I took those home with me.

And then one, when I got home I got books and stuff from my local library and read up again. And I have medical encyclopaedias here and read up as well, and then of course on the internet. I went on to medical sites and sought information. 

But I must say there is now in situ a very competent stoma nurse, specialist stoma nurse in the hospital and she is, has been a great help and a great assistance to me. And I know she has been a great help and assistance to all people who have had the colorectal surgery since I've had mine.

Because it was an awful experience of having no one to teach me how to manage my uh particularly the ileostomy because I had so many accidents with it. I was devastated.

Most people did receive support and information from a stoma nurse, but many still said that important aspects of their experience were never mentioned until something went wrong. They felt strongly that they would have been less distressed if more comprehensive information about common problems with stomas and quality of life issues had been offered as a matter of routine. 

Many people were extremely alarmed the first time their stoma bag ballooned (became inflated with gas) although they later learned that this happens commonly. A woman who counsels other cancer patients believed that people should be offered more information about quality of life issues like how a stoma might affect their personal relationships (Interview 08). A man who has had an ileostomy for 30 years maintains that the best information and support comes from other people with stomas. He describes a phone call from a distressed friend who did not know what to do when his ileostomy began to bleed.

 

He feels that there is no substitute for personal experience of life with a stoma.

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Age at interview: 65
Sex: Male
Age at diagnosis: 35
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The stoma nurses are very good, they'll tell you what appliance to use or what's the best appliance. And they do say, go through different appliances to see which one suits you because one appliance won't suit another person.

But when you're speaking to somebody who is from the Ileostomy Association or whether they've, they've got a stoma, at least you do know that they, they know what they're talking about for one thing because they've got one. 

And there's a little incident, there's a friend of mine who's across the road from here who's also had, I think he had a colostomy I think.

Anyway he had to have a stoma, and they let him out of hospital and they thought great he's OK and then there's things they forget to tell you like if you touch your stoma it'll bleed a lot, and bleed a lot. And they didn't tell him this and he happened to touch his stoma and he phoned me up in panic because he's only across the road and he knows I've got this. And he said "Hey what can I do?"

And of course I could go round straight away and say "Oh yeah, nothing to worry about that, that'll stop quite quickly, but if you do touch your stoma it will bleed." And nobody told him about that. And nobody told me about that actually until I actually touched my stoma once and it bled. And they wouldn't know that unless they'd actually experienced it would they?
 

For more about some of the issues raised here see: 'Learning to manage a stoma'; 'Daily living with a stoma'; 'Sexuality and relationships with a stoma' and  'Feelings about having a stoma'

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Last reviewed August 2016.

Last updated October 2011.

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