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Colorectal Cancer

Learning to manage a stoma

Learning to manage a stoma requires patience, practice, and knowledge built up over time. While specialist stoma nurses teach people the basics, a lot of learning takes place through trial and error. Speaking to other people with stomas or contacting the Colostomy Association or Ileostomy and Internal Pouch Support Group can be of great benefit.

For the first few days after surgery, stomas are managed by nurses but then people must learn to deal with it themselves. At first, many people felt this was an impossible task, but with the help of stoma nurses they all learned, often motivated by the desire to leave hospital. One man recalls this process and his feelings about it. Another man explains how, for him, learning to manage a stoma was an acquired skill like learning to be a tailor.

 

Explains how he learned to manage his stoma in hospital.

Explains how he learned to manage his stoma in hospital.

Age at interview: 60
Sex: Male
Age at diagnosis: 60
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I was in hospital for 14 days and then the nightmare was to look at my stoma. I'd go into the bathroom and of course the nurses were cleaning the stoma and washing part of me and well I thought I've got to look down at this.

I looked down and thought oh my God what is it? It was part of me and it was horrible (laughs). It was, first of all it made me recoil and I thought I can't cope, I just can't cope.

The stoma nurse came to visit me and she said "You must learn to look after your stoma." There was lots of instructions how to clean it, what to do, what not to do. I listened very carefully, I've got to cope with this, I'm going to be on my own and of course the nurses did not look after my stoma, it was up to me. The quicker I looked after my stoma and everything else the quicker I could go home.

Took charge, bite the bullet, once I got used to looking at it and cleaning it myself I did begin to cope with it quite easily, so much so that, I mean, my wife had sat in on the sessions saying that she would be able to help me but of course there are times when you're on your own in the hospital late at night you're on your own, you can't call the nurse, you've got to cope.

And I did and it was quite, quite reasonably easy after a while I found to cope.
 
 

He regarded managing a stoma as a skill to be learned.

He regarded managing a stoma as a skill to be learned.

Age at interview: 65
Sex: Male
Age at diagnosis: 64
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You can't keep a stoma nurse with you all the time at your elbow because they're not there for you all the time. They're there for you to help you er but you must help yourself, you've got to, you've got to. But it wasn't a pleasant situation to start with.

What turned it around for you, what made you finally get to the point where you could cope with it yourself?

Finding it easier to do.

Technically?

Technically yes, you begin, it's like a tailor you know when you learn, when you're an apprentice, like I was years ago I never ever thought that I'd be able to make a jacket, to me it was a miracle how a jacket took place.

But obviously you go through it in stages and you've got to make it up in stages and eventually you do make a jacket and you're quite surprised the way you do, do it.

And it's the same thing, it's building up er your confidence to get things done and you have to get it done because otherwise there's nobody there. And funnily enough the psychological fact that nobody is there to help you, you have to help yourself, what more can you do?
 

The importance of having adequate support is underlined by a man who has a permanent colostomy and for 8 months had a temporary ileostomy as well. He struggled to learn how to manage on his own because the stoma nurse was on sick leave and therefore unavailable at the time.

 

A man who had both a permanent colostomy and a temporary ileostomy had to learn to manage them...

A man who had both a permanent colostomy and a temporary ileostomy had to learn to manage them...

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.

There are many different types of appliance (stoma bag) and invariably people said that managing their stoma became easier when they found the one that was right for them. One man was managing with the first type of bag he was given but was delighted when his local stoma nurse suggested something better. A man who had learned mainly through trial and error describes the benefits of the appliance he is currently using.

 

He was pleased when a stoma nurse suggested a better type of appliance for him.

He was pleased when a stoma nurse suggested a better type of appliance for him.

Age at interview: 73
Sex: Male
Age at diagnosis: 73
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The bag that the hospital stoma nurse, where I'd the operation, she gave me, there was a two piece arrangement. I had difficulty to begin with, practicing, she left me them to practice with of course. I had difficulty in getting the two together to seal and on the last afternoon before coming home she came and I, I did it and she said "Fine you've done it, no problem," so that was it.

I did cope with it but I remember for about three days, four days, I always had a problem. I kept it on for about two days and then when I was changing I had problems uh a little bit and that worried me, thinking you know if I can't get it on what's gonna happen, but each time I did manage it eventually.

And then the local stoma nurse came and she said "What sort of bag have you got? Oh," she said "I prefer the one, one piece bag." And so she sent me a supply and so after about, four or five days I thought well I'll try one, so I tried one and I stuck with it, far better, far superior.

 

Describes the benefits of the appliance he is currently using.

Describes the benefits of the appliance he is currently using.

Age at interview: 54
Sex: Male
Age at diagnosis: 48
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I'm down now to what I would consider to be mark three colostomy appliances, that's a, a two piece appliance that I've worn. There's a flange that fits on to my abdomen and then you click on the bag. So when you go to change the bag you just take the bag off and dispose of the bag, and it's kinder to your skin because you're not pulling the whole appliance off.

So I change the flange maybe every three days and uh, unless of course maybe there's a bout of tummy upset or something, I get diarrhoea or something, which is, doesn't concern me.

This is very easy to manage. I've learned very quickly to manage it. It's unobtrusive. There are substances now that you can get to squirt into the bag to make it odour-free even if there is an odour. There's a cap which fits over the filter, if maybe you do get a bit of a tummy upset and it's more liquid so you can, you can seal the filter.

The filter on the bag is, is to stop a build up of gas so it goes with away, it doesn't balloon so it's a lot, lot better and it's more comfortable.

Many people found that the skin around their stoma became very sore. This was sometimes because waste matter from their bag got onto the skin and sometimes because they were using a bag that had to be peeled off every time they changed. People with temporary stomas sometimes did not seek a solution because they preferred just to cope until their reversal operation. Other people resolved their problems by seeking advice from a stoma nurse or changing appliance. 

Several people experienced distress over bleeding from the stoma because they had not been warned that this could happen. One man describes his panic when his stoma began to bleed in the shower.

 

He experienced panic when his stoma bled and he didn't know what to do.

He experienced panic when his stoma bled and he didn't know what to do.

Age at interview: 70
Sex: Male
Age at diagnosis: 68
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The one thing that they didn't tell me, and it came as an almighty shock. I was in the shower, I was changing, I was in the shower, water was flooding over it, it was great and I caught the stoma, it must have been with my finger nail, and it bled profusely, and I was frightened.

Suddenly I was standing there and there was blood pouring down my leg, and of course, spreading all over the shower tray, which looked absolutely horrendous, I mean it wasn't, and I, I have to admit that I did panic a little bit.

It stopped probably within, I don't know, 30 seconds. What did I lose, probably a couple of thimble-fulls of blood but that was all. But at that moment in time it frightened me. Fortunately I grabbed a towel, dived for the telephone, phoned my friend, who came shooting round, because he's a near neighbour and said "Oh yes, don't worry about it, it'll stop."

And when he explained to me, it's perfectly obvious. The intestine is full of blood, full of veins because that's what it's doing, it's taking the food out of your intestine into your system. And you've exposed it, you've exposed it on, on the outside, it hasn't got a skin over it like, like the rest of your body has. And I'd just been a bit rough with it. I wasn't rough with it ever after that.
 

Stomas can sometimes prolapse (fall forward through the opening in the abdomen). This can simply mean that it becomes lopsided and slightly awkward to deal with or it can be more serious and require medical attention. One man describes how his ileostomy was painlessly pushed back into place after a prolapse. Another woman had a much more frightening experience. Stomas can also shrink or fall back into the opening of the abdomen. A woman explains how this happened to her when she was on a trip away from home. 

 

Describes how his stoma was pushed back into place after a prolapse.

Describes how his stoma was pushed back into place after a prolapse.

Age at interview: 65
Sex: Male
Age at diagnosis: 35
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What happened with your prolapsed stoma, how did that get resolved?

It got pushed back in again!

Yes. Can you just explain what they have to do to fix it?

Well that's quite it's the doctor tried, because it happened here in this actual room, like it, it suddenly came out, the doctor came and couldn't get it back in properly so they took me to hospital. And I just lay down and they gradually eased it back in. They thought I might have to have an operation but they tried it first and it went back.

So they just physically pushed it back in?

Physically pushed it back in again, gently, with the gel and stuff, gradually pushed it back in and it's amazing it didn't bleed when they did that as well. It was amazing I expected to have blood everywhere but it didn't bleed, they were so gentle with it. I think they put a, I think they had sort of tubes sort of thing, if I can remember rightly, that they did. But they do a lot of pressing and pushing and it, it went back, it must have been the skill of the person doing it really.
 
 

Describes a distressing experience when her stoma prolapsed severely.

Describes a distressing experience when her stoma prolapsed severely.

Age at interview: 65
Sex: Female
Age at diagnosis: 59
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On Saturday night I felt so ill and I thought oh I'd just go up to bed. Well as I got up and went out the kitchen to get a glass of water to me it just felt like something had exploded and obviously I was covered in mess.

It had just come right out and I mean I was absolutely petrified because I didn't know what had happened but I cleared it up to the best of my ability and I just went up to bed and luckily for me my sister was coming on the afternoon but she came in the morning because she said she had a feeling that things wasn't right.

And I was just laying there and she was saying to me "I can't leave you here like this, we'll have to do something, blah, blah, blah."

Anyhow I went "No leave it I'll be alright," you know because I was just that far gone I couldn't even be bothered to be honest.

 

Describes what happened when her stoma disappeared back into her abdomen.

Describes what happened when her stoma disappeared back into her abdomen.

Age at interview: 65
Sex: Female
Age at diagnosis: 59
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We went to Manchester with the group, the conference up there and I think it was my own fault. I lifted my suitcase and I felt the right sharp pain but obviously I just thought oh you know it would go. This was on the train station.

Well then we got to the place like where we stayed, well the next morning when I got up like obviously I was seeing to myself and I took the bag off and I was amazed because all that was there was a hole, because there's doctors and all that there and they said I had to go to hospital and they done x-rays and what have you and they was going to keep me in.

And I went "No I can't stay in like, I'm only up here for the weekend," and he was a nice doctor and he just said "I'll be the judge of that when I've seen your x-rays."

But he did say to [a friend] that he would let me home, he said "But as soon as she gets home tomorrow she must go straight to the hospital," which I did.

For more on these issues see: '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 May 2010.

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