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Colorectal Cancer

Ileostomy after bowel cancer surgery

An ileostomy is a surgical procedure in which the ileum (part of the small bowel) is brought out onto the abdomen so that bowel movements can be collected in a bag worn over the opening or stoma. It functions up to 8 times a day and the waste that passes into the bag is semi-liquid so the bag needs to be emptied frequently. 

 

Chris recalled that his surgery was mainly done by keyhole and that it took about six hours.

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Age at interview: 46
Sex: Male
Age at diagnosis: 45
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I wasn’t quite so prepared for the, for the length of time that the surgery took, but that was partly because they did it largely keyhole. They said they would aim to do so if they could, so a lot of it was done keyhole which means, they’re obviously operating through from the, well they’re operating through from the front, making holes in my, across my sort of my belly. But the area they were trying to get to was kind of right at my back, so lots of things in the way that had to be sort of pulled aside and I can imagine that was kind of fairly time consuming. And there are lots of important nerves and other things in the way which control, amongst other things your ability to pee and to get an erection. So I was glad that they took their time over that. I think I was about six hours of general anaesthetic.
 
So what are the incisions like if it was keyhole? How big are they?
 
I think they were, there’s one that, I actually can’t remember because you’d be hard pushed to find the scars for the keyhole now. There were two or possibly three, I’m not sure if they were all proper keyhole because I had some drains put in as well. But I mean they have healed fantastically well, it wasn’t entirely keyhole, there was a stage where they did have to kind of take a probably about a six centimetre cut below my belly button, down, and that again healed very nicely.
 
But as I say I think I was reasonably well prepared for that, and when I came round after the surgery I did have a bag, a sort of pouch for the ileostomy, as we had sort of expected would need to be the case.
 
Strapline' Chris recalled that his surgery was mainly done by keyhole and that it took about six hours.
Keywords' ileostomy, surgery, keyhole

 

Before Chris could leave hospital he had to learn how to change his ileostomy bag. Having an...

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Age at interview: 46
Sex: Male
Age at diagnosis: 45
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So I’ve had the surgery. I was in hospital for about six days after the surgery, I could have gone home possibly a day earlier, but I did have a bit of a wobble on the day they were planning to discharge me when I was basically tasked with removing the ileostomy bag and cleaning myself up and putting a new one on. So I mean my, my routine now is to do that still every couple of days, it’s something that you need to be able to do yourself obviously before they sort of let you home.
 
And I don’t know, there was just something psychologically that sort of got to me, there is a little bit of a yuck factor that you have to get over. But that was my one, my one wobble and they decided that it would be wise, and I was happy too to just stay in another night, and then repeat the exercise the following morning. And it went absolutely fine. So I was then kind of able to look after myself from that sort of perspective.
 
And, and really the, the ileostomy has been far less of an encumbrance than I had imagined. I mean you know, they really are quite discreet, leakages happen occasionally, sometimes it’s because I’ve been a bit lazy and I’ve pushed things and sort of left things a bit late before actually emptying a bag, but generally speaking its, yeah, it’s far less of a deal than I anticipated it would be.
 

Ileostomies can be temporary or permanent. This depends on whether it is possible for the surgeon to reconnect the bowel once the tumour has been removed and healing has taken place. Some people have their temporary ileostomies reversed after a matter of weeks while others have to wait much longer. Occasionally complications mean that reversal proves impossible and the ileostomy must become permanent.

For someone whose bowel function has lowered their quality of life, a permanent ileostomy can bring positive change. One man, who has lived with an ileostomy for over 30 years, describes what his life was like before his ileostomy and how the operation improved it.

 

Explains how an ileostomy improved his life.

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Age at interview: 65
Sex: Male
Age at diagnosis: 35
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Well basically the first problem was looking for toilets. I had to go to the toilet rather a lot and I therefore basically know where every single toilet is in Birmingham, or I did then, in the 1960s.

And it must have been about I couldn't even take the kids to a football match, I couldn't go on a bus, I couldn't travel on public transport because there wasn't, obviously there wasn't a toilet anywhere near.

If you had to go, you had to go quick. Life was hell really and then I started being in great pain, and I had about a year of, two or three years of a lot of pain.

So in a way the ileostomy actually improved your life?

Yes, definitely. Oh, I had a new, I was a born-again person really because of the ileostomy. I could do things I hadn't done for ten years. And it grew from there really. It gave, it opened all sorts of things for me.

There is me, now I could walk down the road, go on the bus even, I hadn't been on a bus for five or six years. Go on a train, wonderful. Daren't go on a train. Especially if it's a closed-in train with no toilets or anything like that. In fact I didn't go on a train at all for, I couldn't go in an aircraft. I couldn't go anywhere before. And here's me now, I could go anywhere, do anything no problem' skiing, diving and sailing.
 

For those whose ileostomies are relatively recent, learning to live with them can be a challenge. Some people had taken a positive approach to their ileostomy. One man experienced no real difficulty in coping but pointed out that his situation was made easier by knowing other people who had one.

 

Knowing others 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 um, 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.
 

The majority of people had temporary ileostomies and found them difficult and, at times, traumatic, to live with. One woman describes how, at first, she couldn't bear to deal with her ileostomy but eventually came to terms with it. For others the ileostomy contributed to low self-esteem and made them feel like an invalid. For some, dealing with the ileostomy was the lowest point of their cancer experience. Several people had had traumatic experiences with their ileostomies which had caused them to weep with frustration or humiliation. 

 

Initially she felt unable to deal with her ileostomy but eventually came to terms with it.

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Age at interview: 54
Sex: Female
Age at diagnosis: 47
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Oh God it was dreadful. The stoma nurses I have to say were excellent, but I found it very difficult in the sense that she would come to me and she would take me to the bathroom in the mornings and during the course of the day to deal with this. And I said "I can't look at it."

And she said "Well, you will do." And a few days on she said "I want you to, to," well, she'd actually got me to look at it.

And then another couple of days afterwards she said to me "I want you to change it today." I said "Oh I can't do that." She said "Yes you can." Yes you can.

And I did do it. I suppose, and in, in time once I'd actually got home and, in my own environment and had to deal with it, you just do. It wasn't pleasant, I didn't like it, I hated it.
 
 

An accident with his stoma bag caused extreme distress.

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Age at interview: 60
Sex: Male
Age at diagnosis: 60
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The bag, it was very hard to cope with at first. I mean we had a stranger in the house asking me questions, about Social Security and things like this and the bag came off and I sat here and I just cried with embarrassment. I just couldn't cope with a stranger in the room as well.

And my wife took me from here to the toilet and she had to completely undress me and I just stood there crying. And I had to, my wife is such a brick, the things she's done for me, she just moons in, carries on, clears up, no tears, no nothing she's so strong and it made me upset to see her coping with me. I wanted to cope by myself and I couldn't.

I think that's the hardest thing to watch someone you love looking after you and you feel as though you should be doing it, as the man you feel you're the protector, the provider, the everything. To see your wife washing your feet or creaming your feet or taking your underwear off or cleaning you up it's so humiliating.

Even in front of your wife I thought "oh God I didn't want her to have to do things like this for me ever, ever."
 

Specialist stoma nurses help people learn to manage their ileostomies.

 

The specialist nurses have helped Chris to look after his ileostomy. There are many different...

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Age at interview: 46
Sex: Male
Age at diagnosis: 45
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Does the skin get sore, or is it fairly easy to look after…?
 
I think yeah generally it’s been fairly easy to look after. I, again the, it’s the colorectal nurses; there are specialist nurses who sort of helped get me sorted out in hospital in the first place. I phoned them up a couple of times at various points.
 
There are a myriad of products around this, there’s you know a huge range of different sizes and shapes of bags and adhesives, and all the rest of it. And if something isn’t working for you then I certainly would encourage people to you know talk to the specialist nurse probably who sort of is looking after them remotely probably, though not necessarily seeing them. But just give them a call and they can often arrange for you know samples of alternative supplies to be sent to you. And, and you can try them out.
 
And so there are different wipes for kind of removing the adhesive, which I’ve tried over time. Something that I have used more recently because there was just a little bit of soreness developing on the skin, it’s like a you know a barrier, so again it’s like a sort of a baby wipe type thing, you wipe it round and it just creates an extra sort of protective layer on the skin, but you can still then stick the bag over the top.
 

 

Chris found that he could obtain bags for his ileostomy on prescription through the GP.

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Age at interview: 46
Sex: Male
Age at diagnosis: 45
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You can order it. The ordering system locally here has certainly been very good as well. I mean they basically sort of set me up with an account with one particular, I think they manufacture and supply products, but they will supply other people’s products as well as their own.
 
And the way that that system works, is, is pretty neat. You have to be thinking probably about a week ahead. So you need to be sort of, you know, checking your stock and thinking about a week ahead, but given that I only change my bag usually three and half, four times a week maximum or whatever, that’s not too large a stock I need to kind of worry about.
 
But essentially I phone them up, tell them what I want. They drop a note to the GP because these items are prescribed, and the GP I think fills out the prescription and sends it back to them. They then courier the goods to me. That sounds like a lot of stages but actually I’ve never known it take more than about five working days from start to finish so that’s reliable, and that’s, you know, that’s important to know.
 
Very useful. And that’s all paid for by the National Health Service?
 
Yeah, oh everything. I mean yes, I mean because of the cancer diagnosis I get free prescriptions anyway, and these are all prescribed items.
 

 

After Chris had his ileostomy he found a range of products, such as a support belt, that were...

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Age at interview: 46
Sex: Male
Age at diagnosis: 45
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And you know it goes beyond the immediate kind of ileostomy itself. I mean I did experiment. I’ve got some special pants which they’re not as great as I thought they might have been. They were I think oversold slightly. But also I wear a lot of the time, I think they call it a hernia sort of support belt. But it’s basically just a slightly elasticated belt around my middle, which will help keep the bag in place, but also it’s quite nice, there’s times when if you don’t have this on, I, it feels like the bag can sort of tug slightly. With it on I’ve got sort of even pressure all the way around me in a big circle around my middle, and that actually just feels much more comfortable. Whether it will actually reduce the chances of me getting a hernia, which is one of the things that can happen when you have an ileostomy, I’m not entirely convinced about that, but it, and the surgeon doesn’t seem to be any too worried if I do develop a hernia anyway, because he says it’s easy to fix at the same time as the ileostomy reversal, which will happen in due course. But just pointing out that there are a range of products that go beyond actually just the bags, which I would encourage people to look at. And experiment with.
 
 

One man describes how a visit from two Internal Pouch Support Group (Ileostomy Association) members helped him come to terms with his situation.

 

Meeting other people with ileostomies gave him encouragement.

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Age at interview: 65
Sex: Male
Age at diagnosis: 35
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Well next thing then is feeling very sorry for myself because I've got this blinking, I've gotta wear this bag and I've got this thing sticking out of me. And you feel as though you're a sub-human and I was in a very, very low state at the operation and in recovery. And this girl came down in, down the ward in a trouser suit, a very slim lady, very smart and she came to me and said "I've got an ileostomy" and I looked at her and I could see no sign of anything.

That gave me a lot of hope and then with her also came another chap who was a member of the Ileostomy Association, they were both members of the Ileostomy Association and they both had got this stoma. And he was telling me that he could he was building his kitchen, building a kitchen, laying bricks and things. I thought "oh crikey, that's not too bad is it?"

That gave me a lot of hope. I was very desperate at that particular time after the, I thought it was the end of the world for me. But then as I recovered I found that I was out of pain for the first time for about five or six years. I hadn't got any pain anywhere, after I recovered from the operation that was. And life was beginning to come back and that was, I'd forgotten what life was like.
 

For more on ileostomy 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'.

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

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Last reviewed August 2016.

Last updated August 2016.

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