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Colorectal Cancer

Recovery and after-effects of bowel cancer surgery

Surgery is the main form of treatment for bowel (colorectal) cancer. The part of the bowel containing the cancer is removed and the two ends of the bowel are then joined together. If it is not possible to rejoin the two ends then a colostomy or ileostomy may be required. (For more on this see 'Stoma'.) 

The period immediately after surgery was a shock to many as they woke up connected to machines, drains, tubes, and intravenous drips. One woman recalls being frightened when she awoke after surgery. Many people were upset at finding themselves unable to walk, stand, sit up or even move in bed. This was usually followed by rapid improvement and many were able to start walking and looking after themselves within a day or two.

Post-operative routines have changed a lot in the past few years and more hospitals now use a programme called enhanced recovery where people are encouraged to get out of bed, start walking, eating and drinking as soon as possible. This helps to shorten the recovery time needed.

 

Chris was grateful to have his own room. The hospital was clean and bright and was a good...

Chris was grateful to have his own room. The hospital was clean and bright and was a good...

Age at interview: 46
Sex: Male
Age at diagnosis: 45
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I mean the hospital that I was in was very new, very shiny, very clean. It felt a nice environment to be in. I felt it added if you like to my sort of confidence about everything that was being done. And it was, and it’s also, and it’s a building very close to where I work, so I was kind of sort of familiar with it from that sense. So it didn’t feel all that alien and it was a reassuring sort of environment in terms of its cleanliness and bright and colourful.
 
You say cleanliness, were the loos fairly clean?
 
I was fortunate for whatever reason, I was in a room which had its own sort of dedicated loo, and I mean that was cleaned sufficiently. I don’t, I don’t have any recollection of being unhappy with the cleanliness there.
 
So you were lucky enough to have your own room?
 
Yes.
 
But this was National Health Service?
 
Yes that’s correct.
 

In a few cases recovery was disrupted by a major setback. Usually this was a medical complication but one woman had an unfortunate experience when her wound broke down and hospital staff failed to respond promptly.

 

Recalls how frightened she was when she woke after surgery.

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Recalls how frightened she was when she woke after surgery.

Age at interview: 33
Sex: Female
Age at diagnosis: 28
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It was very frightening in intensive care in the first few days after the surgery.

All the monitors, all the noises and the beeps, and I kept thinking "I'm gonna die" because of the beeps going funny and you know "Why is the alarm going off?" And then you can hear, you know there was a man next to me who was on a ventilator and couldn't breath and they kept having to come and like resuscitate him and it was just all really alarming.

And having all these different tubes coming out of me in different places. It was very frightening coming round from the operation and just, I remember like they were rigging it up basically, they were still putting things in and talking and heard them say "She lost a lot of blood in theatre and we've got to get the blood up," and you just kind of hear all these things and I couldn't really talk, because I'd got a pi, you know a tube in my mouth. And, it was scary, yeah, very scary.

 

She failed to receive prompt attention when her wound broke down after surgery.

She failed to receive prompt attention when her wound broke down after surgery.

Age at interview: 74
Sex: Female
Age at diagnosis: 68
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They got the house surgeon this first time early in the morning and he suggested to the sister that she pulled it together and bandage it up tightly. But the wound was, hadn't been stitched enough and it was bleeding very badly and so she said "Well I, that won't be enough, I'm going to put some butterfly sutures on."

Well during the day I realised that it was getting quite, I could feel it was all sloshing around and I kept saying "This is bleeding again," "Oh it'll be alright." There was only a staff nurse on all that afternoon and she kept padding it up when a little bit of blood seeped through she kept putting more padding on and I said "But I know it's bleeding." "No, no, no, it'll, no it'll be alright." I said "Well I don't think it is alright."

And then it got towards the time when she was going off duty and I said "Look can you get a house surgeon up to look at this because it is, I know it's bleeding."

So she put some more stuff round, she said "Well I'm certainly not going to take that dressing down tonight, I'm going off duty soon."

Then the night staff came on and by then there was a pool of blood in the bed again with big clots and I was really feeling wafty so I hailed the night sister, night nurse and I said what had happened that I was quite sure that my dressing was, needed something you know and my wound was bleeding.

And she looked in the bed and "Oh my goodness," and then all bells rang.

The speed of recovery varied greatly from person to person. One man's GP said he was 'like  Rasputin', stick a knife in him and he jumps up again'. A woman described her consultant's amazement at finding her 'sitting bolt upright in bed with her heated rollers in and her make-up on 2 or 3 days after surgery. For another woman, however, recovery was a slow and painful process. 

 

She was extremely weak after surgery.

She was extremely weak after surgery.

Age at interview: 56
Sex: Female
Age at diagnosis: 53
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Well physically I was totally incapable, just couldn't feel anything. The first feeling was like I had tubes stuck out from different parts of my body and I thought, "gosh I was well yesterday, I was perfect and look what they have done to me". 

That was a terrible sort of feeling and I couldn't move. It was even a big effort to move a part of me, part of my body and I was very, very, very upset and you know disturbed.

The physiotherapist came every day to make me stand and sort of move my muscles a bit so that I wouldn't have other problems due to the sort of not moving around. I think it was about four or five days before I could like stand for a few minutes just even while they like changed the bedding. I couldn't like stand without holding on to someone or to something. But they made me sit on the chair for a little while, but I got tired very easily. I would just fall asleep talking to people.
 

The recovery period in hospital is normally between a week and 10 days. With the enhanced recovery programme, most people are well enough to go home within a week of their operation. The recovery period for this type of major surgery can be long although some people are able to resume many normal activities as soon as 6 to 8 weeks after their operation.

 

Stephen spent 6 days in hospital after his hemi-colectomy. He recovered quickly and was soon going back to school part time.

Stephen spent 6 days in hospital after his hemi-colectomy. He recovered quickly and was soon going back to school part time.

Age at interview: 19
Sex: Male
Age at diagnosis: 15
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So how long were you in hospital during that time?

During that time 

After surgery.

I was in hospital for six days I think.

And what were your experiences, we quite like to hear people’s experiences of being in hospital.

It was, I was, yeah because of my age I was sent back to a kind of children’s ward, I was 15 at the time, and obviously they’re not used to children in this hospital that I was at then, used to children having such big operations, it was only a relatively small hospital and it wasn’t a specialist children’s hospital. So they weren’t really used to children having such big operations. So as a result I kind of got lots of attention, lots of care almost if that makes sense. And the communication then was quite good actually, but it was kind of like I think they knew, the hospital knew they kind of made mistakes with my diagnosis so everyone was trying to perhaps rectify that a bit. But my experience after the surgery was, was okay.

So how long did you have then, that you went back home again? How was the post-operative recovery?

Yeah a normal person who has an operation, I was told takes about six weeks off work or something like that. Within two I was starting to go back into school, 

Oh.

just starting to do stuff so I was very keen not to let things keep me down. I probably pushed myself a bit too hard, I always do. But I was out there, I was trying to do what I could which is my way of dealing with things so,

So you didn’t have a long time off school really?

No. No I had I started going in just like, I don’t know a lesson or two and then crept it up to half days and before I knew it I was just back and doing, doing full days like I could. I was still getting rest at home and sleeping when I needed it.

What about when you came home? Did the GP come and visit you? Or did you get any follow up from local doctors?

I don’t really think so I think we regularly went to the GP’s just to see the nurse just to get the dressing changed and to make sure it was okay and then I think it was after a certain amount of time we had to have the stitches out, so it was, we were in contact then.

So that all went alright?

Making sure the wound was looking okay. But yeah fortunately I had no infections anything like that. The recovery of the wound itself was absolutely perfect.
After effects of surgery may be experienced in the medium to long term. These include adhesions, (a build-up of scar tissue that can cause episodes of severe abdominal pain or blockage of the bowel), sexual dysfunction, and emotional distress. Post-operative infections, DVTs (blood clots), and other complications may require further treatment and delay recovery. Restoring eating and bowel habit can also be a long and difficult process. (For more see 'Eating and bowel habits after bowel cancer surgery'.)

 

After surgery Chris had a catheter. When it was removed he found it impossible to pass urine, so...

After surgery Chris had a catheter. When it was removed he found it impossible to pass urine, so...

Age at interview: 46
Sex: Male
Age at diagnosis: 45
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Oh there’s one thing I want to mention, which was something that actually I wasn’t entirely prepared for, so this maybe goes against what I was saying earlier. During the surgery, this is the low anterior resection, they did warn me in advance that they’d be poking around near the prostate and other bit’s and bobs and you know there were some risks of nerve damage which weren’t you know, well you had to just cross your fingers and hope. And hopefully, thankfully for me I didn’t experience any serious problems. But short term there was obviously some sort of bruising and some inflammation and some swelling in that part of the world, which meant that I was, I had a urinary catheter in for the entire time that I was in hospital. They tried removing that, well they did remove it twice during my six day admission, and I wasn’t able to pee either time, and actually that was probably the most unpleasant experience during that six days.
 
The first time I was rather naive and thought if I drank a lot I, it would actually help me to pee. I think it had the, exactly the opposite effect, so I had taken on too much liquid and it took them a while to find a doctor who was competent to re-catheterise me, so I had an extremely large bladder for a while, waiting for that. And that was uncomfortable and unpleasant.
 
We tried it a second time, basically managed slightly better, but I, sorry the, sort of managed from the point of view of having the right people available at the right time, I had to be re-catheterised because again I couldn’t pee. But because everything else was fine, and you can be sent home with a urinary catheter, I was sent home.
 
I was pleased to get home, but that was quite an encumbrance. And I actually had that for about three weeks, at home, they just said, you know, “Go home, just you know, deal with this just give everything time to just kind of calm down,” and then they called me into something they called a “Twoc” clinic, “Trial without catheter,” where myself and a couple of other glum looking chaps were sat in a room, sipping water and taking it in turns to sort of try and, try and pee and also we had ultrasound scans done to see kind of what was in our bladders, sort of...
 
I was able just about to pee on my own then, and went home without the catheter. But slightly anxious because it wasn’t a normal pee at all, it was certainly squeezed out to some degree, but I was so determined to get home that’s what I did. Having got home, things improved gradually over the period of the next week. And I think there was probably about another week after the catheter had been removed before I would say that things were back to normal. And that was a, that was a huge relief actually because that, you know, that really restricted my mobility, and all the rest of it.
 
What did you do? Did you strap the catheter and the bag to you, under your trousers to your leg?
 
Yes, yes I had baggy tracksuit trousers and I strapped it to my calf I think from memory. And then at night I was able to connect it to a sort of something else which kind of had a larger sort of collection, bag or whatever. But that was unexpected, from my point of view, and actually yes, the quality of life or whatever post surgery, that was, that was the worst bit for me.
 
 


Several people experienced depression, panic attacks or flashbacks after surgery which sometimes lasted for months or even years. One woman felt that the lack of opportunity to discuss her feelings after surgery contributed to an emotional decline. Another woman became depressed more than a year after her operation. A man describes the panic attacks he suffered for nearly a year after coming out of hospital, while another man, who had a history of depression and became depressed while in hospital, found that staff in the surgical ward did not know how to deal with him. The woman who did not receive prompt attention when her wound broke down after surgery had flashbacks of the experience for months afterwards. 
 

Explains how she became depressed after surgery.

Explains how she became depressed after surgery.

Age at interview: 54
Sex: Female
Age at diagnosis: 52
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I kept my spirits up, but after the operation I, I felt very low. Obviously I was weak from a loss of blood, and it was um, a major operation.

But I was amazed at how that fighting spirit had completely gone. I was so low mentally that I, I really felt that I could have just faded away, I had absolutely no fight in me at all. And I felt like that for the whole of my time in hospital. I felt very alone and very frightened, as though the whole world was against me.

And I was in a ward with mostly younger women who were in there for gall bladder problems and so forth. And um, I felt, you know, I'd had cancer and I'd had this big op, and there was nobody really to talk to about it.

There really wasn't the time to, certainly wasn't the time to speak to nurses about um how you were feeling emotionally, I didn't feel it was fair. And nobody sat by my bed and, and asked me, they, they really did not have the time at all, and I was only aware of one other person in the ward having cancer and he was quite a young boy, well he was very young, he was my son's age and I did talk to him, we were at opposite ends of the ward.

But I was moved fairly quickly to the, another one and there was nobody in that ward with cancer so I couldn't really even talk to another patient about it.
 
 

She experienced depression long after her surgery.

She experienced depression long after her surgery.

Age at interview: 56
Sex: Female
Age at diagnosis: 53
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Well after a year and a half I was so determined to get on with my life that I went back to work much to everyone's surprise. I kind of felt I was alright and that I would get back to work. And I tried that for about four months but it wasn't getting any better. I was getting very tired and I felt it was setting me back er in kind of the recovery period and I was not coping well and then that made me terribly upset and angry with myself.

That's the other thing I was getting very angry with myself about a year later is when it kind of perhaps it kind of came back to me the whole, I was recollecting everything and I was reliving it and I was angry with myself for being ill and being really hard on myself and that's when I was terribly depressed and probably giving a hard time to my family.

I was getting angry with the children, with my husband. And there were times I told my husband "Just put me in a home or something you know then they can look after me."

And it's not because nobody was looking after me it's because my anger with myself for being troublesome to others and not being able to do things for myself or do the things that I should be doing.

 

Describes the panic attacks he had for a year after surgery.

Describes the panic attacks he had for a year after surgery.

Age at interview: 63
Sex: Male
Age at diagnosis: 58
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I used to get panic attacks. This went on as I said for almost a twelve month. I could be anywhere or just answering the phone, well I couldn't answer the phone, I couldn't meet anybody I just used to simply just burst into tears for no reason at all, it was a horrible experience I can assure you.

They said it was from when I had the first surgery they said this depression and it was a terrible, you know a terrible period to go through and it went on almost a year and it was, panic attacks are one of the worst.

I never forget one day my wife tried to get me to go out because I wouldn't go out, I didn't want to go out and she got me to go to the supermarket and I was getting on fine and then all of a sudden it just came over me a wave and I had to get out and of course I went to the door to get out and it was one of these emergency exits and I couldn't get out and it was a terrible thing.

It just gradually, gradually went. You know it was strange, I wasn't taking any medication or anything er suddenly it just got less and less and then perhaps I might have a bout perhaps once a month and then it just eventually stopped. Strange.
 

A number of people developed adhesions after surgery and experienced extreme distress in addition to physical pain because they did not understand what was happening to them. One man's adhesions caused a blockage of the bowel which required emergency surgery. One woman had learned to detect the signs of an attack in its early stages and used steroids to prevent it coming on. The majority of people who discussed adhesions felt they should have been warned about them in advance. One woman felt that her consultant had downplayed discussion of adhesions and that this had been unhelpful to her.

One man experienced sexual dysfunction as a result of his surgery and had to seek counselling to help him deal with it. He felt strongly that this risk should have been discussed with him before surgery.

 

He suffered sexual dysfunction after surgery.

He suffered sexual dysfunction after surgery.

Age at interview: 54
Sex: Male
Age at diagnosis: 48
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And there's also another concern which no one explained to me, and no one's ever explained to me or tried to explain and that was the intimacy side, of, and the consequences of having colorectal surgery.

It did affect my, sexual side of my marriage and I had to go and seek, counselling for that and I had to go and seek and get medication to help me perform sex and intercourse.

Although having said that I, I don't really need to use it as often as I did because I'm starting to get back to a reasonable normality. I mean for a man of 54, I'm looking for quality rather than quantity!

But I think there should be more openness from professionals in explaining, cancer. And what the procedure that they're gonna perform on you, involves, what they're gonna take out, what the implications are for the future and what they've done for you. Particularly in my case, the sexual dysfunction.


Donate to healthtalk.org Last reviewed August 2016.
Last updated August 2016.
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