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Colorectal Cancer

Eating and bowel habit after bowel cancer surgery

After bowel surgery many people experience difficulties getting their eating and bowel habit back to normal. These difficulties may be relatively short lived or they may continue indefinitely. Foods that could be eaten before surgery may now cause severe diarrhoea or constipation. Some people also find that they have less control over their bowels or have to use the toilet repeatedly over a period of hours before their bowel has emptied completely. 

Some people found that their eating and bowel habit returned to normal very quickly after surgery. If they noticed a difference in their bowel habit it was easily managed. There was also no food that consistently upset their digestion as an after effect of their surgery. One woman who was determined to restore her eating and bowel habit explains how she set about it.

 

Explains how she resolved to restore her eating and bowel habit to normal.

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Age at interview: 47
Sex: Female
Age at diagnosis: 38
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But I resolved on Christmas day that my body was going to learn to accept all foods again, that I wasn't going to allow my system to become so used to being without certain foods that I believed that would then create a more, a greater difficulty further down the line.

So, yeah I went through some funny times getting my body to accept foods but I can eat anything that I want now, I have been able to for a considerable time.

Well there were days that you were back on the loo more frequently than you want to be. There'd be other periods of time that you became all sort of constipated that just felt as though your insides were all blowing up because you couldn't pass. And it would be swings and roundabouts going from one, one reaction to the other.

But I am so grateful that I have my health back and that I am bringing up my children. If I have the irritation of having to go two or three times one morning because of something I've eaten the day before or if I'm uncomfortable for a couple of days because I'm constipated.

If, if I've got to put up with minor inconveniences because of something that I've eaten the day before, so be it. It's not really that hugely inconvenient to my life, it doesn't stop me going out that day, it doesn't stop me getting on with my business and enjoying my life. My quality of life is far greater than, than worrying about some irritations of the bowel habit.
 

However, many people we talked to reported considerable difficulty with their eating and bowel habits after surgery and especially after reversal of a stoma. One man describes the 'vicious' attacks of diarrhoea he suffered after his ileostomy was reversed. 

 

Talks about the attacks of diarrhoea he experienced after his ileostomy was reversed.

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Age at interview: 70
Sex: Male
Age at diagnosis: 68
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It was one of the things that wasn't explained in great detail to me, how horrendous I think is the word, things could be. It wasn't explained that you would get vicious attacks of diarrhoea, at fairly frequent intervals it was, to start off with it was sort of every six or seven days, I'd get this violent attack of diarrhoea and I would go to the toilet probably ten, fifteen, twenty times in, in the day or usually during the night.

And my tail end was decidedly sore, couldn't sit, couldn't lie on my back, it was, it was very painful. But it was over and done with and then I was alright for the next few days.

How long, how long did this period of adjustment last?

This period of adjustment lasted probably something in the region of about six to nine months. And what was happening was that the incidence of these occurrences got further and further apart, and the severity got less and less.
 

For many, problems with eating and bowel habit were or continue to be a cause of distress and a reminder of their illness. People whose symptoms are persistent or severe often felt that their bowel was ruling their life because it limited their ability to work, to travel, to socialise, and generally to feel confident and fully recovered. One man explains how his unpredictable bowel habit made it impossible for him to remain in his job. Another man felt he could not return to work as a cab driver because he could not control the foul wind that he now suffers from. A woman who suffers from severe constipation describes her diet and how her bowel habit poses problems when she travels.

 

Describes her difficulties with diet and bowel habit.

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Age at interview: 56
Sex: Female
Age at diagnosis: 53
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What was difficult was that since the operation I've got a lot of problem with my bowel habit. It's changed all the time, it goes from diarrhoea to constipation and that really prevents me from getting on with my social life.

On the days I feel well I feel I want to get on and do everything that is, that's possible and then there are times I would be really down, I don't know if I should eat or should not eat er because it just distressed me a lot.

I'm a person who loves travelling and that's very difficult now and I feel that if I'm going, if I'm planning to go somewhere the best way I can deal with this I do not eat anything for hours. I just stay on fluids so as not to upset my bowel or make it work. It doesn't work in one go.

When the bowel works it sort of starts to work, it starts with a lot of problems inside, a lot of contractions and the wind building up, a feeling of bloatedness and er it would take about three, four hours before it actually works properly when it does.

And therefore I cannot be out and about in that kind of a situation. So it really has curtailed my social life and I feel I'm just happiest being at home because then I've got the toilet there and I can just er be comfortable.
 
 

Explains how his unpredictable bowel habit made it difficult to cope with his job.

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Age at interview: 52
Sex: Male
Age at diagnosis: 45
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As my job required me to travel abroad at short notice some of the fights I had to take were early morning flights, roughly at 9 am which means I have to wake up at 4 am and finish off with my bowel problems which sometimes I can cope with and there are days I cannot cope and I have had to miss flights.

Usually the company was pretty fair in allowing me to take later flights to cope with my bowel problems but with cost cutting which happens with almost all companies these days the cheaper flights seemed to be early mornings and this resulted in me having to battle with my bowel problem versus my job commitments and finally I had to retire from my job for this reason last year.

And now I am retired and seem to cope with my bowel problems fairly well because I do not have any rigid programmes in terms of having to go to the toilet in the mornings because I have to otherwise do due to a full time job.
 
 

She needs a very high fibre diet that is difficult to maintain away from home.

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Age at interview: 54
Sex: Female
Age at diagnosis: 52
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I have, I have, I am on a very, very high fibre diet which does bring a few problems obviously. I have, I've had to go on a high fibre diet in order to get off laxatives. Its taken me an awfully long time, I was taking three different types of laxatives to begin with and obviously your bowel gets used to this and really it took me over two years to completely come off the laxatives.

And even now I still occasionally have to take a fybogel and that is with an awful lot of fibre. I have to have All Bran, high fibre bread, I have lots of fruit and vegetables. I never eat white bread, I don't have cakes or any of the things that I used to be able to eat, which I don't find a problem. That's the way I am you know, I just accept it. It's, it's a bit of a problem if I go away. It's alright if you're self-catering but if you're staying in a hotel or whatever and you can't get those foods then obviously you know it is a problem for me.
 

Many of the people we interviewed said they were offered little or no advice about eating and bowel habit before or after surgery and were unprepared for what they had to face. Others said they had unrealistic expectations of how long it would take to re-establish satisfactory eating and bowel habits because no one had discussed the matter with them. Some people were offered contradictory advice by different health professionals. NICE - National Institute for Health and Care Excellence has produced guidelines which advise that all patients should now be given information on managing the effects of the treatment on their bowel function.

One woman explains how difficult she found it to get sound advice after her ileostomy was reversed. Another woman who is a vegetarian and needed advice on how to raise her calorie intake without eating too much fibre did receive useful advice from a dietician.

 

She didn't understand that the change in her bowel habit might be permanent.

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Age at interview: 56
Sex: Female
Age at diagnosis: 53
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I think I probably needed to know more about what to expect after the operation, that your bowel wouldn't work in the way that a normal bowel works, which I think I was expecting it to once the reversal was done.

I think I expected it very much to work in the way it did but obviously it cannot because if a certain portion of the bowel has been removed er it's only with time I learned to understand that I cannot expect it and it can never be the same.

I was referred to the nutritionist in the hospital who tried very hard to see what would help me. We kept a record of what I was eating and drinking and how my bowel worked for about six to eight weeks but er I felt that nothing helped me.

I still don't know what's good for me, I still cannot er decide. I can't say "Oh if I keep to such a diet my bowel would work properly and I could just get on with my life but it doesn't.
 
 

Explains her difficulty in getting sound advice about diet after her ileostomy was reversed.

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Age at interview: 54
Sex: Female
Age at diagnosis: 47
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I think because the bowel had been out of action for nine months didn't help um, so consequently everything I ate I was awake night and day, night and day because everything I ate just went straight through me.

So you had constant diarrhoea?

Constant diarrhoea for, constant diarrhoea for at least a week, and it was absolutely dreadful. I just cannot explain, I was in tears night and day, and I just wished they'd never reversed it.

One nurse told me, "Well just eat what you want." Another one told me "Well I'm sure that if that, because you've had the bowel problem, you should be on a high fibre diet." The dietician didn't even know. And I thought where am I going? It was quite frightening.

The only way that I resolved that was having spoken eventually to, to this stoma nurse, or the stoma sister and she said "Just take things steadily, don't eat too much fruit, don't eat anything that's too high fibre because everything, obviously too high fibre is just gonna go straight through you. You're just going to have to be very careful. Start to eat certain things. If they don't work leave them alone for a little while and then reintroduce them."

And that was the only way that I got this to, and also the muscle obviously had to learn, all the muscles had to learn that, you know, there had to be some control there and because of not having a rectum it had to be the muscles. I had to get the muscles to work, to tighten up, to keep the control.
 
 

She needed advice about how to adapt her vegetarian diet after surgery.

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Age at interview: 53
Sex: Female
Age at diagnosis: 39
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I would say that the legacy of my bowel cancer and cancer of the rectum is that I needed help with what to eat and probably the most difficult thing for me, through all of this, was eating in the early days when I was home. By early days I mean in the months afterwards because I'm a non-meat eater the food that I rely on, the food that I eat is high in fibre and I really needed lower fibre and perhaps higher calorie.

And of course when you're shopping everything is aimed at being high fibre and low calorie, but really I needed the reverse.

And I, I then went to a dietician who helped me to beef-up my meals without making them higher in, in quantity and volume, it was just worth more. And she gave me several ideas for how I could beef-up my meals.

One example  which was so simple and so effective  I in fact, if I were having milk on cereals was to add powdered milk to my milk so that meant that I didn't have to actually have an intake of the higher quantity of milk, but what I was taking in was of a higher value and it was worth more. So, that was one way, and if I was having a yoghurt, I would add some powdered milk to that, mix it in and it didn't taste at all, and it wasn't difficult.

When people expressed an interest in meeting other colorectal cancer patients it was often tied to wanting to know how they coped with their eating and bowel habit after surgery.

 

She wishes she could discuss diet and bowel habit with other colon cancer patients.

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Age at interview: 56
Sex: Female
Age at diagnosis: 53
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I'm still very desperate to be part of a support group which the Colon Cancer Concern is now in the process of trying to set up a group. I've been to several sort of groups where there it's for people with cancer or who have had cancer but I feel that it was not colon cancer.

And each part of the body is of course different. Everything is sort of difficult, painful, hard but then what I would like is to talk to other people about what they are going through after the operation. What they have taken that's helping them with their bowel movement and to be able to exchange ideas really and I think that is very important.

I would like to see more, like to see support groups for bowel cancer set up in different areas so that people can go there and get the information or as a group they could then er seek some sort of advice or information.
 

For more information on diet and bowel cancer see national cancer and bowel cancer organisations listed in our resources section.

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Last reviewed August 2016.

Last updated August 2016.

 

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