Some kinds of cancer treatment, like surgery or radiotherapy to the stomach or bowels, left people with long-term effects relating to their digestion. The bowel symptoms varied, but included diarrhoea, incontinence, flatulence (wind) and constipation. These sometimes got better with time, but for some of the people we spoke to, these changes to their bowel were more permanent. A 27 year old woman living beyond cervical cancer described how she now suffers with diarrhoea and incontinence, but accepts these changes to her life as her ‘new normal’ as a result of the treatment she received.
Physically I did struggle a bit because of the side effects and I did suffer and I do suffer now slightly with my bowel because of how it was destroyed in treatment. So embarrassing questions really like, ‘Does that get better?’ And now all my friends know about it because if they didn’t I’d be very embarrassed, so I make a kind of a joke of that side of things, but people do understand, but it would have been nice to be able to speak to somebody who could say, ‘This is my normal’, or, ‘This is how its gonna be’, just to know that you’re not abnormal, that this is a result of the treatment. So yeah I think I would have liked to have spoken to somebody about that.
Right, thank you. There is one thing, is there anything now that you can’t do that you were able to do before, any activity or anything?
No, nothing. In the beginning I was afraid to because of my bowel and I would always be looking where the nearest toilet was, or if I’d be on a course for a day I would think I can’t go because what if I have to run out of the course. But I’ve actually learnt to live with that and I do tell most people, so it’s not sort of an issue, and if I’m out for the day. I think psychologically I can cope with it a lot better now, so physically it doesn’t affect me so badly for some reason. So that would be the only thing that would be a long term effect on me I think but it’s something that I have dealt with and can deal with and it doesn’t affect anything I do anymore. And nothing else is affected, I can do anything.
The problems with bowels is that diarrhoea?
Yeah, and an urgency, if I need to go I don’t have a choice, I can’t stop it unfortunately. But I can, you know, I still have accidents, sometimes I don’t always make the toilet but I know how to deal with it. Mentally it doesn’t upset me anymore. I just know that that’s gonna be a part of my life, it’s a small price to pay.
People who experienced what they described as ‘constant diarrhoea’ took long term medication to control their bowels. Experiencing flatulence in the long-term was another common side effect. Janet, who had colorectal cancer, described how living with ‘half a gut ‘ due to her bowel surgery left her with ‘wind’ and a need to go to the loo quite often. She ‘gets on with it’ and doesn’t feel that it’s anything to be embarrassed about.
Janet is a part-time charity worker and divorced. Ethnic Background: White British.
Well, yeah, I mean you just, you have a lot of wind and you have to go to the loo sometimes quite often. Some people would find that cripplingly embarrassing. Frankly, I don’t, because I figure if people can’t hack it, we’re all human, you know, they’re probably not worth knowing. So I don’t worry about it but I have to say it has got better. I mean there would be a time when if I had a meal at lunchtime or something I’d spend the rest of the afternoon on the loo, whereas it’s more manageable. But you do have slight symptoms, well, sort of typical gut problems, symptoms where you alternate between diarrhoea and constipation, and that’s very, I think that’s very typical with any kind of gut problems, but that’s what I’ve found.
A friend had a non aggressive tumour removed and has the exactly the same problems, you know. And I mean you can let it stop your life or embarrass you horribly or whatever, or you can get on with it, you know, and as far as I’m concerned, I mean if people aren’t bothered by it, and certainly my friends aren’t, and I’m not either.
Even in the long-term, certain foods were more likely than others to trigger a bowel reaction like flatulence or diarrhoea, and it was often a case of trial and error to work out which foods were easier to digest. Marion described how she had to be a ‘bit careful’ with what she eats, as salad, sprouts or cauliflower can ‘wind you terribly’. Having excessive flatulence was a long-term issue that never really went away for people like John, who had colorectal cancer. He also experiences persistent diarrhoea for which he has taken medication for the last seventeen years.
John is retired. He is married with two sons. Ethnic Background: White British.
Now that unfortunately left me then with only one set of muscles to retain bodily fluids etcetera, and because of that I get continuous diarrhoea twenty-four seven, fifty-two weeks of the year, and have to have drugs to control that. And that obviously has an effect on sometimes what we’re able to do or what I physically feel like.
I have to eat very small amounts regularly because I only have half a stomach and the rest was pulled to make extra pipework. So we lead a slightly different lifestyle now, far more, far quieter, far gentler.
I can’t, unfortunately, digest salads and green vegetables, so I have to, I replace the vitamin C by a very good lot of fruit instead, which seems to work. And for most days I can manage with four codeine phosphate a day. Just occasionally, if things get very bad, I may go up to six or even eight just for a day or two days. And I have to make sure that I’m fairly close to a toilet if I need to, although one has learnt, if you like, to use those facilities when they’re available and I always carry some additional drugs with me wherever I go. So those two drugs were responsible for the ability to control the diarrhoea.
So in terms of being able to go out and do things that you used to do before, has having this chronic diarrhoea impacted on your life?
It did initially. And I used to find it quite difficult to get round eighteen holes on the golf course for a little while but I think that that was before I learnt in fact to control it at the input food stage more. I tried to still continue to eat in my old habits and hadn’t learnt to eat small and often.
Eating small and often certainly helps in that direction as well and I have occasionally, occasionally I might well take four pills in the morning before I’m off to the golf course to make sure I’m okay. But now I seem to be able to get round eighteen holes of the golf course.
For Thomas, who also had colorectal cancer, foods like tomatoes or onions still lead to diarrhoea and incontinence. He has found it useful to keep a diary of what triggers his stomach to react so he can keep track of which foods to avoid. Although his bowel problems can sometimes be embarrassing, he finds that he can ‘get on with it’.
Thomas is a retired police officer. He is divorced, with two daughters. Ethnic Background: White British.
The only hitch, actually, was caused by bowel cancer, and unfortunately by the nature of its, and the totally, not incontinence, but I’m not, I have to be very careful of my diet. I effectively kept a diary of food to avoid because that, that’s not so much incontinent but it’s more of a leakage weeping, which is embarrassing if you’re out with a friend or something like that.
Coming out I found of all things, onions for one thing of course. They can have a drastic effect on me, tomatoes, oddly enough, equally... can have a, make me very loose. It’s not painful. It’s embarrassing more than anything. The unfortunate thing is to a certain extent is that sometimes with the ready meals you can buy, the microwave meals, they may change the contents very slightly, not noticeably, but that then can have quite an unpleasant effect on me. So that’s life. You get on with it.
As I say, I’ve never been an epicure. To me food is just a means of getting from one meal to the next. And I’m just as happy with a cheese sandwich as I am with a a a eight ounce steak, although I’d happily eat an eight ounce steak [laughs]. But that’s life and you accept it. It’s got to go on.
So was it your idea to use a diary or was that something that somebody suggested?
One of my daughters suggested it, that I use a diary and keep it going so, and for the first year or more. There’s still one or two I can safely eat and what I do avoid. But, generally speaking, you come to terms with it. As I say, it really is a matter really of embarrassment rather than, particularly if you go to someone’s house for a meal and they’re serving up something which you think, “Oh, no.” But then again, you can generally get around food with it. My family of course know what I can eat and what I can’t eat and most of my friends and, of course, when I go out with my sister for a meal, but then again I still have to select something suitable for myself when I go out with friends for a meal.
Alan (Interview 22) thinks that he may have had some advice about what not to eat around the time he was in hospital, but he thinks he didn’t take in that information as he was feeling quite depressed at the time. He had a neighbour who was living with Crohn’s disease who was able to give him helpful advice about what foods to avoid. Avoiding certain ‘trigger’ foods that led to diarrhoea or flatulence was only one way of dealing with long-term bowel changes. People had to adjust their daily activities due to concerns about suddenly needing the loo. Thomas finds it a bit difficult to go on long journeys, and sometimes wears an incontinence pad in case of an accident. John has also had to think about changing how he does things and is considering giving up golf, which he really enjoys, to do something a bit less strenuous. Marion was advised to try pelvic floor exercises to try and prevent problems with incontinence.
Bowel or stomach surgery meant that some people also had to adjust the manner in which they take their meals. John (Interview 09) had extensive surgery for bowel cancer, and was left with ‘half a stomach’. He, and his wife, have changed their eating habits completely to ‘eat very small and often…and lightly’. They only occasionally go out for dinner in the evening. Claire, who also had colorectal cancer and part of her stomach removed, similarly finds that she has to eat ‘little and often’ as she’s restricted in the amount she can physically eat.
John is retired. He is married with two sons. Ethnic Background: White British.
The diarrhoea is a nuisance, you know, and I can’t eat a good salad anymore or green vegetables, which I used to enjoy very much. And I can’t go out to dinner very often. We don’t go out to dinners in the evening very often.
I have, in fact, just booked to go to a [local county] dinner with a good friend, a neighbour who is chairman of [local district] this year in local government and he’s having an annual dinner in a few weeks time and sent me the invitation hoping that I would go, and we had to give it some thought before we decided to go or not because it’s seven thirty in the evening, by which time we don’t normally eat. Secondly, it’s a four course dinner, which I won’t be able to eat all the dinner, all of it by any means, and we had to pre-select the menu. And I will be very tired by the end of the evening. Fortunately, I’ve still got a dinner jacket and bow tie that I can wear, I think and we will enjoy dressing up and going out for the evening and we’ll be amongst friends.
They’ll probably be surprised to see us there because we don’t do it very often, but I know that [name] my wife enjoys those sorts of functions and so forth and I’ll probably feel uncomfortable for a couple of days afterwards, very tired and maybe my digestive system won’t work properly. So we don’t, so it’s the reason we don’t do it often but we thought, I thought, well, we should just occasionally do things, not give them up altogether otherwise one retracts and goes back inside one, so often one wouldn’t do anything whereas I think you’ve got to push yourself to do things occasionally. So we’re going to push ourselves to do that one.
People who have had bowel surgery can be left with a permanent stoma or ileostomy. This involves surgery to bring the end of the bowel outside the body, and bowel movements empty out into a bag attached to the skin. Brenda described having a stoma as a ‘new way of life’, as instead of going to the toilet she just goes to the bathroom and changes a bag instead. Not everyone felt the same way about living with a permanent stoma. One man who has had a stoma for twelve years following an operation for colorectal cancer said it’s the ‘best thing’ that ever happened to have a permanent stoma. He still travels abroad, goes swimming and does all the things he wants to do. On the other hand, Vic said that having a permanent stoma is the biggest problem with living with the effects of cancer now.
Oh well when we travelled I mean because we did carry on going to Crete, you know, because we just love Crete, we used to still try and go twice a year. It was a bit worrying but I mean I used to have to be very, very careful what I ate the day before, make sure I went to the loo just before I got on the plane. We used to get to the airport very, very early. I actually even had a letter from my doctor explaining and so that we could get a seat somewhere with plenty of leg room because being, that's another problem you see, being 6 ft 3 there used to be a bit of a problem, but we used to manage to get quite good seats so that I had a bit of leg room, and as I say, I had to take my pads and all that sort of thing with me, but no problem.
Did you ever think I'm not going to be able to travel anymore?
No, no no, as I said, there again I used to think positive about it. No I didn't even bother to think about it, you know. As I said it was a little bit of a nuisance, especially if you've been to any of the Greek islands, have you, but they're a bit basic aren't they, but it was alright, we got by anyway, no problems.
Did you feel that that problem with controlling your bowels changed the way you thought about yourself, did it change your self-image at all?
No I don't think so, it was just, as I said, there again it was a ruddy nuisance. I had to take, oh when I say I had no medication, the only thing they did prescribe for me was Imodium tablets, and I used to sort of dose myself up with those things like, you know, if I was, so if we were going on holiday I'd make sure I took sort of more of those than normal. But no, no, no I still carried on going out. I mean I think I know where every loo is in the county, which one has to, you know. You know where every toilet is. In fact people who've got colostomies or ileostomies etc. there is a key that you can get and it's called a radar key. And as you probably know, every town they've all got toilets for the disabled and you can get this key from your local council offices and it opens every disabled toilet in the British Isles.
It was common for people living with a stoma to worry about having accidents or leakages from their stoma. A man living five years after colorectal cancer described how he had to leave his job in the building trade as the strain of lifting heavy items caused his stoma to leak. Another woman who has a stoma described how she had worries about having an accident and had dreaded attending her niece’s wedding. Needing to change their stoma bag and finding somewhere to do it was not always easy when out and about. People found it helpful to have a radar key which enabled them to use any disabled toilet in the UK.
I used to go out quite a lot more socially than what I do now. I mean I hardly, unless it’s with the group I mean I don’t go out socially at all.
Is that because you don’t feel well enough?
No I think it’s more to do with the stoma
Because, like, I mean obviously I’ve had a lot of accidents with it and even now I still do. I mean and I think, like, when we have the Christmas lunch … I’m always frightened that the bag is going to come off and, because it has happened, and that does prevent me, like when I know it’s a social evening, like, eating, a few drinks, I mean obviously I don’t drink that much now, but I can’t do it because I’ve got the fear of the bag coming off. So I think that basically is what’s stopped me from going out socially.
Like my niece got married in May and I dreaded it, as much as I was looking forward to it because she’s my Goddaughter I was dreading it because I thought I bet this will go wrong, I bet that’ll go wrong, I’ve always got that fear.
Is that because of the stoma?
Did you go to the wedding?
Was it okay?
Yeah I thoroughly enjoyed it, you see but I didn’t eat anything and I didn’t obviously have that much to drink. I mean I had to drink because it was a boiling hot day but I was just sipping water you see, whereas I do, I used to like a drink when I went out. But I mean I now, you know, I’m frightened in case of an accident.
A few people we spoke to said that having a stoma made them feel unclean. One woman uses colonic irrigation every morning. She says it gives her “24 hours of cleanliness” and she feels in control which enables her to carry on with her life.
Having extra support, such as a good stoma nurse or membership with the Ileostomy Association, helped people feel more confident when living with a stoma. Having extra support from family and loved ones also helped, as living with a stoma affected people’s self-image, and sometimes how they felt about their sex life.
It certainly changed my self-image for those 3 or 4 years, certainly. I was very self-conscious, all the time, what I was wearing, how I looked and whether the bag would blow up, but my husband was absolutely incredible. As far as our intimate relationship goes he wasn't concerned, I was, I was the one who was concerned all the time. So it did add the stress to our intimate relationship at the time, it certainly did, not from him but from me.