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Colorectal Cancer

Sexuality and relationships with a stoma

Having a colostomy or ileostomy can profoundly affect your self-image, social confidence, and feelings about your sexuality. While people with stomas can and do have full physical relationships, inhibitions about physical appearance, fears about what might happen to the bag during sex, and ongoing health problems or side effects from other treatments can pose problems. The stress of learning to live with a stoma and difficulties with its daily management can also put a strain on domestic relationships. Many people deal with these problems successfully and continue to live full lives. 

The issue of sex for stoma patients was one that people felt was extremely important but in the majority of cases had not been addressed by any of their health professionals. Only one person said that she had been offered information about sex and stoma by a health professional but she was too ill at the time to be sexually active.

 

She had received information about sex for stoma patients but was too ill to be sexually active.

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Age at interview: 37
Sex: Female
Age at diagnosis: 34
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Has the stoma in any way changed your relationship to your husband?

No, he doesn't bother about it, its probably me more than anybody, but it's a bit more conscious that way you know, sexually it's like, if I'm getting undressed sometimes and he's there I'll probably put my hand over my bag or something like that. But it doesn't bother him at all. That's what I used to do, I don't do it now you know its, its just something that, it probably took me longer to get to grips with that way than what it has him, it's never ever bothered him at all.

Before you had the stoma, did you see a stoma nurse who explained things to you?

Yeah, yeah, she was very good.

Did she explain anything to you about having sex with a stoma?

Yeah, she did say about sex and that with the husband you know and she gave me some leaflets and that on it and you know, you can read them, but she was very, very good. You know but there was so much going on at that point, sex was the last thing on our minds, you know, because it was like' stoma, radiotherapy, surgery, so for a good six months it just wasn't, it wasn't entered into the head, you know, too much was going on to deal with that.
 

One other women had herself raised the subject with a stoma nurse. Many people felt that the failure of health professionals to raise the subject of sex was a problem. One woman, who counsels other cancer patients, believes that while health professionals deal with the basics they often neglect important quality of life issues such as sex. 

All of the people who discussed sex and stoma said they had supportive partners. Many said that it was their partner's positive attitude about their sexual relationship that helped them come to terms with it themselves. One woman, who was diagnosed with bowel cancer after just a year with a new partner, explains how his support helped her overcome her fears for their relationship. For another woman and her husband, resuming their sexual relationship was part of the healing process.

 

Her partner's supportive attitude helped her overcome her fears for their relationship.

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Age at interview: 54
Sex: Female
Age at diagnosis: 47
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And of course another thing that I was concerned about, was it going to affect my relationship? And she said that "Oh don't worry about it, we can get you a nice little sexy little, bag to put over the top, you can buy black lacy ones you know!"

Is that true?

Yes, apparently! A black lacy cover, but...

For the stoma bag?

'Tis for the stoma bag yes. But I didn't actually venture into that! I was very fortunate, my partner was wonderful, and just accepted it, but uh.

Do you think it was harder for you to cope with the physical side of your relationship with the stoma, than for your partner?

Yes, I think so. I think so.

How did you get over that?

I think be, I think because of him really. Because I realised it wasn't a problem to him, so if it wasn't a problem to him, then it shouldn't be a problem to me.
 
 

For this woman and her husband, resuming their sexual relationship was part of the healing process.

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Age at interview: 47
Sex: Female
Age at diagnosis: 38
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Do you have any idea of how your husband felt about your stoma?

He was very good about it he didn't find it difficult to cuddle me we did have intercourse during the time that I had the stoma and he saw it as something that was aiding me to get better as opposed to it being an invasion on my body that he found unpleasant.

Did the stoma nurse or anyone else offer you advice about how to manage the physical side of your marriage with a stoma bag or did you figure it out for yourself?

Pretty much figured it out for myself. The person that was my stoma nurse actually had a permanent stoma herself and she had told me how quickly she had been able, she had so much control that she didn't even need to use a bag, wear a bag all the time.

So I knew that there was this path that I had to go along from something that I found quite abhorrent to begin with to something to deal with and to get along with and I was fortunate it wasn't going to be permanent although there was always that slight chance that to get complete comfort the option would be best to stick with a stoma.

But I was determined to get along with it and try and not treat it as an alien that was just going to constantly upset me.
 

Several people focussed on the psychological impact of a stoma on their sexuality. One man describes how his stoma affected him and reflects on how it might affect others. Another man preferred to avoid sex until his stoma could be reversed. When the reversal proved impossible he had to reconsider the situation.

 

Describes how his stoma affected him psychologically and reflects on how it might affect others.

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Age at interview: 65
Sex: Male
Age at diagnosis: 35
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I think psychologically they don't tell you the effect it can have on you.

What is the effect?

Is, the fact is that when you've got that stoma you feel as though you're a bit unclean, it's a bit unfair for your wife or husband, if ever it, whatever way it is, like sexually to think oh, you must look an awful thing with that bag hanging on you.

It's uh, that is a, I think that is for every person their own individual thing you know. I mean it could be repulsive for the partner I should think. And my wife says it doesn't make any difference to her, whether she's just being kind to me I don't really know but I mean I've only got her opinion on that.

But I should think it must be a horrible thing.

Nobody ever mentions that to you when, when you're having the operation, or had the operation. I think it could be a big thing on a younger person. I mean, I was a bit, well getting more middle-aged I suppose when I had my operation. But a younger person I should think it could be rather "oh I won't get a boyfriend now, I won't get a, nobody will want to see me any more." 

I don't, from what I've learnt from the Association, the Ileostomy Association that isn't the case you, you get partners and a lot of people are happy. But that, that's a thing I can't really make much comment on really apart from myself.
 
 

He preferred to avoid sex until his stoma could be reversed.

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Age at interview: 65
Sex: Male
Age at diagnosis: 64
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Well there's no way that I've been near her since the operation because I feel, it's not dirty, but it's just in the way.

I suppose if I was going to have this for the rest of my life then I'd have to think again but I didn't think it was fair. That's the way I've put it.

She's said nothing but I didn't think it was fair to put her through a situation like that with me with a bag hanging down you know. There's no way that you can get rid of it for a little while either because you never know what's going to happen.

Did you ever ask her if she would be willing to carry on your physical relationship with it?

No.

Or you decided that yourself?

I decided myself. I didn't want to give her an opportunity to refuse because I felt, how can I put it, not embarrassed, that's wrong, I didn't want to put her in a position where she thought she was going to fail me in any way.

She had to cope with my illness which she did very, very well, she was fantastic, she was absolutely marvellous. I don't know what I'd have done without her actually, but to put her through that situation where maybe, maybe she would've said no, so maybe it would've made me feel worse.

So better off not to bring it up, better off just to leave things as they were.
 
 

Having decided to avoid sex until his stoma could be reversed, he had to reconsider when the...

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Age at interview: 65
Sex: Male
Age at diagnosis: 64
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Its not an easy situation because having had to accept the bag again hasn't made, say our sexual life wonderful, but it will be, it'll be OK, we'll have to get round it.

Just, is it, is it because you don't feel happy about it?

That's right.

Or because she doesn't feel happy?

No, it's because I don't feel happy about it, it's me. It is me, because I've discussed it with her and she, she you know, she's quite open about it, but I've discussed it with her and it's me. But I will get round, you know, oh yeah, oh yeah.

Because I'm quite positive in everything but it's just taking time because I'm over the initial disappointment of the operation, but having to cope with the bag, well, having told you that I am very particular, very meticulous it makes life not easy, not easy, but you have to accept it, you know, it's one of those things, so, you know.

No I, I think you know we'll get back on quite an even keel again, yeah, I, I can see that, yeah.
 
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For more about emotional issues see: 'Feelings about stomas'.

Last reviewed August 2016.

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