Intimacy and sexual life living with colorectal cancer

Posted by verol65 @verol65, Mar 15 1:03pm

Intimacy and sexual life living with colorectal cancer is not much talked about. So far I have not seen it mentioned anywhere, except in a few article that only state that intimacy and sexual life are often affected by colorectal cancer and move on to another topic without digging in. However, I believe that there are others among you who would welcome the opportunity to talk frankly about this subject that is dismissed more often than not.


In another thread (https://connect.mayoclinic.org/comment/1029381/), @chinoomee mentioned "even if someone doesn’t have a bag or have had resection (recovery) or just chemo med induced diarrhea/gas it definitely interrupts any sexual activity. Well, even constipation can and these are all things we will all experience. I did find a few articles on the ostamates support website and there is also a section in the NCCN patient guide". Maybe Chinoomee could share the links to those articles as a start.

Interested in more discussions like this? Go to the Colorectal Cancer Support Group.

@trishalynn

I certainly appreciate all this well written information. I won't know the staging until my imaging and Pet Scan. It will be May 14th so I am sitting here pondering the outcomes, and yes, the suffering too. I just met a beautiful man who thinks enough of me to go through this with me. I told him I don't have all the information. I am going to wait until I speak with the radiation and oncology Doctors what will be left of me to offer in sensuality. Then let my new partner know so he can make an informed decision to opt out. This is not for every one and we are not living together. And the uncertainty of the unknown. But at my age, that is already uncertain so I'm not dwelling on if I'm going to die, but how long to live and live I will. I just hope I can still have a partner. Wish me luck on this.

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First, sending you good vibes all around. This is not easy stuff to go through, never mind to talk about, and especially with a relatively new romantic partner. Hats off to you both - you'll be exercising your vulnerability muscles like crazy, so sending you lots of positive, emotional energy.
Just a thought - you may wish to have your partner accompany you on your appointments? It may help them feel more included, give you someone to lean on, and allow them to ask their own questions. I recognize this isn't for everyone. Only you know how you feel. Just a suggestion, but trust your own intuition and do what feels best to you. And please keep us posted. We're rooting for you! xo

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@trishalynn

Your story is so inspiring! Thank you for sharing in depth your personal life.
I wish the best for you.

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Best wishes to you too, @trishalynn
Keep us posted on your cancer diagnostic, in another thread, so we can give you support.

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@verol65

It is so important to be honest from the start, @trishalynn , as you are being with your new partner. If he really loves you, intimacy and sexual relations can be worked out to accomodate what your will be feeling physically.

In December of 2022, I had a transanal resection for a low lying pre-cancerous polyp. Then I had radiotherapy + chemotherapy pills early last year because the biopsy had mentioned positive margins, not even stage 1. After the radiotherapy, my husband and I retook our sexual intimacy with him having to be extracareful at first not to get close to my anus or the inner butt cheeks, where my skin had been burnt by the radiotherapy. My nerves were not affected and I could enjoy intercourse as before.

Then I developped a rectovaginal fistula (because of the radiotherapy) that at times made me uncomfortable in my head about having intercourse since I could have some fecal secretion coming out of my vagina. My husband was all relaxed about it, which was encouraging for me and helped me enjoy.

At the end of January this year, I had a two-step Turnbull-Cutait pullthrough with coloanal anastomosis, plus a vaginal flap, to get rid of both the fistula and a newly-appearing polyp facing the fistula. During the surgery, they found out the fistula had grown to touch the sphincter. The pullthrough means I had a total resection of my rectum, sigmoid and mesorectum, a delicate surgery that could affect many nerves. From masturbation, I can tell that the nerves have not been affected, even if it is harder for me to lubricate and orgasm, but this can be because of what goes on in my head. It's hard for me not to think that gases or feces could come out uncontrallably during sex. Also, I still have stitches in my vagina from the vaginal flap, and my husband and I can tell that my vagina feels shorter/smaller. We have not tried penile penetration. When the stitches have fallen, I will probably be able to use dilators. Also, when I am fully healed at the anastomosis, I will be allowed to have pelvic floor therapy. All this should help.
My husband and I are clear that we need to be flexible and slowly work with what is possible with the current state of my body and with the emotional turmoil in my head. We are also clear that probably our sexual intimacy won't be what it was before, but it doesn't mean we can't enjoy the current state of affair and we'll learn to be creative in enjoying our intimacy in other ways.
We'll be celebrating our 30th anniversary in July.

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Your story is so inspiring! Thank you for sharing in depth your personal life.
I wish the best for you.

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@trishalynn

I certainly appreciate all this well written information. I won't know the staging until my imaging and Pet Scan. It will be May 14th so I am sitting here pondering the outcomes, and yes, the suffering too. I just met a beautiful man who thinks enough of me to go through this with me. I told him I don't have all the information. I am going to wait until I speak with the radiation and oncology Doctors what will be left of me to offer in sensuality. Then let my new partner know so he can make an informed decision to opt out. This is not for every one and we are not living together. And the uncertainty of the unknown. But at my age, that is already uncertain so I'm not dwelling on if I'm going to die, but how long to live and live I will. I just hope I can still have a partner. Wish me luck on this.

Jump to this post

It is so important to be honest from the start, @trishalynn , as you are being with your new partner. If he really loves you, intimacy and sexual relations can be worked out to accomodate what your will be feeling physically.

In December of 2022, I had a transanal resection for a low lying pre-cancerous polyp. Then I had radiotherapy + chemotherapy pills early last year because the biopsy had mentioned positive margins, not even stage 1. After the radiotherapy, my husband and I retook our sexual intimacy with him having to be extracareful at first not to get close to my anus or the inner butt cheeks, where my skin had been burnt by the radiotherapy. My nerves were not affected and I could enjoy intercourse as before.

Then I developped a rectovaginal fistula (because of the radiotherapy) that at times made me uncomfortable in my head about having intercourse since I could have some fecal secretion coming out of my vagina. My husband was all relaxed about it, which was encouraging for me and helped me enjoy.

At the end of January this year, I had a two-step Turnbull-Cutait pullthrough with coloanal anastomosis, plus a vaginal flap, to get rid of both the fistula and a newly-appearing polyp facing the fistula. During the surgery, they found out the fistula had grown to touch the sphincter. The pullthrough means I had a total resection of my rectum, sigmoid and mesorectum, a delicate surgery that could affect many nerves. From masturbation, I can tell that the nerves have not been affected, even if it is harder for me to lubricate and orgasm, but this can be because of what goes on in my head. It's hard for me not to think that gases or feces could come out uncontrallably during sex. Also, I still have stitches in my vagina from the vaginal flap, and my husband and I can tell that my vagina feels shorter/smaller. We have not tried penile penetration. When the stitches have fallen, I will probably be able to use dilators. Also, when I am fully healed at the anastomosis, I will be allowed to have pelvic floor therapy. All this should help.
My husband and I are clear that we need to be flexible and slowly work with what is possible with the current state of my body and with the emotional turmoil in my head. We are also clear that probably our sexual intimacy won't be what it was before, but it doesn't mean we can't enjoy the current state of affair and we'll learn to be creative in enjoying our intimacy in other ways.
We'll be celebrating our 30th anniversary in July.

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@verol65

I'm so sorry that you are dealing with a second cancer, @trishalynn ! I hope this new cancer was found early.
How much it will affect your sexual life depends a lot on the treatment you will receive, because this will affect which nerves and how much they will be affected. Don't be coy with your doctors (oncologist, surgeon, whomever you're seeing for this cancer) and do ask right out how and how much it could/will affect your intimacy and sexual life.

Sexuality is not just sex. Sexuality has a biological dimension, a psychological one and a social one. The four holons of sexuality are gender, interpersonal affective bonding, eroticism adn reproductivity.
Now, it is important to keep in mind that intimacy with our partner is not just the physical sexual interaction. The first dimension of intimacy is the emotional one, our feelings for one another and how we express it in words and gestures. The second one is experimental, like the rituals we have as a couple, such as choosing and watching a movie together on Friday night, for example, or making a capucchino for your partner after lunch. The third one is intellectual: sharing some intellectual interest, like learning something new together. It could be taking a dance class together or attending conferences on the universe together, for example. The fourth one is spiritual: the moral values we share. And the last dimension is the physical one, the sexual physical intimacy, which does not have to include penetration if it is uncomfortable. There are also good sexologist out there who can help with this.

The workshop I'm attending grounds itself in mindfulness as a path to work on our intimacy and on our feeling whole as women affected by cancer. At our second session, we did an exercise where we had to experience what a raisin is through each of our five senses: we had to observe it, then touch it, then bring it close to our ear and listen to the noise it makes if we press on it, then smell it, and finally put it in our mouth, first only tasting it on our tongue, then chewing and swallowing it slowly.
The idea is to focus on the pleasant sensations, to observe our judgements, to explore without trying to change anything, but rather simply noting the sensations, thoughts and behaviors. The aim is to EXPERIENCE, to open ourselves to the SENSATIONS, to allow us to FEEL. This helps us to get to know ourselves, to know when and how to apply this.
In short, what this workshop does is to apply mindfulness to our sexuality and intimacy.

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I certainly appreciate all this well written information. I won't know the staging until my imaging and Pet Scan. It will be May 14th so I am sitting here pondering the outcomes, and yes, the suffering too. I just met a beautiful man who thinks enough of me to go through this with me. I told him I don't have all the information. I am going to wait until I speak with the radiation and oncology Doctors what will be left of me to offer in sensuality. Then let my new partner know so he can make an informed decision to opt out. This is not for every one and we are not living together. And the uncertainty of the unknown. But at my age, that is already uncertain so I'm not dwelling on if I'm going to die, but how long to live and live I will. I just hope I can still have a partner. Wish me luck on this.

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@terrihodges

I'm with Colleen. Please keep us posted and yes, please encourage them to expand their considerations beyond breast cancer. I really hope you get something positive from the experience. And them too!

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In my answer to Trish Alynn, I gave a summary of our second session.

They had sent us a survey, which clearly came from attending women with breast cancer exclusively. I did call their attention to that.
They also sent us "homework" for a diary with a set of questions to reflect upon. This was broader and more general. I haven't looked at the set of questions for after the second session yet.
Today's session has been postponed to next week. I'll keep writing posts about my experience with the workshop.

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@trishalynn

I was just diagnosed with rectal cancer on the dentate line. I still have to get staged. My thoughts are on if I will ever enjoy sex again.
I also went through radiation and chemo for nasphyarngeal cancer. It took at least 6 months until my throat felt better. I know it's a different cancer but I hope you feel better soon! I am so afraid of the unknown. Soon I will find out! Hugs

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I'm so sorry that you are dealing with a second cancer, @trishalynn ! I hope this new cancer was found early.
How much it will affect your sexual life depends a lot on the treatment you will receive, because this will affect which nerves and how much they will be affected. Don't be coy with your doctors (oncologist, surgeon, whomever you're seeing for this cancer) and do ask right out how and how much it could/will affect your intimacy and sexual life.

Sexuality is not just sex. Sexuality has a biological dimension, a psychological one and a social one. The four holons of sexuality are gender, interpersonal affective bonding, eroticism adn reproductivity.
Now, it is important to keep in mind that intimacy with our partner is not just the physical sexual interaction. The first dimension of intimacy is the emotional one, our feelings for one another and how we express it in words and gestures. The second one is experimental, like the rituals we have as a couple, such as choosing and watching a movie together on Friday night, for example, or making a capucchino for your partner after lunch. The third one is intellectual: sharing some intellectual interest, like learning something new together. It could be taking a dance class together or attending conferences on the universe together, for example. The fourth one is spiritual: the moral values we share. And the last dimension is the physical one, the sexual physical intimacy, which does not have to include penetration if it is uncomfortable. There are also good sexologist out there who can help with this.

The workshop I'm attending grounds itself in mindfulness as a path to work on our intimacy and on our feeling whole as women affected by cancer. At our second session, we did an exercise where we had to experience what a raisin is through each of our five senses: we had to observe it, then touch it, then bring it close to our ear and listen to the noise it makes if we press on it, then smell it, and finally put it in our mouth, first only tasting it on our tongue, then chewing and swallowing it slowly.
The idea is to focus on the pleasant sensations, to observe our judgements, to explore without trying to change anything, but rather simply noting the sensations, thoughts and behaviors. The aim is to EXPERIENCE, to open ourselves to the SENSATIONS, to allow us to FEEL. This helps us to get to know ourselves, to know when and how to apply this.
In short, what this workshop does is to apply mindfulness to our sexuality and intimacy.

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@verol65

Yesterday I attended the first session of six of a workshop for women who have (had) cancer called "woman in plenitude," centered on intimacy and sexuality. This was only the introductory session where the three psychologist explained where this workshop came from and the program (aims and method). Then the 9 registered participant presented themselves. All the other women had (had) breast cancer. I'm not sure how much it will work for me since the workshop comes out of a hospital center for breast cancer, and even if they are specialized or specializing in psycho-oncology, they don't seem to know much about cancers other than breast cancer. I could notice that both in their reactions to my introducing myself and in the subsequent survey they sent us. I'm going to give them a chance since I've paid for the workshop.

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I'm with Colleen. Please keep us posted and yes, please encourage them to expand their considerations beyond breast cancer. I really hope you get something positive from the experience. And them too!

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@verol65

I'll start.
I had a two-stage Turnbull-Cutait pullthrough with coloanal anastomosis, a form of Low Anterior Resection, at the end of January and beginning of February. I also had a vaginal flap at the same time. I still have pain in the anal/sphincter area due to the surgery trauma and prior radiotherapy.
Before my surgery, I had a very satisfying intimacy and sex life with my husband, but since then, it's been a dry spell. We have hugged, we have spooned, with me being the big spoon because it hurts to feel his erect penis against my butt. I have masturbated him a couple of time; the first time especially I was very uncomfortable because my labia would swell, but since the vaginal flap is still inflamed, there is no way I could stand penetration. That same inflamation even makes me unwilling to masturbate in any way.
The other uncomfortable aspect is that having to go to the bathroom is so unpredictable, particularly with the clustering, that I can't imagine being intimate and having to interrupt whatever caresses we exchange to go to the bathroom over and over.

How has it been for you?

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I was just diagnosed with rectal cancer on the dentate line. I still have to get staged. My thoughts are on if I will ever enjoy sex again.
I also went through radiation and chemo for nasphyarngeal cancer. It took at least 6 months until my throat felt better. I know it's a different cancer but I hope you feel better soon! I am so afraid of the unknown. Soon I will find out! Hugs

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@colleenyoung

@verol65, I'll be interested in what you learn. I also encourage you to use this opportunity to open their eyes to the need to expand their teachings to include the experiences of women with cancers beyond breast cancer. I'm grateful for the advocacy that breast cancer women have made. It's now time to widen the circle.

Thank you for all the support you offer everyone here on Mayo Clinic Connect.

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The workshop sessions are weekly. I'll keep you posted, @colleenyoung , about each session. One of the basis is mindfulness and one of the aims is self-compassion. More at another moment when I have more time.

Indeed, we need to raise awareness that women can suffer from a variety of cancers beyond breast cancer.

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