Intimacy and sexual life living with colorectal cancer

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?

Sure,
https://www.nccn.org/patients/guidelines/content/PDF/rectal-patient.pdf
.
https://www.ostomy.org/wp-content/uploads/2018/03/Intimacy-After-Ostomy-Surgery-Guide.pdf

I found another article when I was researching bag covers and can't locate it at the moment.
If I find it I will add to thread, but it might have been a marketing site as it was discussing bags with charcoals filters to reduce or eliminate odor when traveling/sexual intimacy

I agree, although I have not had the same medical issues as you,
I have cuddled and I have masturbated my husband too so that he could have a release.
But even that, most of the time I don't feel good, due to pain, gas, nausea, diarrhea or consipation and I have been forced into menopause too on top of all of that. So, I am dealing with vaginal dryness and hot flashes too.

Adding menopause to the bargain is no fun. I myself have been menopausal for only about a year now.

For the vaginal dryness, there are some solutions. There is a thread about it in Breast Cancer Support Group: https://connect.mayoclinic.org/discussion/vaginal-dryness-solutions/.
Isdin has an non hormonal vaginal moisturizer called Woman ISDIN (R) Vaginal Moisturizer. You apply one monodose 3 times a week, preferably on alternating days.
Premarin Vaginal Cream is conjugated estrogens and helps make the vaginal tissue more elastic. Check with your doctor if it's an option for you.
Outside of the US, you can ask your doctor if tibolone (in Mexico, it's sold under the brand Livial and some generic brands) is an option in your case.

Let's Talk Menopause is a great place to go to for information about and support with menopause. They hold monthly free webinars. https://www.letstalkmenopause.org/. They even have a podcast called "Hello Menopause!". I've never listened to the podcast, but I have attended various webinars.

Where to start........ 🙂

Due to menopause I had severe hot flashes and night sweats even before my LAR and started using an estrogen patch and progesterone. This fixed it for me. No vaginal dryness before my LAR.

It took about a month after my LAR and temporary ileostomy to feel healed enough to even contemplate returning to a sex life. At the same time, I started into a six month course of chemo which did bring on additional adverse side effects: mucous membrane deterioration which led to external sores and skin splitting on the labia and perineum, vaginal dryness and split lips and mouth sores. At this point I saw an Oncology Gynecologist who prescribed Clobetasol steroid cream for the sores down below; Vagifem estrogen inserts; and then Premarin estrogen cream once the sores had healed. Over time, all of this worked for me. However, I did suffer from vaginal dryness, burning during penetration, skin splitting in some positions (experimentation required......) and the mental hurdle of reluctance given the pain of things going wrong. We laughed alot, cried a bit, and just plain snuggled more than usual, but we mackled our way through. A year after the end of chemo, I'm still using all these prescriptions on a regular basis - the estrogen, progesterone, vagifem inserts, premarin external estrogen cream. The clobetasol cream I keep around just incase.......

Now. About that bag......... I never did get the hang of properly fitting the flange around the stoma. The whole standing in the bathroom, looking in the mirror and trying to work 'backwards' cutting it to fit thing eluded me. SO, bless him, my partner offered to take on that role. Every 4-6 days for 18 months I got to lay comfortably on the bed while he did the work of fitting the new flange. It made my life SO much easier, made the whole process much more relaxed for me, AND he was pretty good at it - only 2 leaks in 18 months! The thought of this may gross you and/or your partner out - wouldn't blame you - I really fought it in the beginning. For us, in the end, it helped him be much more empathetic and supportive of what I was going through. No me hiding away in the bathroom to deal with it.

Finally, one of my best finds was on Etsy. Helinka Carr of Unspoken Rosebud makes LOVELY ostomy bag covers and wraps. Varying widths and styles, many colours, some with lace. These were a godsend for me - I felt comfortable walking around naked and being intimate - no flapping bag. Thank you Helinka!

Thanks, Terri @terrihodges , for sharing your experience with us and for the useful information on meds (which of course we should always consult with our HCP).
It's been 6 weeks since I left the hospital and almost 7 since I had my coloanal anastomosis and almost 8 since my Turnbull-Cutait pullthrough and vaginal flap. I yearn to have sexual relations, but my anus still hurts and I think there is still some inflamation in my vagina, so the most I've been able to do is to masturbate my husband, cuddle and have my husband masturbate me (but not inside) with little satisfaction last week-end. Part of the reason for the little satisfaction was that I could not keep out of my mind the fear of gases or even feces escaping while being intimate.

Luckily for me, my husband too is quite understanding. He too took up an unsavory task. While at the hospital, in order not to be calling the nurse all the time, he would sometimes clean me up and change the bed protector, and he kept doing it at home when I was not able to clean myself up quite properly, even with the bidet, because of bulge on my anus. He never complained; when I apologized, he shushed me. But, as in the case of your husband, Terri, it helped him understand what I was going through, have an inkling of what I was feeling, be super supportive and empathetic.

He is very patient with retaking our intimate life at the pace I feel comfortable with.

So happy to hear that you also have a supportive partner 🙂 It can make all the difference.
I'm afraid that 'escaping things' is something that does happen from time to time. I thought I had left all that behind (😂) when my son grew out of diapers, but sadly, it's back! Being free from pain is HUGE in terms of being able to relax, and that comes with time. There's nothing for the other stuff but a good sense of humour and wet wipes beside the bed........ Control does improve with time, but it's so individual. As my partner once quipped, "if you want to play in the sandbox, you've got to be prepared to get dirty!" And so it goes. The power of mind over matter is incredible 👍

Thanks for the encouraging comments and the touch of humor.
Putting away the fears of what might happen. The powe of mind over matter. I'll think of that next time.

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.

@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.