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sexual life after rectal cancer

keila7692
Posts: 4
Joined: Dec 2010

I need your advice/recommendations/referrals, anything that could help me with the following:
I had rectal cancer and went through radiation, chemo, surgery to remove my rectum and J-pouch done, temporary ileostomy, reversal, and consequently all-the-time bowel movements problems. As a consequence of the radiation i went through menopause at my 32 years of age, my vagina basically shrink and i had to do "treatment" to wide it again, etc. After all these, i have not been able to enjoy sex again. There are certain positions i can not do again because they are uncomfortable, i do no reach orgasms anymore, as well as I have not much desire anymore. Of course this is the cause of tension and problems with my boyfriend.
Have any of you gone through the same? What do you recommend? any therapist? Any advice will be welcomed.

One more thing. If any of you had gone through the same surgeries, were you able to bulk your stools, are your bowel movements regular? I am asking these because I go to the bathroom many, many times a day that is frustrating. I have accidents often, my stool is most of the time soft which makes harder to control it, etc.
Any advice?

sorry for being so straight forward/direct and open but this is the only way to explain and obtain information from you guys.

Thanks again. Look forward to your responses.

Keila

msccolon's picture
msccolon
Posts: 1956
Joined: Oct 2004

I wanted to welcome you, even though I probably can't help you much. I was diagnosed with stage IIIB colon cancer back in 2004 and have dealt with multiple recurrences since, with multiple surgeries, the latest was a HIPEC with cytoreductive surgery in 2009 which resulted in multiple infections and mucho adhesions, etc. I am dealing with problems with pain with my bowel movements and can certainly imagine that affects our desire to have sex. This subject has been touched upon a few times on this board, so I am sure somebody will post with some info that can help you. I know of one member, KathiM, who has had the J-pouch procedure and can probably help you with bowel issues; she's a tough warrior and is very pleased with her new plumbing!
I have the opposite problem regarding firmness of stool; loose and easy is desireable in cutting down on my pain. I take Miralax daily to soften my stool, and was told to use Citrucel but I find Citrucel bulks up my stool and causes more pain. Perhaps this can help you in firming up your stool. I do go multiple times a day, but not uncomfortably so, and rarely do I have accidents.
I am sure you will get some other posters in the morning that will be able to help you. I just wanted to welcome you to the board and let you know that NOTHING is sacred here, ask all the questions you want! We've breached just about every subject possible, that's one of the great things about this board. I hope you find help soon!
mary

nudgie's picture
nudgie
Posts: 1483
Joined: Sep 2006

and welcome. It saddens me to hear what you have already gone through at such a young age. I was DX at 42 and now I am 46. Oh to be 30 again, LOL. Oh that's another story in it self.

Now, I will try and help with your current situation.

a) I was DX in July 06 by emergency surgery; began chemo treatments in Aug 06 and finished in Nov 06, so during this time my poor hubby did not receive too much loving; but he was very understanding. I had NO desire for sex during this time.

b) From Nov 06 - Feb 07 - Our sexual relations was still VERY slim due to healing, but there are other ways beside intercourse.

c) February 07 had my final resection surgery which caused a small PE so I had to stop taking the pill, which made my irregular periods return, so having intercourse became very messy so it did not happen too often; constant bleeding. Feb 07 - April 2010

d) Due to irregular periods again, GYN DR recommended ablation, so I had this done in April of 2010 which somewhat gave me a false positive of entering menopause. After surgery, bloodwork indicated I was going through menopause (hot flashes) and did not have ANY desire for sex, so once again hubby was out of luck. But two-three months later, I stopped having the hot flahses and requested I get the blookwork done again, and guess what, I was NOT going through menopause; so I chalked it up to the surgery. Tricked my body.

Here are some thing my hubby and I do to get in the romantic mood:

1) We take one or two trips to the Pocono Mts each year to focus on us
2) We use KY Jelly
3) Cuddling
4) Watching movies

It also helps if your partner is understanding of the entire situation and just caught up in the moment at that particular time. Remember, sex is important in a relationship, but should not be the number 1 item keeping a couple together.

I hope this helped

Lori-S's picture
Lori-S
Posts: 1287
Joined: Sep 2010

Welcome to the boards. I'm sorry that you are having such after effects from treatment. These are not abnormal so you are not alone.

First, I can help with the bowel movement problems by passing on what I have in my arsenal for when I get my reversal done. It's something I'm looking forward to but have to finish my rounds of FOLFOX first. Try these as they are sworn by and some have had great success with the MD Anderson training program. They require some time but, the results are very good once you get things back on track:

This one is very educational so you understand how it all works together and can help you find and correct problems:
http://www2.mdanderson.org/app/pe/index.cfm?pageName=opendoc&docid=28

This one is the actual program that is used by the center to get bowel movements retrained:
http://www.lowrectalcancer.com/PDF%20Files/Bm%203.pdf

Good luck with this and remember to be patient and take your time.

As for the after effects of radiation, unfortunately, I don't have first hand experience and can only reply with what I've learned from others. Have you discussed with your team or OBGYN about possible hormonal deficiencies and what might work for you? This can be very important with both desire and lubrication to help make the experience both desirable and pleasant. OK, so if someone might become offended please stop reading now .... Are you able to acheive orgasm with clitoral stimulation but not with vaginal? If you can acheive clitoral orgasm, I'd lean towars saying that the other problems are a direct result of treatment. If not then you might be dealing with both treatment and anxiety/stress. Both are absolutely normal responses to treatement and what cancer does to our lives. These things may just need more time and some retraining also. Of course you and possiblly your boyfriend speaking with a counselor about the situation would most likely be a very big help. There has got to be a lot of anxiety and tension surrounding all these changes to your body and mind. Cancer claims so much from us and we sometimes need to work extra hard to reclaim some things. Patience is always a big thing. Ask your oncology team for a referral to a counselor that deals with cancer patients.

If I were you I would seek out some answers with your OBGYN and get into counseling to help get through this. Once you get things going in the right direction you will feel so much better. And your boyfriend really needs some professional information so that he can get an understanding of what you are dealing with.

Good luck to you and please keep posting to let us know how you are doing. HUGS

keila7692
Posts: 4
Joined: Dec 2010

LORI,
thanks a lot. Answering your questions i have to tell you that indeed i reach orgasm with clitoral stimulation :) and not the other way.

In my case i have to say that due to the radiation treatment, my vagina (i will be straight forward so if anyone get offended with being up front, do not read this) contracted and had to do therapy to be able to have intercorse again and immediately after i went through menopause. I was prescribed a cream to use twice a week to help with lubrication and restaure the tissues. I use KY.

My boyfriend is great, he has been with me throughout my illness and today, however it is undeniable that it affects both of us.

I started my search for a good counselor as well.

The other thing that affects my mood and libido is pooping. I poop several times a day and have accidents regularly and of course it affects my mood. i get frustrated all the time.
Does any of you did or does anything to bulk or to not go so many times a day?
It is normal according to my surgeon and there is nothing else i can do. I tried different type of diets and I am the number one imodium buyer but does not help much.

Any Advice????

dasspears
Posts: 233
Joined: Feb 2009

Keila,
If you go the anal cancer on this same site, you will see several discussions regarding this very issue. I think the radiation treatments and side effects are similar for rectal and anal cancer.

Debra

KathiM's picture
KathiM
Posts: 8077
Joined: Aug 2005

No additional advice to give...isn't this the GREATEST board?

I, too, suggest you check out the anal cancer board for tips.

My J-pouch took awhile to retrain, but now I will match it against anyone...even full plumbing people....I think that part of it is that I watch what I eat, and when (if I'm going somewhere there is no real toilet, I stick to fluids...).

The biggest thing is time. And, communication.....sooooo important!

Welcome to the semi-colons!

Hugs, Kathi

geotina's picture
geotina
Posts: 2117
Joined: Oct 2009

Welcome to the Board. You sure have been through a lot for someone your age, I'm sorry.

No advise on the stool situation. As far as the vagina situation, if you go to the search part, put in the word dialators, discussions will come up. Some of the ladies have some very good information for you. Some receive dialators sets from their docs that seem to be effective when properly used. Hope this helps.

Take care - Tina

Aud's picture
Aud
Posts: 480
Joined: Oct 2009

Welcome, Keila. I'm sorry this has happened to you and you are so young to have to go through this.
I don't know if the treatment you talked about to widen your vagina was the dilator or subsequent surgery. You might ask your doctors if you would still benefit from the dilator. I did not have the type of surgeries you had but I did have radiation and I know what you're talking about regarding menopause (though I'm at the age where I was due for it anyway!) and the changes with the vagina. I used a dilator as soon as I was able, but after a couple weeks, I observed that the dilator they gave me did not match the size of my partner so I requested the larger one which they gave me. If I remember correctly, I think I had to "work my way up" to that one. (I had my own, discreet way of assessing this; if you want details, if it's information you think you can use, you can pm me.) I used the dilator for a good 6 months and then gradually tapered off so that now, only intercourse. If I need it again, it's on hand.

Also, it became clear early on that my natural lubricant was essentially GONE. Some people use K-Y jelly. I use Astroglide. Recently, a friend of mine told me about "Jo H2O," which is water-based, and she likes that best.

Are the uncomfortable positions due to vaginal discomfort or tightness in your hips/legs? If you have joint tightness, I would recommend gentle stretching. Maybe you can go to a physical therapist or just do them on your own if you're already familiar with stretches. If you have vaginal discomfort....well, some positions cause the penis to penetrate deeper into the vagina. If that's the case, I wonder if there is vaginal shortening? I would definitely talk to your ob-gyn and radiation oncologist about this. I would tell them you need some time to talk with them and explain in detail just what is going on. A good doctor will really listen.

And I can't overemphasize the importance of counseling. I talked with a wonderful woman during my cancer treatment (not directly sexually related) and it was very helpful. I would see a therapist who works with cancer patients and/or a sex therapist. Anything that is going on psychologically will definitely effect our sexual lives/relationships.

After going through surgery, chemo, radiation, and more surgery, AND menopause, of course your sex drive is going to be affected. Consider it temporary. Spend time with your boyfriend without the pressure of having to perform; enjoy each other's company, hold hands, do nice things for each other and yourselves. Spend time together with family and friends; the other people we care about can help support us and reinforce all the good stuff in life.
I also encourage to explore yourself on your own, again, without pressure or high expectations.
I wish you well.
Holding you in the Light.
~Aud

462lt's picture
462lt
Posts: 118
Joined: Jun 2010

I had radiation,chemo and a transanal excision for rectal cancer,the difference is I was already through menopause which does a number on you all on its own. My experience has been one of pain at first with sex,(didn't need a dilator)but I found if you are on top you have more control over your own comfort level and this helped ALOT. After a few months sex is in fact better than it was. JUst don't be rushed and remember that menopause causes all kinds of problems on its own.Hope this helps Laura

Nana b's picture
Nana b
Posts: 3045
Joined: May 2009

All I know is that I am 20 lbs lighter and my husband is 20 pounds heavier....WOW! It's like having sex with a different partner, WOO HOO!

It takes effort to keep the love going strong...... But remember, I'm okay, you're okay!

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