Intimacy Issues After Ostomy Surgery - Am I Alone?

Okay, I'm going to put myself out there with this one. I really miss sex. I know I'm married, but sex with my wife and I has gone the way of the dinosaur. It very rarely happens, I mean I can count on one hand how many times in a year..... I can't help but think it is the ostomy. Every time I try to talk about it, I get the "nothing's wrong" answer, yet nothing changes. I admit that we never had a wild sex life, but since 2005, not so much. I even work out on a regular basis to try to give her something to look at besides my ostomy. Did that sound right? I hope it didn't come out the wrong way. I miss the intimacy and being close and everything that goes with it, emotionally and physically. It just kind of makes me feel like damaged goods.

Does anyone else have problems getting their partners intimate or in the mood since their ostomy surgery? Or is it just me????

Paul

Well, some people react differently to this situation. It's quite possible that she might fear that sex could harm you... you know, mashing that area or something similar. You need to talk about it and reassure her that you are still capable. In my opinion, sex for a young man like yourself less than once weekly will only lead to problems. I'm 51 and can tell you that your drive will diminish some by my age, but it will never go away. So, better talk about it and see what's up. Good luck.

Hi Elsie and Mr. G... well, I can say that while I have been an ostomate... all 5 years of it... I have seen a few relationships go that way and it never ceases to amaze me. Thought if you loved someone... it didn't matter that they got something extra and you didn't. LOL! Ok, sorry I know it's no laughing matter... For obvious reasons... like hurting you... I can understand that. But after the healing is over... the ostomate needs that closeness to let THEM know all is still ok too. Well, I know that's what I was looking for, so I can imagine what it's like for a couple. I was happily single when I got this. I never had much trouble attracting the opposite sex... but I did in the beginning -- till I fixed my head. Found rejection doesn't help with the healing at all either. Now!!! Let me say this... if it's not working out... for whoever, for whatever reason, then one has grown up and the other is stagnant... I have seen them move on and in the end... a few have found the one that wants them in every way, the others were happy to be who they are and stayed single and doing the rounds. So, hang in there... you can fix it... but only if the other one wants to as well. Do what others do, see this as a new and exciting chapter of your life and just get out there and make yourself happy, however you do it. Make sense? Hope so... Good luck... Tara

Hi Paul - I had a similar problem with my ex-partner who, despite staying with me through all my surgery (until recently when I threw him out for other reasons), didn't come near me intimately - about 4 times in 4 years .... I really missed the affection, never mind the sex, but I think that he found that all the surgery I had had was quite a mountain to climb.... I had had surgery to the nether regions, an ileostomy, and a huge hernia - have to wear a huge unsightly corset in order to walk! Altered body image and self-esteem/depression problems by the bucketful, so I'm sure that didn't help the situation either!

I'm aware that this is not the same scenario, but I have now found a new relationship with someone who accepts me for who I am underneath all the medical appliances and drugs that I take and has given me a new lease of life. (See my post in the 'dating' section)

I wish you all the best in trying to sort it out,

Rachel x

Hi Paul, have you ever tried the really small pouches (they look like a cap) for sex? My ET nurse kindly referred to them as the "sex bag". She said that if you/your partner is uncomfortable with the swinging pouch, to try them. They are only good for the duration, as most of us don't have a "movement" during this time unless you are having an extremely high output day. If I remember right, she said they will hold about 2-4 ounces of liquid, so if you are having a good day, you might want to try them. Instead of a pouch, it just looks like you have a round band-aid on your side.

My Ostomy Journey: Ryan | Hollister

Thank you all for the input! I would also like to thank those of you who emailed me instead of posting. I guess I have some things to think through and sort out.......

Hello all
Yes, I find it hard for the other gender to look past the whole bag thing and how you look. Where I live is a small town in Podunk, Montana, and you would think you might find an ostomy here. Lol, looks like I have better luck winning the lotto. You name it, I have been running into it, then told to look on the positive side. What happens? So, if there is an ostomy close by that is having the same issues, would like to hear from you. Also, don't be scared because there are lots of ostomates out there.

Hi, sorry you are having problems. Everyone yearns to be loved. You are not alone. Have you tried seducing her? Maybe try something new....a drive in the dark...go to a secluded spot with a blanket?...... Or light scented candles in the bathroom and draw her a bubble bath, and offer her a foot rub, then a full body rub with those tingly, warming massage oils? A glass of wine would go nicely with either of these......... Maybe, at first you should not try for sex.....maybe just intimacy....maybe cuddling...touching, caressing, tickling? Maybe you could say...you look like you would enjoy a foot rub tonight....keep it casual...until she begins wanting a little bit more each time....who knows? I wish you the best of luck : )

Hey all, my situation is similar to Weewee's, living in a tiny village in the Highlands of Scotland. There is also not much in the way of ostomy totty, pretty much zilch in fact, unless there is some secret ostomy sect kicking around these fair mountains that I'm unaware of, but I doubt that lol.

When I was diagnosed with cancer, I was given less than 6 months to live, so I in turn unromantically dumped my very romantic Italian girlfriend. Basically, I didn't want her to have to go through all the palaver of me dying. To me, it seemed perfectly rational. I had just broken my neck and back, was in a wheelchair, and had been given less than 6 months to live. Unfortunately, she didn't have a say in the matter. I'm still alive and I still kick myself. Doh!!!

Since my operations, I have had a couple of relationships and none of them progressed any further than a few weeks. Mainly due to the fact that they didn't have an ostomy/internal pouch. I mean both girls were really nice girls and aware of my ostomies, and as far as I'm aware, it never really bothered them, but it bothered me in so many different ways.

It bothered me that my toilet needs would be the first thing that pops into my mind every waking second. What if I leak in bed? Smells in the toilet? Little things like that, things that are constantly on my mind and would never in a million years be on hers. Also, having to stick a needle in my prick every time I wanted sex just made it a little more hassle than it's worth.

In the end, I gave both girls the "it's not you, it's me" talk. Damn, I'm 35 years old. You'd think the need to have those kind of conversations were long gone. So yeah, life's a bitch and then you live in the Highlands lol. There is sooo not any ostomy totty here. It's not that I am that concerned about how I look naked or any other real hangups about living with an ostomy. I don't. It's just that I would rather share my life with someone that's on the same wavelength.

Am I being ostomyist?

By the way, the guy from the Highlands, you have a great attitude to life. You're an inspiration. Good work.

Nice one, the guy from Leeds lol. I'm Steve by the way, nice to meet you.

Since I got my colostomy in '08, I have found that sex isn't the way it was before I had it. I have been with my wife for about 19 years, and it wasn't too bad then. I really don't know what happened, but it has not been intimate for a year and a half. We discuss my problem all the time, and she always tells me there is nothing wrong, but I know better. We both need intimacy in our life, but it rarely happens. I believe that not only the bag is a problem, but maybe there is more to the picture that I am not aware of. I can tell that she really isn't interested in having sex with me. Sometimes I feel alone and isolated, and I don't want to feel that way anymore. So I do sympathize with you. Maybe it will be better, but I don't see it in the near future. I hope that your luck will change....

Oh, I so completely understand what you are going through. I'm not married but just ended a seven-year relationship that was a shipwreck to begin with....but it seems my body cannot compare to the unbutchered ladies out there (which is true) and sex with me did not seem to turn his crank anymore. Everyone needs that physical closeness and touch...we all have those desires and needs that must be met. I do hope things are better for you at this point in time....if not, I do hope you challenge the problem with your wife, seek counseling or whatever you must...because you should not continue to live without that basic human need and requirement. Good luck, my friend.

So, I must be dead, then....    I don't remember sex....    How long does one have to go before they qualify as a virgin again?    20 years?    I've got that beat....

It's amazing, isn't it, how such a small area on our body can make such a huge difference to some people when it comes to sex or self-image? I mean, I've always hidden my ostomy well during 'close times,' but not everyone chooses to hide it at all. It depends on your own attitude and the attitude of your partner. Gosh, like I've always said, it wouldn't bother me in the slightest if my mate had an ostomy...I would feel bad that he has one, but as far as sex is concerned, those close times wouldn't trouble me in the tiniest....in fact, sounds strange, but it would make me love him all the more because I would fully understand what he is going through physically and psychologically and therefore, hopefully, I could cater to his emotional needs more effectively.

I miss that loving intimacy and snuggling up to someone at night...even if they grumble at me for putting my cold feet on their legs LOL... I think it's something everyone needs....not the cold feet part lol.... but that human closeness and touch. No one should ever be without it. Personally, I sure don't want to grow old alone, but not much will change unless I can bring myself out of hiding a bit more. Don't do what I do, my sweet friends, don't become a recluse because of fear of intimacy or broken hearts. I can talk the talk...just can't seem to walk the walk. Get out there and find someone....and be happy!! Hugs to all!

There is an old saying "no risk....no gain." I think it's very true (like most old sayings are).
You must "risk" in life... My personal favorite is... "who dares......wins."
A broken heart will mend with time... A broken soul from never risking love will not.

Hi to all, I'm very new to this site so please forgive me if I sound silly. I've had my ileostomy for 7 years next month and since that time I haven't had sex. I have had a couple of partners but have never been able to allow myself to become intimate as much as I really wanted to be. I have also lost other body parts over the years including a hysterectomy when I was 22. Then I lost my bowel and 3 years ago I lost both breasts, so I really feel like damaged goods.... and I don't feel like a woman anymore? I have gotten to the point where I isolate myself most of the time and suffer from depression on and off. I get so lonely sometimes and I just want to curl up in a ball and die. I just wish I could get my head around all of this and meet a beautiful man who would love me for what's inside and not a body that has been totally damaged. I believe there are a lot of selfish and self-absorbed people in the world and they need to open their eyes to what really goes on in the world! Hope this helps. Sad, lonely, and always confused! Take care to all.

I believe there are a lot of selfish and self-absorbed people in the world and they need to open their eyes to what really goes on in the world!!!!"

I agree, Bevck! However, I don't think anyone can truly understand something like this unless they have been there personally. My heart goes out to you. I can imagine how alone you must feel at times, but take heart, there is a nice guy out there for you who will understand you and love you for who you are.

The odd part of this is that I find myself covering up my appliance with one hand when I am going to bed. Like I can really hide it!

As an update to the original thread, I did have a talk with my wife. She did agree to see a counselor, but before I asked her to, I went by myself. She went for one visit and that's all. I guess I'm at a point where I need to make some choices.

Your words are all so very true.    Reading this meant a lot.    I do okay alone but it's just not the way I want to live the rest of my life... so it's time I take a chance again.

Hi Bevck! I'm so glad to meet you and happy you are in our group here! I feel terrible for what you have been through, dear!! Elzie is right, there is a man out there, MANY in fact, who will LOVE you and will want to be with you........those are the men who will be worthy of your attention and your company and friendship. I understand the occasional depression, as most of us do, each for our own reasons. ((Hug)) I hope you are happy and well! We're here for you! Look forward to more of your postings, let us know how you're doing!

Hi, I'm new to this but need to vent a little. I've been an ostomate for nearly 10 years now and have only had 1 sexual partner, who completely destroyed me in every way possible. I went out with this guy for about 8 weeks and had sex maybe 5 times? He always told me it didn't bother him that I had a bag hanging off my gut (his words)! Anyway, it got to the point that I really didn't believe him and felt very uneasy and with very good reason, so I told him that I didn't want to continue the relationship and walked away. He then harassed me, called me horrible names, etc!! Then about 2 weeks later, I went to our local pub where I would go and just talk to people. When I walked inside, 2 males walked up to me and said, "You're the woman with the shit bag, aren't you?" Well, I was completely shocked by what they said to me and walked off and went outside to have a smoke and was very upset. Then I looked over at a wall and saw a picture of me with a bag pinned to it saying, "This bitch has a bag!" This scumbag had taken a picture out of my purse and he took it down to our local hotel and put it on the wall with a bag pinned to it for everyone to see. Since that day, which was over 2 years ago, I haven't stepped near a male and don't think I ever will as he destroyed my heart and soul. I'm only 42 years old and think I'm attractive to men, but I have no trust when it comes to anything, but I miss just having a man's arms around me, touching, kissing, and not just the sex side of it all. It's love and acceptance that I need, but I just can't do it. I have men after me a lot, but all I do is tell them where to stick it as I'm still so angry!! How do I change the way I feel about all of this shit in my head? Please give me some advice as I want love and peace in my life again.
Sorry for rambling on, I just needed to get this off my chest.
Kind regards,

Damagedgoods.....

I'm just in a state of shock at reading your post, can't believe what that cruel arsehole mongrel bastard did to you (and that in no way describes what I actually want to call the prick). No wonder you feel like damaged goods but believe me that effwit is the damaged one, and will definitely get his coming to him if karma has anything to do with it.

Have no words of wisdom to offer, just sympathy and horror that this has happened to a fellow ostomate. "Venting" is a good way to start and feel free to do so here.

Don't give up hope, there are good blokes out there, few and far between no doubt, but you may meet one when you least expect it (and definitely look for a new local pub mate).

Take care,
Hugs on way

Jo x

I just wanted to say...I agree with Jo...this guy has problems. And as horrible as he tried to make you feel....he must be a very miserable and sad person inside to act that way. You did nothing to deserve that kind of treatment and he is, as Jo put it....an arsehole for acting that way. If you want to know the truth....there were probably a lot of other people there that thought the exact same thing. You are not "less than" because a part of your body failed you......and don't let any man.....or any person make you feel like you are.

Personally, I think he is "less than".....something very mentally defective about anyone that would act in such a way to try to hurt another person. I find that much more disturbing than anything purely physical.

Hold your head high.....you are better than this guy........he showed what he is.

Shelia

Well, let me first say hi... Let me continue now by saying you are not damaged goods. So first and foremost, I want you to change your name as how we feel about ourselves is how people tend to treat us. It's so fucking sad that this idiot extended his shit to others who have no clue about you or your journey. So for now, forget him and let's focus on you and your journey and how you feel about being an ostomate.

You are not damaged goods. I would like to consider you enriched goods, altered goods, new goods, better than before goods. Anyway, you will meet all kinds and it's sad your first, post-op, happened to be with a jerk.

On this site, you will find many with compassion and understanding that does not come in the real world. We are here to help and advise and assist in the journey.

We are so special and have insight into life that took a difficult journey to possess.

So therefore, come on back out. Men aren't all pricks and you need to start again, slowly but surely, and you will find the compassionate one.

And yes, you are attractive and are so much more than a pouch. - Michael

Oh, you poor thing to have had to go through that - he is the one that is 'damaged' - in the head, and you are well out of it, girl .... It may take you some time to adjust, but you are really attractive and there will be someone out there for you who will see you and not your pouch. Horrific ... so glad you have found us. Get yourself back off to the ER and please let us know how you get on ....
Rach xxxxx

Thank you to you all for your replies, it really means a lot knowing that there are other people out there that understand! Can't say much more as I feel very overwhelmed!

Damaged goods....

He needs a real man to teach him how to be a man or at least an adult. I know I don't know you but I have a request, please consider changing your username, you look like a beautiful complete woman. Why don't you get a picture of him and tape a couple of double A batteries to it? What a wonderful replacement!!! Hee! Hee!!!

Eddie

I would add, have it printed on a t-shirt...with this caption:

"I had to dump him, I was 2 inches from being a lesbian."

That ought to do the trick.... Be sure to wear it to the pub!!!

Hi, I haven't been able to step back inside that pub since that day!! I wish I could but just the thought of it makes me sick to my stomach. I know it's been sometime since this happened to me but it still feels like it was yesterday. I know that I need to move on and live my life but there is always that horrible thought in my mind that I'm going to get very hurt again. How do I move on from this mental torment which never goes away? Even to this day if a man even looks sideways at me I run and keep on running! Sorry, I'm rambling on again... I'm just very confused and I hate how I look and even hate looking at my bag as it still makes me very sad! I know he's not worth a piece of shit and hopefully karma will bite him on the arse one day! But I know in my heart that I will grow to be a very lonely old lady as I know no man will ever accept me for me! I would like to say thanks to all for your kind thoughts....

Regards,

Damagedgoods.....

(((((((((((((((((((((((((((((((((( HUGS TO U ALL)))))))))))))))))))))))))))))))))))

Hey Babe - please at least tell us your first name so we do not have to call you by your site name! Why are you still here - get off to the ER and get yourself treated!!! Rach xxxxx