Struggling with Intimacy After Surgery - Seeking Support

I have to say, I wasn't expecting what was going to happen to my sex life after this surgery. It was a botched surgery, and I ended up with a permanent ileostomy. Prior to surgery, the wife and I were having sex sometimes twice a day. Now, I'm lucky if it's twice in a year. It didn't help matters that my wife had a hysterectomy (not the best speller). I'm wondering if there are other people experiencing the same problem. Don't get me wrong, I love my wife, but I'm tired of being alone in this area. We have no intimacy, and I'm scared that this is going to be the norm for the rest of my life. I'm a hopeless romantic and a gentleman, but I'm scared I'm going to stray. Recently, I have been getting hit on by younger women, and it's actually has me thinking that maybe it wouldn't be so bad to have an affair. I really don't need it for the sex but for the intimacy of being close to a woman. For the last 5 years, it has only been about once a year, and that's only if she's had a few. I'm tired and scared because I love my wife, but this kind of life is not what I signed up for in my aging years. Is there anyone else in the same kind of predicament out there? I'm sorry, but I needed to vent somewhere so I'm not judged too severely. Thanks. John.

Sex/intimacy -- What's that? It's been so long I barely recall what it's like.

Hello John.

Thank you for your post and your honesty about such a difficult subject. The thoughts you have on the subject seem like a natural and instinctive response to a frustrating situation. Whether you act on those thoughts is a matter entirely for you to decide. However, I would urge you to control your instinctive/emoltional response, and think the whole thing through logically. There have been many past posts on here dealing with people who have split-up because of stomas, and this brings its own emotional trauma for those concerned. What is not often discussed, is things like hysterectomies,  and the physical and emotional effects this operation has on the women that undergo the operation. We may feel that having a stoma is an imposition, but it is difficult to imagine what women go through with a hysterectomy. Being as open and honest with your wife as you have with us, could be a useful move, as communication is often the foundation of a good relationship. If you feel you cannot do this face to face, then a mediator or counsellor might be able to facilitate this. You might be surprised at what your wife has to say about the same frustrating situation as you find yourself in!

As for your comment about what you signed up for in aging years. I can speak from experience and tell you that sex is something that you can look forward to missing as you grow old (along with many other physical activities you may have enjoyed in younger years). Relationships may start off as a sexual activity, but if they do not develop into something deeper and more stable, then you are missing out on what maybe the most important part of an older person's relationship (companionship). I will not waffle on about this here, except to say that I worked out what constituted a good relationship by studying people's relationships with their pets. The basics can be found in what I called my 'AIMS FOR TODAY', which I will reproduce below: 

Relationships need working on and these 'aims' seem to offer a reasonable guide, as they appear to work very well for our pets!

You may notice that none of these 'aims' mention 'sex'.

Best wishes

Bill

AIMS FOR TODAY

1. To BE – THERE
2. To be CONSISTENT
3. To be HONEST, GENUINE & SINCERE
4. To be NON-JUDGEMENTAL
5. To LISTEN: Empathetically
6. To keep things CONFIDENTIAL
7. To ENABLE & EMPOWER (DIY process)
8. To show POSITIVE REGARD (unconditional)
9. To show RESPECT for INDIVIDUALITY, FEELING & NEEDS
10. To FOCUS CARING (according to my principles)

What you're going through is more prevalent in our community but not for the rest of the world. There's not going to be a lot of wisdom on this outside our community and while those "other" opportunities might sound interesting, their interest might wane once they understand the modifications to your hull!

I recommend counseling. In this day and age, there's no stigma and given what you've both gone through, no one could blame you for getting some outside guidance.

Dave

It's not clear from your letter, John, whether you're sure it's your ileostomy which has dampened her desires or something to do with her hysterectomy.
I guess you presume it's you - but it might be nice to find out with a conversation. She can't not have noticed that things are not as they used to be.
If she did say it was your op she found difficult, then at least you could ask her if she minded if you found a friend to fulfill your needs.
It is quite possible to love more than one person - the more love you give, the more there is - it's not like money!
I was in a strong relationship but it faded out, possibly connected to my colostomy - and I fully understood that.
Because I understood that given the choice of a person free of these handicaps and one with them, then one would choose the former....I haven't even tried to start a new relationship.
I would hate to lose her for the same reason, even if it ever got started.
Please let us know how you get on, John - I am truly sympathetic about your situation.
I guess there's always masturbation - you can meet such wonderful women that way! :-)

Stories of Living Life to the Fullest from Ostomy Advocates I Hollister

I feel for you, John. You, like most of us, have that ugly thing attached to a decent body, whereas your wife has some internal plumbing issues making her feel ugly too. Don't stray. It's not an option unless there is a mutual agreement. You know straying will end in divorce, and that will be more ugly. Talk to her. Get inside her head or get counseling. Most insurance will pay for it. You've got 5 kids to think about too, but you've got more work ahead of you. Take her out on the bike. Make her feel like a woman. Forget about yourself. Remember, happy wife, happy life. Dig? -Warrior.

Tru dat Mark! 

OK, here we go from a woman's perspective (which seems to be markedly absent so far). For a moment, forget about the ostomy, and think about the hysterectomy. Unless she is on hormone replacement therapy, a hysterectomy messes up all your hormone levels, especially estrogen - you know, the one that makes a woman feel womanly and sexy. So, not only does she now feel (mentally) incomplete and lacking, she now also feels (physically) missing that little estrogen surge when she looks at a man, that normally would trigger the "he's hot, let's get it on" urge that used to be there.

Same thing happens at menopause, to a slightly lesser extent (because the plumbing is still there, just not very active). BUT - and this is the big but - remember that the most important sex organ is your brain, not your gonads. She can and will feel sexy when she feels safe, cherished, and loved. True intimacy of feelings will lead to intimacy in sex, but it takes more work and communication.

It is also possible that the sex act is painful after her hysterectomy. You might need some aids, like lubricant, since her body no longer produces natural lubrication.

When you put it all together, you have two people who both feel scarred and incomplete, who have difficulty expressing those feelings to each other, and each one is thinking the other doesn't care for them anymore because of that. You need to bridge the gap, and talk openly about your feelings on both sides, and express how you still love and cherish each other, and would like to explore how you can get closer again sexually as well. It may very well require a counselor to help you do that, or you could just bite the bullet and sit down and talk to each other frankly and openly.

Good luck to both of you.

Wow, John. You and your wife have both been through life-altering surgery recently. I would have been more surprised if your sex life hadn't been affected. So you need to know that there's nothing wrong with either of you; you're just struggling with how to cope. And you likely didn't get much help from either of your surgeons with that! First of all, the physical: your wife has had her reproductive system surgically assaulted. I would assume that the hormone changes have a lot to do with her change in sex drive. That can be treated, but she will need to talk to her gynecologist about how to do that. Hormone replacement therapy is one option, plenty of lube and slower foreplay is another. Sex may be painful for her; that is something she definitely would need to talk to her gynecologist about. For you, your body is quite different than it used to be too, and I would suggest buying a wrap to wear around your ostomy during sex. It will keep your ostomy from getting in the way, both physically and mentally. The psychological barriers for you both are huge right now too. Most women (myself included) develop body image issues starting the day we are born - impossible not to - we are constantly told whether or not we measure up (advertising is a big offender). So, if surgery takes away what makes us female, we might have a hard time coping with that. You also might have body image issues now that you have an ostomy. Again, a wrap can help somewhat with that. There may be a fear of hurting each other physically, which will cause both of you to avoid sex. The reality is that sex might be different for a while, or maybe permanently, but it doesn't mean that it's over. I would strongly suggest, as others have already, that you find a good counselor (and if the first one isn't good, keep looking for one that you both feel comfortable with!) This is a big issue that might be too big for you to resolve without some help. Just to let you know, I was a counselor for 32 years, and I went for counseling after my surgery. Part of that was about coping with a life-threatening illness, but part of it was about coping with the devastating changes I had been through. It helped a lot; I am really glad I did.
Sex is an important part of a marriage; it makes us feel closer to our partner; I don't recommend giving it up!! Just don't expect that it will be the same as it used to - you both might need to put the training wheels back on for a while. But you need to start with an honest conversation with your wife. She will have a perspective that you need to hear. She probably is as baffled as you are about how to deal with this issue. If you both are willing, think about going to a sex toy shop together. It might feel weird at first, but just try it. I was mid-fifties the first time I went into one of those stores, and yes, it did feel weird. But I was with my husband, so it was OK. There are so many toys and outfits for every level of curiosity. There is bound to be something there to help you get back on track with your sex life. And you might just get a good laugh at some of the stuff you will see there. But I can't stress enough that you both need to start this with a conversation about how you both feel about the change you have both experienced since your surgeries, and how you want to cope with it. Good luck, John. Please let us know if you have been able to resolve this.

I lost my wife two years ago and shortly thereafter I got an ileostomy, so no sex for two years now. I miss having a woman in my life to be next to. I hold myself back because I am self-conscious about the pouch and how a woman would perceive it. You read so many stories of people just backing away from you. I wish women would reply to this post and tell me what their true opinion is regarding this situation.

You wouldn't get a valid response if they did!  LOL

The women on here are completely familiar with your concerns; they're living that life too.  They would tend not to judge lest they be judged themselves.

You can be rejected because you're too tall or too short.  Too fat or too skinny.  The wrong race.  The wrong religion.

You learned to accept that, so why not being rejected for altered plumbing!?!

There's a thousand reasons not to do something.  You just need one really good one to do it!

Go for it!

Dave

I tend to agree with Dave. I often refer to our stomas as "jerk-detectors".

Perhaps some of us should be more grateful to have the opportunity to weed out all the jerks before marriage? 

Ileostomies are vile and revolting. A billion years of brutal evolution has taught others of our kind to flinch at the odor and sight of excrement. Yet we who have ileostomies are required to wear it for life. There's no sugarcoating that. This site only exists for broken people who nobody else will touch with a ten-foot pole. And they profit from it. Think about that for a minute. Sex? Are you kidding me? I can't even get a prostitute to touch me. Don't tell me to "get counseling." That's the most patronizing thing you can say to another human being.

I am not a broken person who nobody else will touch with a ten-foot pole. I'm sorry if that is your experience, but it isn't mine. Yes, I think there are lots of people who are squeamish about ostomies, but there are lots who can rise above it. I'm genuinely sorry if you haven't found someone who can do that. Don't give up. I know several people who have a great marriage (with sex) despite their ostomy. I am one of them.

There are different ways to tell someone to get counseling. One of them is very patronizing - if the undertone suggests that the problem is all in your head, when it obviously isn't. That is prime gaslighting, and it isn't helpful. Another way is to say that maybe counseling can help with the emotions that arise from finding oneself in a bad situation that is not one's fault. Counseling maybe isn't for everyone, but it really helped me. I think I would have sunk into a deep depression without it. nbsp

Broken who? What?

Hello everybody is broken somehow.

Anybody who won't accept anything less than a chiseled Hollywood body has a worse problem than mine. Look at Kirk Douglas in Spartacus; in today's society he's not "masculine" enough.

When I was 21 and had my first ostomy, I'll admit that the amount of sex I got then was on par with a priest from a small parish, but that's what 21 is all about, I suppose.

At 60, I tend towards women who I don't have to drink to appreciate their conversation.

I understand that right now your primary motivation is to vent. Soon you'll be looking for that silver bullet; that one thing that's missing. But you've missed the point.

Your body and your mind have been violated. It's not "fair" today. You've been traumatized. You can't be good for someone else until you figure out how to be good for yourself. There's a new "you" to discover. That's easier done with the help of an interested/disinterested party. Who cares about you but doesn't have a vested interest? A counselor. God knows there's no shame to it. Would you tell a soldier who lost his legs to a bomb that counseling is patronizing?

I don't think so. You have been given a view to be so much more empathic to others (which is very attractive).

But don't tell us we're broken. I can do everything I used to do, but I take more potty stops. But I'm not in pain.

Dave

What's patronizing is not telling somebody about counseling. Counseling can be extremely helpful to anybody who is depressed for any reason. Counseling has been extremely valuable for both my husband and my son, who are (for different reasons) both dealing with depression. And no, neither of them has an ostomy - I'm the ostomate in the household!

However, what IS truly patronizing is going to a very large medical office complex near a hospital. This complex has 3 different buildings with 4 floors each. And NOWHERE in this complex is a bathroom which is in the LEAST bit ostomy-friendly, without a single flat surface anywhere for changing an ostomy pouch - except the floor! I have found better restrooms in truck stops, I swear! And I hate this trend of having a seat with no lid, and not even a tank to lay out your supplies. Just sad!

I am happy that people in wheelchairs are now accommodated in bathrooms. But since when are they the only people who have "issues" with bathroom functions?

Hello Newbie Dana.

I do think that some forms of counselling can be very helpful to some people. However, the 'traditional' approach to counselling can sometimes be very offputting and can seem patronising to those who perhaps have a preconceived idea of what counselling is about. I used to avoid the term 'counselling' altogether and call my approach 'constructive conversations'. This involved teaching and encouraging people to talk to themselves, by way of a structured question and answer approach, whereby they asked the questions, and they gave the answers, and I did nothing more than facilitate the conversations.  Of course, it did not suit everyone, but it did cater for many people who found other types of counselling unacceptable to them. 

As for toilets! don't get me started ,  as I could rant on all day about the lack of decent facilities for ostomates in places like hospitals, where you'd think they would have thought about these sorts of problems. 

The only places I have come across, which are calculated to cater for this are in day centres designed for physically disabled people and, in recognition of this fact, I offer another rhyming verse to capture the sentiment.

THE BEST TOILETS.

The best toilet facilities
for those with disabilities
and other impedimenta
are at your local Day Centre.

Someone somewhere put some thought
into the things that they then bought.
These sort of things that showed they care,
are things that should be everywhere.

The first impressions in this place
is that they planned for ample space
where wheelchairs glide alongside loos
and they can go just where they choose.

Another of their many charms
all loos have got two raising arms
so chairs can get to either side
and things become more dignified.

If you’re in trouble, you can yell
or simply press the panic bell.
All this is just the basic stuff
but for them, that’s not enough.

Hand showers are convenient
for those who are incontinent.
And loos that are a cut above
supply you with some rubber gloves.

Wet-wipes, dry-wipes, towels and soap
raise the tone and give you hope.
Bidet or basin with two taps
works wonders with anal prolapse.

Non-flushables go in a bin
especially there to put them in.
With everywhere so sparkling clean
these are the best I’ve ever seen!

B. Withers 2012

While I’m on the subject of day centres being the best facilities, I should also mention that the staff in these places also make the experience of having any disability much more acceptable than the population beyond their caring compound. Thus, it’s not just about the physical environment which makes life easier, but the helpfulness and flexibility of the staff.

Best wishes

Bill