Seeking advice on intimacy after ileostomy surgery - Need help reviving romance

Jan 01, 2019 11:07 pm

I had Crohn's and got an ileostomy in 2009. I am a 65-year-old man who has been married since 1972. I have read similar stories as mine on this site. My wife is my ostomy nurse (she helps me shave and change my bag). I don't know what I would do without her. But, that is where the love stops. Since the surgery, we have become nothing more than roommates. The sex and romance are gone. It wasn't great for the ten years of battling Crohn's prior to my surgery either. She simply has no interest and will not talk about it. She hasn't looked me in the eyes and told me she loves me in a long time. She doesn't kiss me goodnight anymore. She hasn't asked for sex in twenty years. I have contemplated divorce for many years. Since the surgery, I have a mild case of ED, requiring a 1/4 Viagra, I believe due to nerve damage. The one or two feeble attempts at sex each year end in no orgasm for me. Her attention span for sex is 4-5 minutes. I have read a lot of posts about this subject but no solutions. I am lonely and there are no options left it appears. I guess that if I was single, there would be a glimmer of hope because I could maybe find a lady with an ileostomy and who still wants to get intimate.

Past Member
Jan 02, 2019 2:28 am

With a little respect.

Hi, I've lived this from the other side of the coin.

How would you carry on without the last bit of herself she cares to give to you? Yet you have the audacity to expect even more!

You haven't got a f*n clue how hard it is to care for someone, have you? Day and night when doing so kills that caring person so slowly, yes it does! More so when you are treated like what you clean up.

In Sue's case, she appeared not to care. The outbursts, delirium, etc. were mainly drug-induced, no sexual contact at all, not that normal sex could've been an option.

Deep inside, I so knew she cared and I'm certain she appreciated every day of us being together and whatever I did for her.

Think yourself VERY privileged anyone actually cares about you at all. Not many folk in life have that luxury.

I'd best not say anymore.

Think on this,

Courtesy of a friend and the guy who wrote it..

The one who loves you will never leave you for another because even if there are 100 reasons to give up, he or she will find one reason to hold on.

There is a big difference between a human being and being human. Only a few really understand it.

It's a new year, you've been given a chance at life, try to stop being a selfish twat (pregnant fish!!) and show your wife some appreciation, before someone whose shit bag she doesn't have to change does!


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Jan 02, 2019 7:14 am

Hello mohouser. Thank you for sharing you thoughts and concerns on this very personal subject. I feel that Steve's reply comes across as very blunt and to the point. His statement about 'a little respect', seems to be more directed at your wife than towards you as the rest of his post comes across as giving you little or no respect for your own feelings on the matter. However, although I would not have worded my reply in the same fashion as Steve, that does not mean that I think he is entirely wrong in what he says and means. 

What I do think, is that people with concerns such as yours should feel that they can express those concerns on a site like this with a view to getting support. 

If I had time, I would hope to help you through the process of putting aside your own emotions  and think this through logically from all perspectives. If the process of thinking and talking things through logically works well, then you might eventually come to similar conclusions to that which has been expressed so curtly by Steve. I would therefore urge you to put aside the apparent hostility in his reply and consider the underlying messages, which may well have some relevance to how you might proceed with the relationship with your wife in future. 

I have written many rhyming verses on the subject of 'Caring' and most of them concentrate on the very difficult practical and emotional tasks this entails. The act of physical sex does not necessarily indicate love or caring, as many a prostitute might attest to. What you seem to have is someone who really cares about you in a very practical way. This may have displaced the sexual activity but is no less valuable in terms of an ongoing relationship.  You might want to consider the situation from another perspective: Wanting or demanding sex from someone who doesn't want to participate is almost the definition of rape. If not that, then it can sometimes come across as selfishness or bullying. If you have a definite concept of what you want in terms of the sexual experience, then maybe thinking about it and masterbating at the same time could help relieve the sexual urge.

I am not in favour of coercing someone to participate in activities that they may not enjoy, so for me, it would be a matter of balancing my own wants with the wants and needs of the other person.

I doubt if this will help you that much, but you were asking for comments so I ( and Steve) have obliged in this sense.

Best wishes


Past Member
Jan 02, 2019 9:19 am

Hi. After reading your post, I have a feeling that the problems with your wife and your sex life may very well have nothing to do with your ileostomy at all. You said you were having problems before the ileostomy and your wife is your ostomy nurse, so she is quite familiar with ostomies. Your ostomy is no shock to her any longer. The sort of problem you describe can happen in any marriage and when it does, it may be time for a little couples therapy. She obviously still loves you because she is still there for you. If I were you, I would just forget about the ostomy and work on things from a different angle that doesn't involve the ostomy or ED. I don't think that is where the problem lies. Just a feeling I have...from a woman's point of view. Good luck to you both.

Jan 02, 2019 9:15 pm

Wow....what a way to start the new year!

I guess that's what this site is all about.

(I've never considered it a dating site)

A place for anyone and everyone to write, vent, editorialize, opine, criticize, take criticism and so on.

Anyhoo, to all the members of the "altered plumbing society" best wishes for a safe and healthy 2019 wherever you are.


P.S. Will we get to 20,000 members this year?

Words of Encouragement from Ostomy Advocates I Hollister
Jan 02, 2019 11:26 pm

I'm just glad to be on the right side of the grass!

Jan 04, 2019 12:20 am

Am widowed 67 male with a 4-year colostomy! Very intimate with my live-in girlfriend! Doesn't interfere with our sex life!

ron in mich
Jan 04, 2019 3:14 pm

Hi all, I don't understand why she has to shave you and help you change your appliance after ten years. This amounts to her being a caregiver and home health nurse, unless there are other issues such as eyesight or some handicap.

looking forward
Jan 04, 2019 10:06 pm
Yup, you could have
Jan 05, 2019 12:29 am

She shouldn't have to ask for sex! Why not have some wine and please one another! You both are not getting any younger! Make a move and have fun!

Jan 07, 2019 9:28 pm

It's so good to find someone that is having similar experiences to me.

It would be so good to meet a lady that enjoys sex and doesn't mind this awful stoma bag.

Jan 07, 2019 10:27 pm

I have the same problem but am single. I cannot get an erection, and of course I cannot ejaculate. It is driving me nuts. I lost my partner in May and that didn't help. I have tried Viagra, Levitra and a couple from the internet. Nothing works. If you get an answer and can get back to normal sex functions, let me know. Danny in Utah

Jan 07, 2019 11:12 pm

Danny, go to a urologist for ED! I did! No transplant! Trimix compound! Promise, miracle drug and no pain! Will work!

Jan 08, 2019 12:04 am

Hi Danny, after my surgery nothing worked at all. I eventually had a penile implant fitted. A bit of pain in the beginning but it works really well now.

Be nice to find a lady that will appreciate it though.

Jan 08, 2019 7:33 pm

I have to agree with weirdnewlife. I've been married 40+ years and the decrease in my wife's interest in sex had nothing to do with my pouch. Around 45 (20 years ago) she just lost interest and it was a struggle to find intimacy until I finally gave up. There's little kissing because she then thinks I want sex (which I want anyway, I just don't express it).

If you were having issues prior to your surgery, you'll have them after, too.

Past Member
Jan 09, 2019 4:12 pm

Hi Mohouser, first of all, good for you for asking for help with an issue that feels bigger than you can cope with alone. That took some courage. I can hear the heartbreak in your post, but I have to be honest - you are going to have to decide how hard you want to work on this. First, I wonder why your wife has been looking after your ostomy for 10 years. Perhaps she wants to help, and perhaps you appreciate the help as well as the intimacy, but as long as she sees you as a "patient" who needs help (vulnerable, fragile, childlike) she is never going to see you as a partner, especially a sexual partner. You need to become independent in managing your stoma. You haven't mentioned a reason for her doing this, so I apologize if there is a disability that necessitates it that you haven't mentioned. Second, it sounds like there have been issues around sex before your stoma surgery. I think you are aware of that. Perhaps the stoma has just become a convenient excuse for something that has happened already. If that is the case, you and your wife are not going to be able to solve this yourselves - you will need to speak to a counselor. I don't suggest you start with a sex therapist; you need to do some work on the relationship first. I don't think this is an unusual problem - a long marriage takes a lot of work from both partners, and lots of marriages don't survive. However, you are presenting this as a sexual problem that your wife has, and I think you need to be honest with yourself - it is much more complicated than that. As a married woman with an ostomy, I can attest to the challenges this presents in a marriage. And marriage is hard enough without an extra challenge!! Having an ostomy AND a sex life requires both partners to want it to happen. It requires thinking outside the box - doing things differently than the same old, same old. But then, just being married for a long time and having a sex life requires that too, right? We all need to shake things up a little, otherwise, the boredom kills it. And it is more difficult to maintain a marriage that has no sex. Not impossible, just more difficult. I have had to think outside the box - radiation damage has made sex more difficult for me, but I know how it enriches my marriage, and how close my husband and I feel to each other. I am just not willing to give it up. But we have had to do some serious talking about it, and we both recognize the value of it, so we have had to find ways to be creative. However, this is in the context of a very strong marriage of 32 years, and we both recognize that our strength is talking to one another. Mohouser, I wish you the best of luck. This is not an easy fix - I wish it were. But, it is not impossible either.

Dee H
Jan 09, 2019 9:14 pm

Hi, I hear the same complaint from plenty of men ages 50 and up that don't have ostomies. They complain that their wives don't want sex anymore. Menopause is a main culprit for lack of sex drive. We lose a lot of hormones and we are no longer of childbearing years. Plus, we dry out somewhat. I am not speaking for all women but many. So maybe it's not all because of your ostomy. She is probably very tired also. I have a colostomy but my husband can't keep his hands off me. And going through menopause has made me less interested. But I still love him and we work through it.

Jan 15, 2019 7:07 pm

Widowed for the past 17 years, I've had some problems, but hey, to all of you giving advice, bravo. My marriage was so brief (nine years) that things didn't have time to get stale or boring...when our daughter came along, it was difficult to find time! All the best to you who worked things out...don't think I'll let my friends try to match me up. Better solo, I think.

Feb 09, 2019 6:38 pm

Wow, what a lot of difference in just people, not about ostomy. I wanna say, having children and menopause changes the sex life. And if someone does something to make them feel not worthy or jealous or whatever the problem is, I know I've been single since March 2018. He had nothing really to say except bye! Well, I don't think that most of these issues are really from the ostomy (new stuff). If you were having problems before, then having one isn't going to change the situation... it could make it worse, but not sure why people look at what they shouldn't and think it's always better on the other side of the street! Sorta speak, well thinking being with someone, it's company, help, and having a great friend because you know what they're all about. But most seem to leave and most times are alone and lonely. And sometimes people just stay together. I would think sometimes you're better off just to settle and maybe try to change your ways about sex. It doesn't always have to be intercourse. You know what I mean? It's been awhile for me, but I do what I have to and being alone, I hate it. So I don't know what to say if the relationship was good and everything was about sex. Maybe look at it differently now? Maybe change it up and talk about it and do different stuff and maybe bring stuff in the bedroom? I'm just saying the only thing is leave someone or complain is what people do and think that's the way. Well, I don't think so and you may not find another partner who wants sex all the time, maybe in the beginning, because everything is great and fun in the beginning and then it changes, agreed? I know it's been my experience, but anyway, try to make the best out of the situation. That's my story here... I'm alone and feel no other man would want me now? I hope I made sense and everyone is doing great and doing stuff; different or maybe something you thought you would never do?!!!! Just do it!!! Lol, okay, I think I said enough. And if a partner wants to help another partner with the bag changing, why not? Okay, Happy New Year... New You!!! New life, Victoria.