Seeking advice on sex life after ileostomy surgery

Hello, I'm a new ileostomy patient. I'm a bit frustrated about the death of my sex life. I'm a very happily married man with a beautiful daughter. Since my operation, I have been told in very clear terms that there is going to be no sex for the duration of my bag. Luckily, it's only 6 months until I have my reversal, but when you add the 2 months prior, it seems like a life sentence. I understand her feelings, but I'm just a bit disappointed and sexually frustrated. I love my wife more than anything, and I would never cheat under any circumstance. Has anybody been in a similar position who can offer some advice?

Hi Catt, and welcome to this site. Why don't you check out the forum dealing with intimacy and dating? I recall there was a posting some time ago by a member who lamented the death of her sex life too, only to discover from a ton of responses: "It ain't necessarily so." So, who told you that you could have no sex? I suspect it was not your surgeon. Perhaps, in all due respect, your wife might also read some of these postings. Good luck!

PB

Catt. First of all, I'm sorry your wife has rejected you in this way. So many times our partners, wives, etc. think that this could NEVER happen to them. Illness comes in many ways. I hope you remain understanding when and if she becomes sick. I wish you all the luck and commend you for loving and staying with someone who sounds so selfish. I can assure you that sex is NOT out of the question. Take care and keep us posted.

Hi. Who told you that there would be no sex? There are many aspects to sex without actual intercourse. My partner has problems because of several operations for prostate cancer and I have a colostomy. We satisfy each other without actual intercourse. If you really love each other and are very open, you can use other ways to satisfy each other. Remember, necessity is the mother of invention and you can use other methods to develop a very satisfying sex life without intercourse. Have an open mind. Good luck.

Hi, I don't think for one minute that there is a medical reason for no sex, as I have asked my nursing colleagues as I am now retired and not so up to date, if there would be any physical problems or concerns with a person having sex after an ileostomy or colostomy. Everyone did some checking and all have come back with the same conclusion: it's a big fat NO.

You are completely capable of enjoying the pleasure of intimacy in whatever way you find satisfying.

I think it might be an emotional response from your partner. It may not necessarily be because she is grossed out, she may be concerned that you could be hurt, or the bag could come away.

I would suggest that you sit down and have a very frank conversation and ask her what her concerns are and that you want her honesty and will not take personally anything that she has to say. This should reassure her that you are not just after sex but worried about her concerns or fears.

If she is grossed out or worried about the bag coming loose, then ask her if you could wrap yourself in cling film or Glad Wrap (the clear plastic on a roll that clings to itself). This will hold the bag secure and you could always wear a T-shirt to cover it.

I am confident that if she is reassured that you won't come to any harm, and you wrap/cover up, it won't be on display and she won't be so bothered by it.

Please try to understand her perspective and be patient but honest with each other.

I wish you well and good luck.

Lorraine

My Ostomy Journey: Keyla | Hollister

51-year-old male here. There is a belt you can wear that completely covers the pouch. I have one and it works great. My ileostomy has never had any impact on my sex life, and I am single.

Good luck.

James Matta
Rhode Island

Any particular reason? If you cover up with a wrap or belt, then it's no different from her wearing lingerie. There certainly aren't any medical reasons to stop for that long.

For many of us, our ostomy gave us back our sex life, I know it did for me after 5 years of virtually no intimacy because of my illness.

Wishing you the best!

Have you tried wearing a very small closed-end pouch during sex? I used this when I had my colostomy, it was maybe a quarter of the size of a normal bag. I equated it to putting on a condom (as far as the amount of time it took), very quick. My wife had no issues with it. It almost felt like I had no bag on because it was so small. It did not really get in the way either.

Sorry, but what a self-centered idiot she must be!!!!!!!!
Eddie

James Matta good one, I thought they were only available for women, being flippant I think in our situation my husband would just love to wear his tool belt! So romantic LOL. Lorraine

Wow, this is different! Who told you no sex for 6 months? With a normal pouch, you folded it into 3 sections and used maybe 3-inch x 3-inch tape to cover it. You tell your wife, "I got it there playing, whatever she'll never see the difference." No problem, go for it!

I don't know who told you no sex life until reversal, because it's totally possible after the initial 6-week healing process. I hope this wasn't your wife's decision, because that would not be very loving. Sex is no different - just flip the bag out of the way and go to it!

Joyce

Thanks for all the replies, advice, and concerns. There is definitely no medical reasons or doctors' advice saying I can't. My wife was honest with me from the start and said there will definitely be no sex for the duration of my bag. The thought of my bag and its contents being so close to her during intimacy freaks her out. I have suggested small bags, wraps, coverings, etc., but the thought is still there. I love and respect my wife and can understand her feelings, but I'm also disappointed that she can't find an emotional way around it. I guess there is never a 100% guarantee that it will not leak and thus is the basis of her concerns. She will lend a "hand" without her involvement (me touching or arousing her) occasionally, but it's the emotional and intimacy sharing that I really miss. I'm going to gradually try to increase the cuddles and try for longer kisses in the bedroom and see if I can't get it to lead further, but I will most definitely respect her wishes and feelings. I know she loves me with all her heart and I her likewise, so we will handle whatever challenges that arrive, but I still miss the close contact more than the intercourse.

Well, I admire you immensely. You sound like a wonderful husband, and I know I will be unpopular saying this, but when I wrote my initial response, I thought it would be an emotional reason on your wife's part.
It is so easy to judge, but it is not for any of us to pass judgment. You know your wife and your marriage, and you obviously care for each other.
Just remember that you will be having the reversal, and the old adage "this too will pass".
I don't think any amount of cuddling or kisses will get you near the goal posts, as women are driven in a different way. Meaning, we don't get aroused in the same way as a man. It is in (most women, not all women) our minds, and if she feels so strongly about it, you may just have to take things in hand (pardon the pun).
But I wish you both all the very best for the future.

You are right about the mind thing, Lorraine-Cooper 1960. I talked to my wife about her feelings last night. It turns out it is not the pouch thing like she said the day I got home. She is more trusting of that now. The problem is she thinks of herself as my nurse now. Always worrying whether I'm okay or overdoing it or if my appliance is okay. The changing of the appliance, etc., has well and truly taken away any chance. I said I will be my own nurse then, but she said it wouldn't matter mentally and that I won't be able to until I'm more healed. She said it doesn't matter what we do, her mind won't be in it. I will respect her feelings and will probably understand them one day soon, but considering my appliance only gets changed every 3 days, it makes it very hard. I feel hurt, deeply disappointed, and rejected. I'm still the same person, just with an extra part. I will just retreat into myself for a while and absorb everything, and I'm sure it will get easier to accept over time. Our love can get through anything, but this is a challenging time.

There has been plenty of good advice already. Are you able to do exercise? If you are able to do some sort of physical exercise, you may appear to your wife as not so helpless and prove that the bag will stay on when doing something physical. I still ride surfboards and I have had an ileostomy for 15 years. The stoma never gets hurt and the board is much harder than another person's body.
It's difficult for your wife to get her head around the change, but it's worth trying to look more healthy and physical if you know what I mean.

All the best

Wow, sorry to hear about your frustration concerning your depleted sexual activity since you have the ileostomy. I recommend you read Brenda Elsagher's book: "It's in The Bag and Under the Covers." It is the sharing of personal stories by people with ostomies and their significant others and how they dealt (or chose not to deal) with life with an ostomy. Sorry you are going through this type of rejection when you probably need more feelings of acceptance than ever before.

OK, I am a 61-year-old woman with a permanent ileostomy since 1990. I am responding because during intercourse, I prefer to be on top. I don't know any reason you can't have intercourse just because of the bag. Only one time in my life did my bag come off during intercourse, and we just both laughed it off. If you have no pain, I'd give it a try to see if there are any negative after-effects. I don't believe there will be. Go for it!

Cat, I am not trained in the mental field, but I personally have a permanent attachment, so I know all the bad things that can happen. I honestly feel that since I have been graced with having a lovely wife and two boys for the last thirty years, my wife saw me when I had to deal with my illness that caused the problems. The attachment is a lot easier on both of us. I did take psychology and psychiatry classes in college, but I leave all that to a friend who has a doctorate in both.

I know that you know about the wraps, but I can honestly say that since I hate the attachment, I think I am more apt to be more sensitive about it than my wife. My sex life, because of the damage the surgery caused to my nerves, has made it impossible for me to get an erection without drugs, which takes away from the excitement for my wife. Even though she excites me, it doesn't show unless I take the drugs. Now, taking it one step further, I have MS, which made it so the little blue pill wouldn't work, so I have to use a shot to get an erection, which really makes it harder to make things more natural.

I love my wife, but knowing how bad things were before my colostomy, I think you are extremely lucky that you can get a reversal. Wraps work great, and the chances of your bag falling off are very unlikely, but conquering that mental block, I feel, is something you have to deal with yourself. I am sure your wife doesn't like seeing it there, but if you can make things more appealing yourself, I am sure you can get where you want to be in your relationship.

I know it's difficult, but if you can act like the attachment isn't there, then you can convince your wife things haven't changed. I know you will get the reversal soon, but if I were you, I would honestly go to someone in one of the mental fields I mentioned above, since I am sure they could help you do things to keep your marriage together.

I am a little crazy since I can somehow find the funnier ways of things that happen to me, even when my MS makes things even harder to deal with. I am alive, and even though I cannot do the things I could when I was younger, I just don't let things tear me apart mentally, which I know sounds crazy.

This isn't what you want to hear, but when I had my original ileostomy, I was 27 and single. My surgeon said to me "Honey, I know this is hard, but it's going to be your opportunity to separate the men from the boys."

I have completely lost all my sexual urges since I had my surgery 4 years ago. I actually get physically sick at the thoughts of having sex. My husband, on the other hand, has not lost any of his urges, he is not bothered at all by my stoma and appliance. Has anyone else had this happen to them after surgery?

Beat, I am reminded of the old 'post hoc, propter hoc' fallacy which argues that because two events occurred in succession, the former event caused the latter event. I suspect that there may be other factors at play here. Maybe you should consider counseling. Life is too short to waste going down blind alleys.
    PB

Firstly, I think everyone has been very frank and honest. I don't believe that having a stoma would be the sole cause of lack of sexual intimacy; there must be some other underlying reason which has provided an excuse. Primeboy put it very succinctly and I value his opinion; he seems to cut through all the BS and get to the point. We all respond differently and not always correctly, but love should overcome any problems. It should not condemn, nor judge, or keep account of rights and wrongs. I don't have a solution, but best wishes and I hope you get to the bottom of things.

Catters... I have one question... Are you changing your appliance or is the wife changing the appliance?... Michael

Primeboy,
Lorraine-Cooper1960, thank you for your responses. I have been to counselors and am still going. I feel that I should add a bit more to my history. I originally went to the hospital to have a hernia repaired. All seemed to have gone well. Post-op, I was walking around, slowly, but up and around. The surgery was on a Friday and the surgeon said that I could go home on Sunday if I continued at that rate of recovery. Late into Saturday, I began to have terrible pain in my abdomen. The pain medication I was receiving was useless. As the hours went on, the pain became disabling. I could no longer walk around or even sit up! The pain was excruciating. I felt the need to move my bowels, but it was an overwhelming pain. Finally, early Sunday morning, a guardian angel of a resident realized that something desperately wrong was going on. I was transferred to the ICU. As they were prepping me to go back to the OR for exploratory surgery, I told the nurse that I felt like I was going to burst if she turned me on my side. She said she would turn me the other way. Again, I said I am going to burst. Being as gentle as they could, they turned me, and the feeling that I was going to burst was gone... because apparently something did burst, and I felt a lot more pain, and then no pain, but a warm flood was rushing from my body. My bowel had ruptured!!! I do not have much memory of the next 7 weeks, other than I was rushed to the OR. Apparently, during my original surgery, my bowel was nicked and a clot formed and continued to grow (the feeling I was going to burst). Anyway, I had 4 more life-saving surgeries over the next 9 days. I was on life support and in the ICU for 7 weeks, in the hospital for 7 months. I had to relearn just about everything from chewing to swallowing to breathing on my own, walking, holding a spoon, etc. I had an open wound on my abdomen stretching from hip to hip, with the ostomy in between. They treated the wound with a wound vac, from Sept until Jan, when they figured it was closed as much as it would on its own. Then I had a skin graft, the graft site was my left thigh. 4 inches by 8 inches. That should give you an idea of the scar on my abdomen. The original hernia surgery of plugs and mesh had to be removed because of the infection from my burst bowel. So that area is very nish, and I should wear a protective hernia belt, but it is in the same site as my ostomy. My entire large bowel was removed, my spleen, my gall bladder, my uterus, and all but 4 feet of my small intestine. I was on dialysis, a ventilator, you name the machine. I was on it. I am not telling this story as "Poor me." This is not a story of woe is me, it is the true life happenings of my life. I am trying to overcome my issues, but I haven't found the answer yet. I asked the doctor if there was such a thing as a female equivalent to Cialis... his response, "Drink some beer, and let him have his way." Prior to all this happening to me, we had a very active sex life. I would initiate escapades at the most unexpected times, as would my husband. My dresser drawer was full of beautiful nighties, etc. So to go from that to nothing is puzzling, to say the least. Talking to the counselor, going on retreats, hormone patches, etc. has done zero to change me. "Giving in" as the doctor suggests, as did a couple of counselors, does nothing for me. I do the best I can to accommodate my husband's wants/needs, but as I said before, the thought of it makes me physically sick. I even feel violated after sex that I agreed to have, and I do my best not to let my husband know how sick the act makes me. It is not his fault, I know that. That is why I try to accommodate him. He is an amazing, patient man and takes what he can get without complaining, but he deserves better than a wife who needs to take something to get through it and take something else to get over it. I am ecstatic when it is over because I know that I am going to be left alone for maybe a week. That is a terrible way to feel and live. I went from planning our next sexcapade to me trying to avoid intimate contact at all costs. It's horrible, but I can't help it!

Since you had to relearn just about everything, Beat, I assume that you had to relearn intimacy as well. This could take time. Your doctor's advice about drinking beer then spreading your legs seems consistent with Neanderthal medical protocols. I am not impressed with the quality of the medical care you have received from the very beginning. If your insurance permits, you may want to have your medical/surgical history and records reviewed by a team of experts at some top university or renowned regional medical center. You have been through a lot and you and your husband deserve better.

PB

I think it is really sad that your wife can't overcome this stigma related to your bag. There are small bags to use for intimacy as well as bag covers that would disguise the bag. My message to her is "GET OVER IT!" You're still the same guy you were before the ostomy. It's really her problem, not yours. I would do whatever it takes to relieve yourself.

Hi beatmaid, oh my Lord you really have gone through it. Most of it I can relate to due to personal experience. As I said before, no one, not a single soul, should judge another person. There are many reasons for the way we and others respond to situations, and it is a very complex problem. Primeboy, that was excellent information and I agree. Beatmaid, I am going to message you privately as I have some things to share that I prefer not to put in the public arena. But continue to be strong, remember that you are loved and contrary to some people who believe life without sex is incomprehensible, they will have to one day face this due to one thing or another. Some people are extremely lucky and continue to have a very active sex life into their dotage, but most don't. I will message you now, and I wish you peace of mind and soul with whatever you choose or can compromise with. To be content where you are (meaning in our personal life) and to be tolerant of our/others' situation and feelings is a precious commodity because all too often we want what we cannot have or hope to achieve, or are not content with our life for many reasons. I cling to my belief in God, and I hope you don't find me presumptuous when I quote a couple of verses that give me peace of mind:

Do not be anxious over anything, but in everything by prayer and supplication along with thanksgiving let your petitions be known to God, and the peace of God that excels all thought will guard your hearts and your mental powers by means of Christ Jesus (Philippians 4:6-7). Plus:
Peace I leave with you; My [own] peace I now give and bequeath to you. Not as the world gives do I give to you. Do not let your hearts be troubled, neither let them be afraid. [Stop allowing yourselves to be agitated and disturbed; and do not permit yourselves to be fearful and intimidated and cowardly and unsettled.] (John 14:27 AMP)
Sincerely, Lorraine

I have pretty much accepted my fate and it's time to move forward now. Love conquers all, so I will just wait it out and be as supportive as I can. I would still much prefer a loving, caring wife without the sex temporarily to a wife with the sex but without some of the caring and devotedness to my ongoing stoma and general health. I just think my wife is having a harder time than me adjusting to the changed circumstances, as well as worrying about me being sore and careful with lifting, etc., until I'm 100% over the surgery. It must be a big mental burden to carry, so I will just try and help her adjust to the situation without any added pressure of me needing sex. No sex for 6-7 months is a small price to pay for a continuing very happy marriage and a long future together. I might just get cranky and frustrated from time to time, lol.

Catters, I am very moved that you have reached a place in your life where you can understand your lovely wife's feelings. She doesn't love you less, she is just very confused where the care and nursing part of her day has turned into an "Ooh baby" moment.
I understand from a professional nursing standpoint that she had to be your nurse for a period of time. I personally have always discussed very frankly with my patients on discharge if they are able to manage the care themselves. I always say if you feel you can't for any reason, medically, physically, or psychological reasons, then to have a professional home care nurse visit and tend to the "business". I know this flies in the wind in today's society where healthcare costs are so high, but especially for women, the lines can become blurred over roles. I also say this for the reason that it carries over to the bedroom in most cases. I say this to women as well to get help but not from their husband for the same reason. Luckily, my ever-loving husband has lived with medical journals, papers, research, and DVDs for skills maintenance, so he thought it was a walk in the park compared to that. I have been guilty of having a medical textbook open at the dinner table (yes, I know I was wrong in every way), but sometimes to keep up, you have to do what you have to do.
It will get better, and as you said, you are happy to have a wife who loves you and looks out for you. I'm sure that your intimate moments will return, so my friend and your lovely wife, well done, and this will soon be but a memory. Lorraine