Seeking advice on sex life after ileostomy surgery

Lorraine, you said it better than I, when I had asked if he or his wife was changing his appliance.........the roles as you say can be difficult to separate and manage within a chronic illness and most certainly after this type of surgery.........I'm a real strong advocate of changing one's own appliance......PERIOD........that is of course if it's impossible, due to other circumstances, but the "I can't look at it" is not one of them... I know in time we all get there, but the sooner one can change his or her own appliance, healing begins on many levels..........I liked your words...You were right on.........Michael

And Catters, I'm still wondering if you or the misses is changing your pouch? If you don't mind me asking.

Beyondpar, as I said in an earlier post, my wife is doing it. She has made me promise not to do it myself until I'm completely healed from surgery. I have a very bad skin burn right around the edge of my stoma that has no skin on it. To have any chance of healing it, the base plate has to fit exactly around the stoma and I can't see to do it, and it has to be fitted while I'm lying down. As soon as it's healed, I will definitely be changing my own appliances. If I break my word to her, I will have hell to pay.

Beyondpar, thank you. I appreciate your comments. You are correct in saying that each and every person should do it themselves, but for many reasons, physically or mentally, some aren't able. I read Catttters' reply and I do understand and sympathize with both him and his wife. She is trying to be a good wife and look after the man she loves. By doing this, as I said, it's difficult to go from nursemaid to lover. It's hard enough to come off shift and be up for it because of the time restraints where we were both in the same room at the same time. I did knock him back over the years, either through tiredness if it had been particularly hectic at work, or if I had lost a patient that I had come to know well over the years. It's not conducive to intimacy. I will say though that I always explained why and offered him other options!!
Say no more LOL.
Catttters, I will say one thing and I hope you won't take this the wrong way as it is meant purely to help with no agenda on my part.
I don't know when you had your surgery, so I don't know where you are progress-wise in your recovery.
I had my ileostomy (irreversible) in August after so many years of pain and vomiting, running to the loo all the time, and then finding out I had cancer. I didn't want this, but unfortunately, life isn't always fair and we have to choose whether to accept it and get on with it (while following your surgeon's advice) or fall in a heap.
I had to have revision surgery in December, and because of my health, the first surgery had an extremely large surgical scar, and I was kept in an induced coma in ICU for quite some time. No one is prepared for that. Especially as we had talked about approaching this another way. Now I will get to the point of this reply, after the December surgery, again it was an open wound and I was extremely upset that the scar sits under my wafer, there is not one position I can put the appliance in to avoid it, and it is a crescent shape. This means pain with a capital P when I have to remove my device, and it absolutely hurts like billyo when I clean and prepare to put the new one on. I made myself do it because although my husband isn't fazed by it, I am! So I have chosen to just get on with it. As the device is stuck to the wound, the healing time takes longer than the usual time because of constantly tugging and sticking things to it.
This was my choice, and I accept the consequences.
I won't comment as only you and your wife are fully aware of your situation, I will just reiterate that this will soon be a memory, and boy oh boy, think about the moment when you can both come together. It will be like a honeymoon all over again!!

Here's my version of sex after the surgery. I haven't heard of anyone else (the guys) having the same problem, but I was left kinda numb with a tingling sensation from my toes up to my armpit.
Was told that the feeling would return in time. It, feeling, did start to return but seemed to linger in my groin area, rendering my entire groin area (you know what I mean) without sensation. That was back in '08 when I obtained use of the bag, then in '09 with the reversal. I still now have great difficulty participating in sex
because the partial numbness lingers on. I don't think normal sensitivity will ever fully return.

Just tossing my two cents' worth in.......................

Jack

Christiesdad, after hearing your experience, I don't have any problems to speak of. I function normally in the nether regions so everything is good. After my reversal and subsequent recovery, I'm very hopeful things will go back the way they were.

Words of Encouragement from Ostomy Advocates I Hollister

I haven't read all of this. I hate to say it, but the biggest mistake is having your wife do change that - whether she said she'd do it or not. Taking care of the one you love to that extent takes a lot out of the romantic aspect. I know, I took care of my husband for almost 20 years. Wasn't about this - but I had to wipe his ass, change his pants, etc. etc. It was impossible to switch to lover after all that.

Christiesdad,
You know there is more than one way to skin a cat. Oh, for you cat lovers, which include me, it is a figure of speech.
I asked my family doctor about the "slight" change in my sexability (ability to have sex, remember you heard it here first). Her response was to talk to my male surgeon. He asked when that started, told him after the operation, and he made the significant observation: "Oh".
Maybe he was surprised that at my age I still think about it. But growing up in the ghetto of Amsterdam, you learn about life early and since the ghetto (now replaced) was not too far from the zeedijk (Red Light District) (now replaced by the oudezijds achterburgwall, the area became too dangerous even for the prostitutes). Also, I worked in Hamburg when I was 16 and learned about the Marientalstrasse. Funny thing, I never paid for sex... directly, in hindsight...
In any case, getting back on track, you can satisfy your partner in a whole range of different methods. And in the case of Amy Farrah Fowler of the Big Bang Theory, she has an electric toothbrush she named George and offered to introduce Penny to George, and she doesn't use it to brush her teeth. And I can always switch hands. Oh geez, just a dirty old man.
Christiesdad, you don't have to tell Christie everything, and by the way, check my blog about Daughter's Week.
Ed

Yes, but the cat doesn't care for any of them..!!

And for the second half of the quote, here's an appropriate joke.....

A man is giving a lecture on male sexual health.......

He says... "Before we start... I would like to see a show of hands... please raise your hands if you have sex more than once a day."

A small number of men in the audience raise their hands...

He continues, "Ok...good... raise your hands if you have sex once a day."

A larger group raise their hands...

And again, "Great... now raise your hands if you have sex more than twice a week."

Quite a few hands are raised.

"That's terrific...now raise your hands if you have sex once a week."

The majority raise their hands.... The man giving the speech notices a small man with a huge grin on his face looking nervously around the room..

"Ok...raise your hands if you have sex once every two weeks."

A lot of men raise their hands... The nervous man is still smiling widely but has not raised his hand.

"Alright...raise your hands if you have sex once a month."

Only a few men raise their hands... The nervous man lets out a loud laugh...but still doesn't raise his hand.

"Ok....who has sex once a year?"

Three men raise their hands... The nervous man laughs out loud again and smiles like a Cheshire cat.

The man continues... "Once every two years?"

One man raises his hand...but the nervous man still hasn't raised his hand. He looks as happy as a child in a toy store..

The man asks once more, "Ok....who here has sex only once every ten years?"

The nervous man jumps up from his seat and lets out a huge scream... He laughs uncontrollably and raises his hand..

The man asks.... "Sir...if you don't mind me asking... you seem to have sex less than any other man in this room....actually less than any man I have ever met... yet you are the happiest man in the room...how can you be so happy when you only have sex once every ten years?"

The nervous man replies...

"TONIGHT'S THE NIGHT!!!!!"

Everything is relative!
Eddie

Sex is eminently possible - you need to speak to your stoma nurse or chemist and get some bandages to hold the bag close to your body. I am not sure what it is called but it is a transparent sticky bandage that holds the bag against your tummy. You will need to wear a top during sex (or your partner will) but sex is certainly doable, just different to how it was. I find it is more about being self-conscious than about not being able to physically do it. Just have patience with yourself and you both need to have patience with each other. After all, this is not something you chose!!!!

Thank you for answering so nicely... I do, however, think that I will need professional help to get through this barrier... I say this as precisely as I can... I truly hate the thought of sex, the physical aspect of it.. If there is a sex scene on a TV program or a movie, I honestly get nauseated.. It is to the point now that kissing is making me ill. I cannot stomach anything more than a peck... and if it is more than a peck, I turn my head quickly and wipe my mouth.... I know that there is something wrong with me... I went to my family doctor, who told me to drink a few beers and loosen up.. I asked him to refer me to a psychologist or some such thing, he said those doctors were for people who were sick... not just unhappy wives... The way I feel is I couldn't care less if I ever had sex again..

I agree, seek professional help. I hope things improve for you.  

I have had a bag for 31 years, while 18 of those; I was married. I had the surgery 2 years into my marriage. I divorced him, but it had nothing to do with the bag.

I'm sorry, but that's a cop out and very uncaring.

You say you understand her feelings. Really!!! Isn't it for better or worse? This is your wife who professes to love you. You are still the same man.

Hi, I'm back home after 3 months in the hospital so I didn't really see your reply about groin numbness, etc.

I think you have a damaged nerve(s) from the procedure(s). The bad thing is you can be left with residual numbness or alternatively hypersensitivity to touch. The one redeeming factor is that nerve endings are a bit like plant roots. If you divide a plant at the roots, you have effectively removed that root section, but the plant lives on. Also, it grows new roots.

The same thing happens with nerves in the body. If nerves are cut or damaged, they stop working obviously or only partially work. However, they do regenerate and send out new nerve endings, creating a new pathway. It doesn't happen overnight, but it does happen. You can get jumpy or electric-like shocks in the area momentarily from the regeneration, so if this happens, don't worry, it's doing its job.

Also, a neurologist is specialized in nerve conductivity and management, so maybe an appointment would be appropriate.

Good luck.

I'm sorry but she sounds extremely selfish to me!!!!! I thought marriage was to be bonded in sickness and in health" obviously she has issues with that bond. Heaven forbid if she gets sick will be quite a different world then but I guess she is just "perfect". Sorry but I don't stand for such narrow-minded judgement!! Good luck with that!

I am incredibly lucky. I have been married 24 years this month. A few years ago, I started having GI pain and was miserable all of the time. My husband got a little testy with me when I would not go out with him and couldn't do laundry, but he took over shopping and laundry. A year and a half ago, I was having problems walking. The doctor couldn't figure it out. My blood work was pointing to heart failure, liver failure, and a lot of other stuff. Finally, he told me to go to the ER because they would get tests done faster than he could.

Diagnosis? Diverticulitis with stricture, abscess in my hip from it, leaking crap into my abdomen. I had been wearing diapers on and off for a while and couldn't shit unless it was liquid. My husband did so many loads of shitty clothes that I could not do, and he did it happily.

Fast forward, 4 operations in about a year, colostomy, ileostomy, some resections. Initially, the bags would not stick. I slept on the leather couch since they would come loose while I slept, and that was easier to clean than the sheets and blankets.

Now? My husband does most of the work. I have started cooking more. I feel better than I have in years and hopefully will get a takedown in the next month. BUT my husband is an amazing lover. He does not care that my belly is scarred or that I have a bag hanging off of it. We have a great sex life. I am lucky in so many ways.

It would really help your wife to talk to other people, spouses who are married to ostomates. If you can find a support group near you,

or even have her post on this site....it might help. My husband and I both had ostomies when we met and married. He got sick often with dehydration issues, and I always took care of him when he needed me. But when I needed help to change in my last months of my pregnancy, he just couldn't bring himself to do it. I thought it was so odd and was really angry and resentful. But he set up a mirror for me to do my own changing (I couldn't see my ostomy at that point). And then it turned out that he "didn't do diapers either..... But ironically, we had a good sex life. It's really difficult to understand the other's point of view. Does she really know how much her attitude is hurting you?

We all wish you the best....and hope you can work out your differences.

Marsha

I was just wondering who your post was about... You asked, "Does she really know how much her attitude is hurting you?"

Lorraine, Lorraine....

Hopefully the toolbelt doesn't come with any sharp objects.
But rather than a toolbelt, a sports bra works great, even for men, lol

Any doctor who would give an answer like that to a female patient should be forced to retire. Beatmaid, the first thing you should do is find a new doctor. Perhaps you should find yourself a gynecologist who can make certain there are no unusual physical problems, then refer you to the appropriate psychological specialist for further treatment. There is one other thing I hesitate to mention for fear of being misunderstood, but honestly requires it. I have many friends, both male and female, whose sexual orientation is different than mine. In addition, during my years as a counselor, I have had a few lesbian or gay people come to me. I did not feel competent to handle them as clients because of my strong religious beliefs. Some of these lesbians, either friends or potential clients, told me that they had suppressed their true feelings so deeply they did not realize they had these feelings. Something would trigger an awareness that grew to the point that sex with a man literally became physically disgusting to them. Only after they had discovered and consummated their desires for other women were they able to enjoy sex again. Please don't anyone be angry at me, especially not you, Beatmaid, since I am only relaying things I have been told. You would still need the help of a competent counselor, even if that did somehow apply to you. I wish only the best for any reader of this looking post.

Don