Seeking Advice - Sex and Self-Image Challenges with an Ostomy

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~traci~
May 31, 2011 12:57 am

Ok, ok, perhaps ostomates can find a life partner out there. But what about sex? This is actually one of the top questions people ask me when they find out I have an ostomy. "Can you still have sex?" I tell them, of course I can... but underneath my breath, I'm thinking "NO THANK YOU!"
Reasons why my sex life has not improved since installation of my permanent ileostomy: 1) I am in pain. I just don't feel up to making love. I have been to the doctors and had everything checked and been on testosterone shots... but nothing has helped. I do have my rectum out and my uterus has tilted after the rectum was removed. 2) When I had Crohn's/ulcerative colitis and when I had a straight ileoanal anastomosis, I often had perianal pain that made sex uncomfortable at the least and painful at times. 3) I'm worrying about having an accident during sex. It has happened where my bag clip came undone (damn Velcro bag closures). 4) I no longer have to excuse myself to go to the bathroom "just one more time." LOL 5) I think the biggest impact the ostomy has had on my sex life is in the area of self-image, not in terms of physical functioning. I've had my ostomy for almost 20 years now and I still have days where I look in the mirror and cry. Where I feel ugly and damaged and very unsexy. Then my husband will walk up behind me and kiss the back of my neck and tell me and show me how he feels about me. I know that I'm so lucky to have him. He has helped me deal with the self-image issue and picks my spirits up on those days when I feel so low. As I said before, over time I have noticed greater problems with the impact of my ostomy on my self-image. Has anyone felt this way? How did you overcome this issue? Any advice would be great! Thanks ~traci~

Past Member
May 31, 2011 2:08 am

Hi Traci.....
I'm so-o-o sorry you're going through such pain and feelings of inadequacy. I do understand. My illness and consequent permanent ileo was the end of my marriage, thus leaving me sick, scared and SINGLE, the trifecta of SUCKING !!!...

I don't love what I see in the mirror either....but have found that it didn't affect my having another relationship, "IF I LET IT"....I've had 2 long-term relationships, neither ending because of my illness or surgeries. With a little preparation (such as cleaning my bag, wearing crotchless underwear, as they hold me in place), I've been told, had I not told them, they would have never known. Let's face it, when you're in the moment, they're not looking at your stomach or side...LOL

Testing of positions is also a good idea. I prefer the top, and haven't had any complaints, but there are many others that avoid rubbing or accidental pulling of your pouch. In the past, my desire has been lessened due to medications, etc... but I'VE NEVER lost my desire for intimacy. You can hold, touch and love in more than one way. Intercourse isn't the only way to give and receive pleasure. Anyone can have "Sex", but intimacy comes from love.

(You can also use the strapless elastic halter tops around your waist to hide and hold your pouch in place. They come in all colors, feel smooth and aren't binding.)

It may no longer be spontaneous, but can certainly be as pleasurable, tender, giving, patient, loving and satisfying as ever......

You're obviously still a very desirable woman (According to your husband's gentle kisses), look into his eyes and try to see what he sees.........the woman he married, the woman he loves....then just let the rest take care of itself. It sounds as though you've survived the worst that could happen, right?

Wishing you comfort, BEG

Posted by: w30bob

Hi gang,

I was thinking what a great resource this site has been for me since I found it. It would have been really helpful, but maybe a bit scary, to have found it before my ostomy, but that's water under the bridge. But I got thinking about it, and now I'm questioning why doctors and hospitals don't provide this site's contact info to any patient even considering an ostomy today. And how can we change that so potential ostomates can learn about the road ahead for them by getting on here and asking questions before the docs go chop-chop. How exactly do you get all hospitals to provide their patients specific information, like this website?

I just happened to find this site something like 4 years after my ostomy when I Googled "ostomy forum" or something like that. But I never found it during previous searches.....so I found this site pretty much by pure luck. We need to find a way to make this site available to new or soon-to-be ostomates......as that's when we really need to commiserate with fellow ostomates. Anybody have any thoughts on how we do this?

Thanks,

Bob

poppie
May 31, 2011 2:18 am

I am a 48-year-old male. I have had my ileostomy for 11 years. It took my wife 12 months to get used to it, but after that, it was as if the ileo wasn't even there. Sex didn't become a problem. She knows everything about the stoma. I could have felt sorry for myself or made other people feel sorry for me. I just think life is too short. Who cares what people might think? Be positive. That's the greatest thing you can do.

~traci~
May 31, 2011 6:14 am

Your right
Browneyedgirl ..... I never thought of it that way! Thanks so much, sometimes
when it's right in front of you but and you can't see it until someone else points it out for you!

~traci~

wookie2005
May 31, 2011 3:20 pm

Oh Traci,

I am so sorry that you have gone through so much, but I know the feeling. I had my ileostomy done in June 2010, and since then, my sex life with my husband hasn't been the best. But it wasn't the best before that either, as I was too sick. However, I do guess I am lucky in some way as he adapted to the illness better than I have, but he also works within the medical field. I am fighting pain every day. Only on Saturday just gone was I back in the hospital because I had a burst artery AGAIN! Last time this happened was after my operation in December and now after my operation in May. So bloody over it!

Traci, I hope you keep well, my darling!

Take care,
Brooke
xxx

 

My Ostomy Journey: Bruce | Hollister

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Past Member
Jun 02, 2011 8:01 pm

You are so welcome, my friend....know that you're never alone.

Always, BEG