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Let’s Talk about Sex…with an Ileostomy

Posted May 20 2009 1:20pm

All right, so before I get to the goods, quick update!

22nd Birthday yesterday. All I can say is 21 was not the year I anticipated it to be. The most challenging year of my life thus far without any shadow of a doubt. Everything that has happened to me in the last year has made me a stronger person and will continue to have this effect for years to come. I am healthier, happier, and more active than I have ever been before! Overall, I feel fully satisfied with my decision to have the j-pouch surgery. If I had seen myself a year ago today, I don’t believe I would have recognized myself. The ileostomy has given me the chance to start over. Confident. Smiling. GRATEFUL for all that I have and what I was missing in life.
New Year’s Eve was an amazing night with old friends I hadn’t seen in ages! I drank a good deal. My little friend actually did just fine, although with my alcohol intake he was evacuating more than he usually did. Other than that, it was time well spent and I know I couldn’t have done it if UC was still in my life.
I am dedicating this next year to finding adequate insurance and scheduling a takedown!
In the meantime, I have absolutely no complaints! Eating well, drinking well, working without conflict, good relationships, fantastic family, and the promise of more great things to come! I hope everyone had a safe, healthy new year and enjoyed it just as much as I!

With that said, on to the big topic at hand: sexual relationships. I know I promised this one a long time ago, but it’s really taken me that span of time to summon the courage and confidence to actually acquire some writing material. Warning: I’m not going to be shy about this–I’m certain we crossed that threshold long ago anyway.

 Sean and I have been in a relationship for a year and 7 months to the day. We’ve known each other for 6 years. Throughout my entire UC/surgery/ileostomy experience he has been a rock. A solid rock. A pillar even. Just like those big marble ones you see holding up ancient ruins in Europe, only in much better condition. He has stayed by my side through it all. I’m gonna keep him. And I’ll tell you why.

We’ve talked about it…a lot. I’m sure he’s sick of it by now (of course he doesn’t complain). The physical aspect of our relationship was amazing before. Since the surgery, I’ve been concerned about too many things. Things like looking and feeling attractive, having a sex drive, achieving an orgasm, and being in pain were never an issue pre-surgery. As I stared down at my stoma for the first few days I wondered, “Will Sean ever find me sexually desirable again?”
He hasn’t pushed the intimacy issue. He knows that I’m not exactly the most comfortable with the ileostomy and my body image. I have since gotten over the fear of my appearance with a few little solutions. 1.) Long satin slips/camisoles and 2.) (I have yet to try this but I am planning on purchasing) A heart tie. Ladies, if you haven’t heard of this I suggest looking into it. It’s an ostomy cover in the shape of a heart. It stretches over the bag and you secure either with a tie or tape (depending on whether you use a one-piece or a two-piece appliance) They have them in different colors and textures! It’s pretty amazing. I’m going to buy one as a birthday gift to me…and I suppose it counts for Sean too.  Oh, Allegromedical has something called a Wearclose Primera Ostomy Garment. Same concept only it secures with a belt. Viola, two solutions for body image problems! You may also attempt the hole in the undergarments or purchase them that way. Your call. Okay, three. Count ‘em. Three body images solutions for sex.

We conquered the first hurdle. We feel comfortable enough to have sex. Now what about the sex drive? No offense to Sean, but as a young male of ripe sexual potency, he has a healthy sex drive. I, on the other hand, had no sex drive for the first three months. Between recovery and revisiting the hospital in addition to adjusting t the new lifestyle, I simply wasn’t feeling it.  It took three months alone for my menstrual cycle to return! As the months drag on, however, my desire has returned in full force. Sex drive problem has remedied itself. It just took some time.

It’s not over yet. Steph, for the first time, did not do much research on sex itself post-surgery. Sure, I heard about the scar tissue and difficulty of conception for some women. I was even aware of the no anal sex law. I’ll go so far as to say I read warnings about avoiding putting anything in the stoma during sex…yes I kid you not! ::Shudder:: I failed to realize just what regular sexual encounters would do to my physical state. Now, it is recommended by many journals, websites, fellow ostomates, and books to try positions such as female on top and behind. Since these two were our preference anyway, this was not a big deal. We were all set to go but when the big moment arrived, to be perfectly blunt, it hurt! Painful business! (I need to admit something. I haven’t had sex in 7 months…for good reason of course. The surgery obviously had some repercussions here, seeing as how the reproductive organs are near the surgical site.) I did some research following our encounter. Ostomyland and the UOAA both agree:

“If the rectum has been removed, the whole position and structure/size of your vagina may feel different. Be aware that for some women it is either uncomfortable and/or painful. Your vagina may feel too small or too tight. You may not come to orgasm the first time if things are too strange and different.”

When I read this I thought to myself, “Well, that makes tons of sense, stupid!” I also rediscovered the most basic sex rules!

“Most women who have experienced painful post-operative intercourse say that the pain diminishes with time, hormonal creams or lubricants, relaxation, gentle thrusting, and manual stimulation.” UOAA

Shame they don’t teach you that in sexual education. So what have we learned here?

1.) Lubrication. Very important. It enhances the comfort and ease of intimacy. I have never had that problem before but I honestly believe due to my nervousness, it wasn’t as great as it could have been. So I have purchased lubricant (KY warming gel) to test out.

2.) Slow down! Rushing is not good for anyone, unless it’s a quickie. However, in our circumstances, slower is better.

3.) Lots of foreplay. Duh

4.) At the recommendation of a nurse: sex toys! It can help to loosen things up and stretch out the muscles again.

So when the time is right, we’re going to try again. Sean was right: it’s not going to be great the first time back. We’ll get there, though. Slow and steady wins the race, after all. I don’t know what I’d do without such an understanding and loving boyfriend. Now, more than ever, I feel abundant optimism and deep appreciation for what we have together.

I’ll keep you posted on how the heart tie works. Thanks to Sean for being gung-ho about sharing our personal life on the blog. I’m going to dedicate the next post to hair loss! Oh yeah, been there, no fun!

That’s my story and I’m stickin’ to it. Happy New Year everyone!

Stay happy and healthy!

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