Wednesday, November 9, 2011

Sex After Permanent Ileostomy Surgery

Some weeks ago during my check up with my surgeon, I very bluntly asked him when I could expect to engage in being physically intimate again. He said, in his heavilly accented English, "In Sweden--you are done. Healthy. Four weeks. Good. In the United States--they say 6-9 weeks." He shrugged. "Just do what feels comfortable and don't push yourself beyond that."
 During a total colectomy, almost, if not all, of the large intestine is removed. One of the most common complaints from women after the surgery is Dyspareunia, pain when having sex. There's a reason for this.
I hate to have to do this to you, but here's a shake-yo-head nasty diagram of a female pelvic floor.

See? Tiny muscle like a skinny saddle right under all that. This shit is fragile as hell. Fuck, man. After my large intestine resection, I was diagnosed with Pelvic Floor Disorder at Mayo clinic in Minnesota. I went through a week of pysical therapy with probes and leads stuck to my abdomen and everything. I do my Kegals every day (been pretty lazy lately, though). There's a book, Saving the Whole Woman that is pretty useful too for certain exercises and all that. I recommend it, but don't let all the crap  they say freak you out. In the book, the writer is like "no surgeries for anything!" and dude, sometimes, you just gotta have a total colectomy. Or a hysterectomy. Or whatever.

But onto sexy times.
So after waiting a gruelling 4 weeks, I was like "I'm tired of this shit. I'm not bleeding anymore, I've had a shot of 151--we've having sex. NOW." Always after a major surgery, when you ease into normal life again, you gotta take stuff slow and be cautious. I have a very gentle partner anyway, so it works that I'm the agressor and he can slow me down before I hurt myself.
What assists is tilting your vagina so it doesn't hurt when you're first easing back into a sex life.
Here's my shit drawing on Micro Paint to demonstrate.

On a flat surface, lay a small firm pillow under the back of your upper hips/buttocks. This raises the pelvis and makes entery easier, tilting you at such an angle that gravity helps the vagina stretch out a bit more :)
It's not the most exciting position, but it works, and if he wants to grab you and turn you around so you are riding him, that also works too. No, nothing gets jostled loose inside, nor are you going to rip open your stitches and have internal bleeding. Jesus. You're not having sex with a jackhammer, are you?

Anyway, if your doctor recommends a total colectomy, open up a dialogue with them about your concerns about removing the rectum. Because I don't have a degenerative disease like Ulceritive Colitus, I was able to speak with my surgeon about leaving some--I got maybe maybe 30 cms--of my rectum to help support the vagina. Without the rectum there, the vagina tends to collapse downward and certainly with gravity, it begins to make things down there very painful anyway with just moving around, much less trying to engage in sexy times. Like I mentioned, if there's no way around its entire removal, do read the Whole Woman book for what you can do to strengthen yourself, but otherwise, please please speak lucidly to your surgeon and be adament you want to save a bit o' the rectum!


  1. found your blog the other day-- quite entertaining! Just had my entire colon out 2 days ago (yay for Cancer AND Ulcerative Colitis)!

    Can't WAIT to get out of the hospital though... These beds are so PAINFUL!

    NOT looking forward to the sex thing (terrified actually). We'll have to see how that goes. So far my husband is so creeped out by the illeostomy that I don't know how soon he'll be asking anyway.

  2. The most important thing right now is your recovery. I hope that the caner issue is adressed properly and handled entirely with the removal of your colon, but i hope some additional treatments, just in case there is residual cacerous cells, is on the way.
    The sex thing has more ot do with tenderness. WHen i write here, it's usually pretty crass and straight-forward, ostly becasue I'm so frustrated with not finding proper lengthly answers about this on the web. people are too embaressed or shy or afraid.
    But when you start feeling like your self again, to your husband, you can be like "It's an ileostomy. So the fuck what?" It's just a litle rosebud on your lower abdomen that you have a crinkly bag covering it. So whocares? Oh my god--soemone has a birthmark on their neck! Let's be horrified!! No.... It's just something that helps you actually to live a more productive life. If you treat it like it's not a big deal, and keep repeating the non-challantness of it being not a big deal, it eventually becomes "not a big deal" to those around you. My mom sometimes forgets I even have one, and she's been here with me on my entire trip!

    Do update me more though on what's happening to you. I'm sending loving thoughts and prayers.

    <3 Tinylittlelifeform

  3. turns out I'm stuck with chemo now-- spread to lymph nodes-- rawr!! Stage IIIc-- sucks!! So a little bag of poo on my side will be the least of my worries while we're pumping me full of poison.

    I'm filling the world with pics of my ostomy too-- there is NOT enough info out there. And when 30 year olds are getting stage 3 cancer, clearly people need to understand more about it!

    At least I'm recovering from the surgery well (hospital was miserable-- I was allergic to everything in it-- bedding, gown, IV lines, Oxygen tubing lines, you name it!!). 1 week out now and off the pain pills, and would be doing everything if I was allowed!

  4. Oh my Lord--30 is so young! I'm nearing that age myself.
    So So sorry to hear it has spread to your Lymphs... my mom had breast cancer that spread to her Lymph nodes as well. Dreadful.

    Glad you are home now!Ugh--such a relief. I'm convinced hospitals make you more sick, what with exposing you to new diff germs to nurses waking you up every few hours so you never really get a good night's rest.

    But yes, do let me know where you post your pics, or if you like, I could post them too, if you woudl find that appropriate for the sake of science and as you said, flooding the world with more information!

    <3 Tinylittlelifeform

  5. There's a new treatment for dyspareunia to cause stem cells to generate new healthy tissue. The procedure is called o-shot which has been very effective with my patients.
    More can be seen at and
    Hope this helps.
    Charles Runels, MD

  6. There's a new treatment for dyspareunia to cause stem cells to generate new healthy tissue. The procedure is called o-shot which has been very effective with my patient.
    More can be seen at
    Hope this helps.
    Charles Runels, MD

  7. I had my op nearly 3 years ago.when I complained about stinging on penetration I was given a hormone good still stings so much on entry that I can't do pain anywhere else one metioned sex at the hospital

  8. I know how you feel. My consultant dismissed my concerns about painful intercourse. It's nice to know I'm not on my own.

  9. I know how you feel. My consultant dismissed my concerns about painful intercourse. It's nice to know I'm not on my own.