Please share with me your experience re: sex after a j pouch

I had a 1-step in 1995. I resumed sexual activity about 4weeks post-op. I didn't really have pain during intercourse, but did have a lot of pressure and worries about fecal leakage. I found that my ally was position changes. Me on top, side-lying rear entry, that sort of thing. The goal: to reduce presssure on my pouch.

Basically, where there's a will, there's a way...

Jan

Give it time...a lot of time. From reading people's experiences on here, it can be months and months til it gets better. For me, it was horrible after surgery, just as you describe. 6 months after surgery, I got pregnant. It was even worse during pregnancy. Then after my son was born, all the problems just went away, and things are great now. So yes, I say, it will get better!

Following J pouch surgery I found intercourse to be very painful. No amount of lubrication helped. I kept waiting for it to get better. I was eventually prescribed an estrogen tablet to be inserted into the vagina initially for 2 weeks and then 2 or 3 times per week maintenance. Thinning vaginal tissue was the reason for the pain caused by a combination of menopause and prior steroid use. Maybe this will help you also.

I had my k pouch done when I was 18 so I can honestly say that my 'experience' was rather limited.
Once I started to have a relationship things were ok (my k pouch is in front attached to my abdominal wall and not behind)...I cannot really say what it was or would have been without a pouch...but I have managed over the years to have good, happy and successful relationships with the men in my life..
There are things that feel 'funny', painful, pressure or strange...not all of them are bad or dangerous but have to be 'navigated' in order to go back to healthy, carefree sex.
Like Jan said, position in 1 of them...you need to try different ones to see which positon works best for you and your pouch (understand that over the years, this can change too...meaning you might be stuck in 1 positon for now but as the years go by you will be able to enjoy others.
How full/empty your pouch is, is another factor...in my case, the emptier the better. The less contents, the less pressure. Also, less fear of leakage, gas etc.
How afraid you are. Fear plays a huge factor. I am a rather paranoid person and fear paralyzed me. I couldn't relax with my pouch and partner...Always scared that an incident would happen. The day I stoped worrying was the day that I started enjoying myself (took way too many years!...What a waste of time and love). In my case I needed to empty my pouch, put a patch on my stoma avoid certain uncomfortable postions. worked great!
Lube. You never have enough of it.
Laughter. You need to relax, laugh and expect disaster but not anticipate it...And make a joke of it all! Keep a towel ready, drink some wine, give yourself permission to say Stop if it hurts, buy yourself a book on positons and try them all until you find the right ones (kind of feels like a game of twister)...and do not take it all too seriously. Sex is joy...And fun...so do not worry so much...Try all of the things that you have read about and never dared...and laugh, laugh, laugh.
And give yourself time to heal...it does take a while.
Sharon

I had a bit of pain after each surgery; to be honest, my biggest challenge with it has been mental since all my surgeries. I think that I've dissociated from my body a lot since then to protect myself, and to be honest, it's very difficult to get in the moment and allow myself to be intimate without automatically thinking something bad is going to happen to my body any time I am touched below the waist. It's been my reflex reaction ever since, and its been 6 years since the last surgery. Something I'm still working on.

Michelle,
I don't know how old you are or your circumstances but...
Stess is the enemy of pleasure...it takes a lot of time, relaxation, trust (not just your partner but yourself and your body) and fun...
I found that doing something different, totally strange or unusual with my partner helped a lot (please understand that I am a Big prude. Mega prude in the sex department and the dozen abdominal scars (even after plastic surgery), weight gain, magical moving stomas and lopsidedness of it all kind of killed my spontinaity...and made things difficult with hubby after each surgery.
That said, hubby is more of a prude than I am...(not possible!) so finding our way back to joy was not easy.
Fear of hurting me or pain on my part, not wanting to 'show' myself etc killed a lot of potential good times...
But just after 50 something clicked. Something about realising that it is now or never, I do not have that many good yrs left with hubby and that I do not want to waste them...and that joy is so rare in this world that I don't want to live without it.
A lot of my tensions, stress and fear lifted off...
The 'new' stuff that hubby and I do? He has just learned to massage my back (about time!)...I give him a pedicure or manicure...he holds me tight...and just breaths...or tickles me.
Nothing wild but it is all new for us...And it relaxes us.
Sharon

I want to thank you all so much for your advice. It means so much to me to have a group of women who TRULY understand the challenges that occur with this surgery: physically, emotionally, sexually...I was intimate with my husband for the 4th time since surgery (j pouch formation- not reattached yet) tonight and for the first time, it didn't burn nearly as bad. But- I am bleeding now from my rectum so even though we were gentle , my pouch is obviously a little inflamed or such...I am on Coumadin too temporarily which I am sure contributes...AFTER REATTATCHMENT does sex pain occur again or do you think I have felt the worst of it with the part 1 (colectomy, loop ileostomy, j pouch formation)?

MM3,
It is very individual but I think that most of us agree that it takes time for swelling to go down and the bits and pieces that shifted around in there to settle down and find a comfortable spot.
It can take up to a yr for swelling and inflamation to calm down so expect things to improve over time.
And yes, coumadin will encourage bleeding...any irritation may tend to bleed while on it so do not worry too much about that one.
Congrats for having the courage to try again...and again...and again
Sharon

I mostly have to second everything Sharon has said. Give it time. Relax.

It's been about a year post-takedown for me, and I would say on the whole things are feeling more "normal" (whatever that is - ha). Things feel different now, but mostly good. (Hubby thinks it's better .)

It's hard to remember exactly, but I think I could say that it's better after takedown - not because of the jpouch necessarily but because my ostomy was always sore and seemed to get in the way. (That being said, I did get pregnant with an ostomy.)

I wouldn't expect immediate improvement after surgery... remember how much trauma your abdomen/pelvic region has gone through!!

Thanks for these postings.  I am 3 years out from my surgeries.  Overall, my health is the best it has been in over a decade.  However, sex continues to be a bit of a challenge.  None of the problems are directly related to the j-pouch.  We waited for things to heal and knew that would take time.  However, I have experienced internal pain during intercourse that was never there before.  It is not awful, but it certainly isn't pleasurable, and it is very frustrating.  I never know when it will happen.  It is possible that this is all just coincidence and that I just happened to start experiencing early menopause symptoms at the same time of the surgery.  Has anyone else experienced this?  Less natural lubrication, burning pain, sometimes no response to arousing stimuli....I am 45, btw.

For me, there was not so much pain, but sensitivity and worry about fecal incontinence during sex that was most distracting. It seemed like it did not take much to stimulate that sensation of urgency. I must admit that there were a few times I interrupted activities to go empty my pouch, just to be sure. I always empty before coming to bed, but still... Missionary position is the worst. There just seems to be just too much pounding on the pouch. Most comfortable for me is side lying rear entry and me on top (at least back when my arthritis was not so bad in my hips). My acrobat days are over (if they ever were present)! 

 

Bottom line, where there is love, there is a way!

 

Jan

My experience has also been improved with time. Time to process the trauma, time to get to know myself and time to get to know my husband. I had most of my surgeries before I met him and still it has changed a lot over the years. With the boyfriend I was with at the time I basically wanted to be in one position all the time after the surgeries and I needed it to be very ritualized so that I would know what to expect in terms of where and when there would be pressure. As I have healed on all levels I have become much more flexible (even on a literal level). I know I was fearful for a long time, but I have never actually had issues with either gas or leakage during sex. We do laugh a lot because sex is funny regardless of your scars, so I am sure that makes room in case it ever happens. Anyway, if you feel stressed about it then you might try just skipping penetration for a while. That might just give time to enjoy each other and not worry too much. Oh and I agree with Jan, I am picky about being empty and don't like to have sex too soon after eating because usually I have to go to the bathroom relatively soon after I eat. He thinks its very funny, but I just tell him that I'm digesting. He waits, he knows I'm worth it .

Just a sidebar...

I sometimes 'plan' for sex, which isn't such a bad thing...some people go get waxed or to the hairdresser's...I plan to eat light, empty the pouch completely (with a k pouch I use a lot of irrigation to make sure that it is squeeky clean  and gas-free in there) and take an anti-inflamatory so that nothing aches.

I think that it makes me feel a bit 'safer' in there so I am more relaxed and can have fun.

Sharon