UC to J-Pouch Story

Sex and Intimacy

Posted by Megan on July 3, 2008

Sex and Intimacy, Guide for Men and the people who love them Webcast

Oh, the tricky part of chronic disease. And the part we don’t nearly talk about enough, sex and intimacy.  I found the above webcast from male living with Crohn’s to be a honest, humorous discussion about his body image, disease, and his sex and intimacy challenges. Here, see this link to Mout Sinai about Sexuality: possible problems after surgery .  Although it is excellent information, it is “technical” where is the emotional stuff, where is the relationship aspect. Under the Emotional Issues section of the Mt. Sinai page they do state “Of course, other factors also contribute to how an individual perceives changes after surgery. People whose self-image is more reliant on physical appearance may be more prone to concern. Having or not having a committed partner has an important effect on coping. The amount of education available for surgery, which may allow for more realistic expectations, may also have an influence.”   Okay, so let’s talk about that, what do they mean?

I know that this was for years a real struggle for Mark and I to manage, especially when we were learning his disease, and he was losing his interest in anything physcial the more his health deteriorated.  But what we did form was a true relationship based on intimacy.  And it has been this intimacy that was one of the biggest gifts UC and surgery gave us.  We learned because we had to what gentleness and patience means, if we hadn’t I don’t think our relationship could have made it.  I find now that our intimacy is on a level unlike what I see in many couples (non-disease couples), and to be honest I wouldn’t trade it for anything.  We’ve been together 14 years, in our early 30s, and although many years of 20s were lost to UC – we are now back to healthy living which means more sex with now this added intimacy.   Good things can come from being sick I guess?!

I think that when we address disease or surgeries like Mark’s we talk about everything but the reality of body image, sex and intimacy. I wanted to share some of our experience because IT IS REAL, and all you reading this are probably in some stage of dealing with either sex or intimacy issues due to your stage of disease or surgery.   All I can say is talk about it, be honest and know it was one of our hardest issues over Mark’s illness.

Sex and living with an Ostomy:  Everryone is different, so for some people being intimate with the stoma is probably a bigger than others (early on when the stoma is newish).  For us it wasn’t a big deal at all, and the reason it wasn’t a big deal is because Mark was HEALTHY finally. So for us the ostomy represented health.  I think the first time we were intimate after the stoma Mark wore the phoenix belt, then after that it wasn’t a big deal, he would just empty the bag and it would just there. I know some people tape up the bag, I know some people use attach smaller more temporary ostomy bags (which is clever). I’ve read of women wearing lingerie that strategically covers up the bag, etc…People make it work, and you’ll be suprised by how it is not really a big deal (as long as you make it a non-issue). 

The Female Perspective: Females on Jpouch.org talking about Ostomy & Sex

The Male Perspective: Males on jpouch.org talking about sex and ostomy

Link to many many pages of topics relating to sex & jpouch/ostomy stuff:  Used the “Find” feature typed in “Sex” and there are 13+ Pages related to sex on the jpouch.org forum

These are only a few perspectives, but you can see that (1) people make the ostomy work and it isn’t an issue, and (2) there are places like www.jpouch.org where you can go and get the support you need on any related issues – you are not alone in this process.


Photo via: Dr.John2005


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