Melvin & Me, Part 19: The Honest one where I Talk about Sex

There are a number of questions regarding life with an ostomy that come to mind for people, some of which people do not end up asking because it seems a little too personal or too "gross" for casual conversation, despite my open invitation and assurances.

For example:  does that mean your butt is sewn shut?

In my case, yes it does.  If there is a possibility of reconnection, the rectum has a small internal pouch--this area still generates the mucus that lines your intestines even when separated from the rest of them, so some material may still exit out. Different ostomy setups can be partially connected where most fecal matter is going into a bag but some is exiting out the anus.  But if there is no plan to reconnect or any need to keep the anus (which does not produce hormones nor is required as support for other systems), then why keep it?  In my case especially, this was the area that was causing me the greatest grief and the most pain--the whole point of moving to colostomy was to remove this part of my body.  

Could you get a rectum transplant?

Nope.  This is a very specialized muscle, and it needs to be able to stretch and then return back to its shape.  Scar tissue around that area is not preferred, since that will certainly inhibit the organ's flexibility.  More importantly, though, Crohn's patients have a high propensity of complications with surgery in the area--in previous discussions about removing old scar tissue, I was told quite firmly that they only touch was it absolutely necessary when it comes to the rectum and anus of Crohn's patients.  It would be a high risk situation, and I have already experienced what the worst case scenario would be from my failed bowel resection.  No one was keen to put me through that again.  An ostomy is a perfectly livable condition, if annoying from time to time; trading that for a "maybe" and a whole lot of uncertainty was not something I could tolerate.

The one that is perhaps even more sensitive:  can you still have sex?

The short answer is yes, vaginally and orally--anal is forever out.  In my particular case, the rectum, the last bit of the large intestine, was EXTREMELY inflamed.  In short, it hasn't every really been an option in my particular case.  All of that diseased and stressed tissue made things interesting for a while, certainly, meaning a lot of pain and therefore a lot of caution, both before and after surgery.  The rectum could not stretch as much, which meant that there was sudden and immediately urgent need to go to the bathroom--effectively, I had a short leash to be close enough to a bathroom; I still instinctively notice where the bathrooms are when going into a new building, when possible.  And then actually expelling fecal matter was a painful process, more often than not, which only seemed to inflame the area more.  Regarding sex, then, the vaginal canal is rather close to that inflamed area anatomically speaking so all vaginal intercourse had to be approached with some delicacy, that disturbing one would disturb the other.  Every time we would try, I was on high alert, trying to make sure that my body was not trying to warn me of something catastrophic or otherwise if pieces were too inflamed to try anything physical today.  And as recovery continues, sex is still a tricky subject although improving.

With my first round of ostomy, back in 2012, there were some initial hurdles.  My body was just a mess with the systemic infection, first of all.  But emotionally it's a big deal to suddenly have your intestines poking out of your abdominal wall and try to look at it as a good thing.  There's a lot of self-consciousness, not only for your safety but also about your appearance.  Was I still wanted?  Would my husband find me disgusting?  I mean, I thought it was disgusting on occasion, and I have a high tolerance for this.

Andy was quick with reassurances, but I can't say that I always believed them.  I felt broken or wrong or undesirable or too difficult or overwhelmed or any number of other things that only came out as grief.  Part of my sense of self had died, and there was some grieving to do there.  Would I feel sexual when I figured out the new me?  Was it worth the hassle of sorting out all of the new and impossible emotional weight to try?  Particularly in 2012, I didn't have many spoons to go around on a good day--I needed to spend these more on day-to-day maintenance over any kind of social or romantic expenditures, particularly regarding sex where I couldn't really gage how much energy that was going to take, either physically or emotionally.

And then there was the physical act itself, the sound of crinkling plastic between our bodies with every movement, a constant reminder that it was there, always between us.  Once, the bag popped about halfway off of the flange.  Thankfully, no major bag contents spilled out on the bed or us, but the anxiety of the near miss definitely ruined the mood; there were a lot of tears involved.  I remember feeling so broken in that moment:  incomplete and inadequate and undesirable and broken.

Mechanically speaking, we could only work as much as my body could handle, within the realm of where my energy was.  Emotionally speaking, there was enough happening that I could only suffer the attempt and failure enough times.  Even on a successful instance of sex, my anxiety was a constant and growing specter--it's tough to enjoy sex when you're on high alert, monitoring every part of ones body as a list of potential threats.

Andy and I talked through different components and thought to at least minimize the anxiety of the bag as much as possible.  I have had a couple of different options that I wear for ostomy support.  One was the basic support strap that came with all the rest of my first ostomy supplies.  This attached to left and right sides of the bag, close to where it clips into the flange and holding it more securely in place, a thin, tan elastic belt that keeps it clipped to the flange and distributes the weight a bit when it gets full.  When I had the ilieostomy, I wore this more often, but with either colostomy I have preferred wearing my Stealth Belt which is a fabric piece that secures around my middle, a zipper pocket for the bag itself for easy emptying.  It keeps the bag wrapped to my side, even muffling the crinkling sound.  These also have the benefit of some fun colors and patterns to make it a bit more fun at the very least.  They even have lace options, if one wanted to try to match lingerie.  There are caps you can buy, too, that just clip on in place of the bag like a Tupperware aluminum can cover--I haven't tried these yet because the idea wigs me out a bit.

And otherwise, I do have to remember that there is a hole in my abdomen, meaning that my core muscles are disrupted.  I'm trying to strengthen these where I can, but there will always be some extra caution in how I move and attend to those areas.  This means that even when particularly excited or involved, I still have to keep at least some of my attention on what my body is telling me, watching for any potential problem.

...which cycles us back to that anxiety.  Now that my body is in undeniably better condition and that inflammation is greatly mediated, everything should be fine, right?  Well.  I still retain parts of that survival mode.  I keep that hyper-alert approach not because I want to but because that was something that I was conditioned to do--that's something that helped me survive, that helped me to protect myself.  Awareness of one's body is a good thing; hyper-awareness is problematic.  It's so ingrained at this point.  It's how I manage part of my condition.  I don't trust my body, with good reason.  I have gotten to a point, at least, where arousal I instigate (i.e. masturbation) is not interpreted as a threat, but when I am not in tight control of all the factors (i.e. a partner is doing the stimulating), arousal is very frequently interpreted as a threat.  I freeze; I panic; I flee; I shut it down; and poor Andy is wondering what the hell just happened and feeling unwanted.  Andy has always been responsive in the sense of watching my face and body for cues, immediately stopping when I ask, but I can't pretend that the situation doesn't frustrate him, too, which leads to more guilt and more anxiety and a rather vicious shame cycle.

In short, my ostomy does not inhibit my ability to have sex at all (and never did--only my Crohn's symptoms did).  My stupid brain does, though.  And there are reasons for it, so many logical reasons for that conditioning and that training and everything that I had to do to survive.  The trick is meeting that shame and anxiety with self-compassion.  Most significantly, I need to disconnect this particular situation as a personal failure.  It's just going to take time.  Andy and I have graduated from "none" to "some" after my surgery, which is a huge accomplishment.  We've set quantifiable and qualitative goals to our intimacy, and we're continuing to talk about it.  It's just going to take time.