No Different

Throughout this process of having Gob installed, every single nurse I have worked with has been used to working with people who are “normal” except for their ostomy.  They were talking to me and saying really silly things for someone who has Ehlers-Danlos and Gastroparesis.  For example:

“You can still do yoga!”  (No I can’t, it’s contraindicated in Ehlers-Danlos.)

“You can ski!  I even know someone with an ostomy who cliff dives!”  (Right.  I’m sure you do.  I’m sure they aren’t as fragile as me either, but okay.)

“You’ll have to be on a low residue diet for the time being, and you should never eat corn, seeds, or nuts, but in time you’ll be able to eat anything else that you want.”  (No.  I have Gastroparesis, which is incurable in Ehlers-Danlos Syndrome, so I will have to eat low residue forever, and as far as plants go I can only eat only well blended thoroughly cooked ones.)

It was almost as if no one had looked in my chart to see why I was getting this ostomy in the first place.  I guess most people aren’t like me.  Gastroparesis is not a common reason for an ostomy.  Still, it’s the reason I have one.

The things I’ve been worried about have nothing at all to do with whether or not I can participate in contact sports or bend myself into pretzels or do whatever ludicrous things I’m not supposed to do anyway.  (And while I wasn’t eating raw corn, yeah, I’ll miss tortilla chips.)  The things I was worried about were more related to the way Master Pravus and me play and while I knew we’d find a way to be intimate, I was definitely worried about kink.

Oh yeah, sure, everyone wants to tell you up front that you will absolutely still be able to have sex.  I wasn’t worried about being penetrated.  I was worried about bondage and “wrestling” and rough contact and whether we’d need to be extra careful not to flog Gob, (even in an occasional wrap).  I was worried about things I’m not going to discuss with early-twenty-something nurses who likely have no clue what I’m talking about (and even if they knew, it’d probably be sexual harassment to discuss it).  I was sure we’d figure it out in good time, anyway.

When I came home, I was very gentle with my ostomy.  I would be careful when standing and sitting, and lying down, and sleeping, and walking and sitting in the car.  I was way too sick when I first came home for Master Pravus to play with me anyway, because I couldn’t even shower without help, or raise or lower myself from sitting to lying down.  It took about two weeks before we started playing, and even then, very carefully.

Then last Friday Master Pravus came home from work, and I was laying on the futon naked.  He came over and started to tickle me.  I giggled and yelped and “struggled” and laughed.  I didn’t think for a single second of Gob, or of my bag.  I didn’t worry about hitting it or laying on it wrong, or anything like that.  For a second, I completely forgot I even had Gob.


I sat up, and teasingly hid behind a pillow, my hair a wreck from bouncing this way and that in fits of the giggles.

Master Pravus reached over to get the camera and take a picture of me because he said I looked “so cute” like that.

It was in that moment, that I knew that we’d be more than alright.  I realized that no matter what, Gob isn’t going to stop us from being playful, or having meaningful intimacy.  Even if intimacy is very different for us than it is for what every nurse was describing.

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