The topic no one ever talks about

I'm talking about sex.  Sex with an ostomy.  Sex with a permanent Hickmann catheter.  Why does this topic make people uncomfortable?  It's a basic human need, yet does your MD bring it up with you? Mine doesn't.

I have had my ostomy now since 1995 and I'm not going to tell you my number (HAHA) but I will tell you about different reactions men have had when I tell them about my ostomy.  Being single and having a chronic disease, an ostomy and an IV? It's like having the plague back in the day or leprosy.

I have been on a date before where we had a great time, thought we liked each other.  At the end of the evening, I told him about my ostomy.  I refuse to waste my time with someone who can't handle it.  The look on his face I will never forget.  The look of disgust.  You have poop hanging from your abdomen?  Do I have to say that he never called me again?

Another guy I dated had a weird not quite love of it, but I guess to prove that it didn't bother him, he would kiss my pouch and tell me it didn't bother him. I thought it was sweet.

Another guy loved me for me and never saw my illness.  Sex with him was just incredible because of that one fact.

Now lets talk about sex.  Yes the naked sex.  I don't do any hiding, I used to think I would get a tube top and cover up my pouch with it.  I never got around to doing that.  I do make sure I empty it first, and not have sex after a huge meal-come on now, do you want to be interrupted? I also kind of fold mine up so it's not in the way, and most of the time, I prefer to be on top.  This seems safer to me that my pouch won't get smooshed by the guy being on top. But I sometimes am on the bottom, I just make sure he leaves a space.  My IV? I just wrap it behind the pillow or behind my head. That really doesn't get in the way. It only gets in the way if you left it.  The mind can do wonders if you let it.

I have never had an accident during sex.  By this I mean having my pouch leak or explode.  I was married with my pouch and it never was a problem.

What you really need to make sure is that you are comfortable with yourself and your body.  If you are not comfortable, you aren't going to make him comfortable.  If you get vibes that he isn't keen on your pouch, why go through with it anyway?  If the man loves you for you, he won't even let the pouch get in the way. He needs to have a sense of humor. The possibility always exists that your pouch will leak and make a mess during sex.  If he seems to be repulsed by that, why are you with him anyway?

I tell myself there is a man out there for me.  But I have to be honest here.  I am really lonely.  It's very hard to meet someone when you go to bed so early in the evening because you are hooked up to IVs and have multiple extra body parts. I still cling to the hope that there is someone out there for me.  I still refuse to waste my time on someone who can't handle my illness.  I met someone online, states away and it's nice to have someone to pass the time with. But reality is, he's there and I'm here.  I did tell him about  my illness and he didn't run away.

But when you are texting, is that really real?

The story I laugh at on the outside but kills me on the inside

I don't remember the year, I don't remember the place. What I do remember is I hadn't been diagnosed yet and I was having bad horrible bouts of uncontrollable diarrhea.

My family had gone on a trip.  One of the places we visited was a high rise building.  We went all the way up many floors on the elevator.  All the way up to the observation deck overlooking the city.  I remember that I had been holding my bowels in the best I could, trying not to ruin the family vacation. All of a sudden, I just couldn't hold it anymore.  The problem was there were no bathrooms on that floor. I had to get back on the elevator and go back down.

My family was upset that we had to leave so fast and in such a hurry.  I was in so much pain, trying to not have an accident. I finally made it to a floor that had a bathroom.  I ran and barely made it in time before I would have made a mess of myself.

Now we all know that sh*t stinks.  It's just how it is. But with Crohn's disease, it can be very foul smelling. Worse than normal.  Well this time it was so foul that the smell went all the way through the floor we were on.  My family started laughing at me for stinking up the place.  I laughed along with them.  At the time, it was a joke when we farted.  Was a game to our family.  So they didn't know that I was dying inside of embarrassment and humiliation.

Years later, my family would periodically tell that story of how I fouled up a whole floor of a building. I never say anything, I just laugh along.  But inside, it hurts and it hurts a lot.

It's been years since anyone has brought that up again.  So I really haven't thought about it lately.  I just wanted to share this with you, if you are reading that if this has happened to you, it's ok.  I think that if I ever hear that story again from my family, maybe I will have the courage to tell them that I have never thought it funny and that it truly hurts me when they laugh at my expense.

Please don't think I have a bad family.  I don't.  My family is awesome and has been there for me throughout my life.  They didn't know it hurt me, I never told them it did.  So I bear part of the blame for that.

This is just one of the many stories that have happened since I was diagnosed so many years ago....