Dating and Intimacy with an Ostomy - Part 1: Background
There is the emotional component to undergoing such a life and body altering surgery. The physical unpredictability of it all can be very scary. Self esteem issues can definitely come up. Not to mention, if you are currently with someone, your partner may need time to adjust, not know how to handle it, or just act differently for his/her own personal reasons.
Then.. what if you are single? There’s telling someone you have an ostomy, then getting comfortable sharing details, etc.
I decided to break this topic down into several parts so I am sure I tackle as much as possible without writing a novel and boring you to death.
I want to share my experiences dating and being intimate with an ostomy in this post today. I think there is so much to talk about that I want to give you a little background information on me and how I handled certain situations so you have a better idea where my mindset comes from.
Living as a teenager with an ostomy
I had an ileostomy from the ages of 16-19 and then again from 24- present day. I won’t pretend it was easy for me living with an ileostomy as a teenager and young adult. In fact, it was far from it. I do, however, think I made the situation harder than it needed to be. While I don’t fault myself, I would like to go into some of those things I did (or did not do) that I think could have made a difference in how I felt about myself and how I perceived my ostomy.
When I was in high school I had a total of three female friends who knew in depth about my ostomy, and one male friend who I told through AIM (AOL Instant Messenger) the absolute bare minimum. I was intimate with two guys during that time; one I told the truth to over AIM and never went into any details and the other I pretended was a bandage and never took my shirt off. I did “hook up” with a decent amount of people during my teenage years (hey, trying to be honest here!) and I told anyone else who may have seen something, felt something, or I just had this notion that that was all they could think about (ha,) that it was a bandage from a wound infection I had after surgery.
I felt ashamed and hideous
Everyone in my school knew I had been very sick and certainly, anyone who I was close with in anyway knew I had a chronic illness and had multiple surgeries on my stomach of some kind. Some knew the name of my disease, but it was only one girlfriend who I actually went to school with that knew the details of it. Thinking back, I had about three other close girlfriends who I know I could have shared with but never did. I was always too ashamed, felt so different from my peers, and thought it made me hideous… so how could someone else not think that way about me? I couldn’t imagine a guy wanting to date me or even find me attractive at all if he knew I had a bag of crap hanging off of my stomach. I know that is an awful way to look at the life saving operation I had but in my teenage mind, I couldn’t help feeling that way.
A support system means everything
It was very comforting to have my best friend in high school be so understanding and help me whenever I needed help but also respect the fact that I just needed to be alone. She never pushed to visit me in the hospital because she knew how I felt about visitors. I could not have asked for a better friend during that time and I don’t think she ever realized how much better she made my world because of it. It was also nice to be able to share things with her about dating and intimacy, knowing that I could be honest about my ostomy and how it impacted things for me.
After my first real boyfriend and I broke up, he did comment on how much of a toll all I had been through took on me and also how it impacted him. It made me feel awful because of the way he said it- but something he has apologized for many, many times since. And at 16/17 years old, in the heat of a bad argument, who doesn’t say insensitive things? It did stick with me for a while though.
I had my temporary ileostomy through my first semester of college and told two of the girls I became friends with. I still pretended with a couple of guys that I just had a bandage on my incision. I never realized that most young people don’t even know what an ostomy was, let alone jump to the conclusion that I had one.
Sharing "my secret"
After my surgery at the age of 24 to have a permanent ostomy, I dated a couple of guys. One being about four months post-op. I was still very much adjusting to my new body and new normal. He was incredibly sweet and sensitive and prior to us having “the talk,” he knew I had been through the mill with my inflammatory bowel disease but didn’t know details.
I remember sitting in the car rehearsing to my dad what I was going to say to him when I thought it was time I be honest and share my “secret.” I was so nervous. I mentioned the night before that when we hung out the following day, there was something I wanted to talk to him about. A quick piece of advice: I should not have done that. It causes a lot of mind wandering and makes it out to be a bigger deal than it is.
Anyway, when we started talking I could tell he was incredibly nervous and had no idea what I was going to say. I reiterated some things about my disease and then said that the only reason I am still alive is because they had to give me a permanent ostomy. I went on to explain that an ostomy is when a piece of your intestine (in my case, small intestine) sticks out of your abdomen and it is covered by an appliance or a bag, where waste can be collected. I went on to show him more in depth about the appliance and what was on my stomach.
I will never forget his reaction:
“Okay.. So what did you want to talk to me about?”
I was baffled! It was such a huge deal to me and he didn’t even think this could possibly be the topic I wanted to discuss with him. When I told him this was it, he looked both relieved but also mad given he was up all night worried about what it was. He gave me a huge hug and went into all the things he thought I was going to say (For example: I had been in jail, severely injured, or killed someone). We laughed about it and then continued on with our day.
I have been dating someone for over three years now who actually knew about my ostomy before our first date because of my blog. He is also an advocate in the community which makes him understand things that most cannot. Even though he is no stranger to dealing with bowel issues (he is the caregiver of someone who has IBD), the first time I was too sick to empty my own bag and he had to do it for me in a bed pan while I was laying down was mortifying. I had no idea how someone could still find me attractive and see all of that.
But, as cliche as it sounds, the right person won’t care. I have been lucky in that since I was diagnosed with ulcerative colitis at 13 (and wasn’t doing much dating before,) that I flocked to nice guys, or at least ones I thought could handle serious things.
I wanted to give you guys a little backstory on my dating history with an ostomy. Obviously, we all have different experiences and go through different challenges, but this happens to be mine.
Does exercising regularly help in the management of your symptoms?