Part 2: How Having an Ostomy Affects Relationships

A couple days ago, I wrote a little background on my love life as an ostomate here. It was the first time I talked about this part of my life in any detail on my blog, and to anyone other than incredibly close girlfriends. It felt so great to open up and made me realize that while this is clearly a very personal part of one’s life, if we don’t share our stories, we have no way of knowing we aren’t alone with our thoughts, fears, anxieties, the way we process things, etc. There is so much that goes into sexuality, relationships, and intimacy so I thought I would divide this topic up into three parts. The second being how I believe having an ostomy impacts a relationship.

As I mentioned earlier in the week, I have dated a number of guys but was only able to be completely honest with a few. The guy I dated in high school was my first real experience “testing the waters.” I was very glad this person was accepting of my ostomy and while we remained friendly for a while after, we actually were in one intimate situation after we broke up where he touched my stomach then said “Sorry, I completely forgot.” I spent the remainder of the night wondering how someone could forget, given that it was all I could think about! Just goes to show you that while it may be at the forefront of your mind, it most likely isn’t in the mind of your partner.

I feel like having an ostomy at 16 made me develop a keen sense of what guys had the ability to potentially handle my situation, and who didn’t. I could sense it within ten minutes usually.

Having an ostomy allowed me to connect with my partner on a completely different level. It forced me to share something intimate about myself since it turned my invisible illness into something visible that pretty much had to be talked about if I wanted to achieve any kind of honest relationship.

While I didn’t have an ostomy when I dated my boyfriend in college, I did talk to him about the possibility of it because I was afraid of what may happen if the kock pouch failed (again.) I will never forget the first time I stayed at his house. He lived about five hours from me so on school breaks, we took turns going to see each other. Since it was an ordeal to get to one another, it wasn’t a quick visit and I was so afraid to eat, so nervous about something going wrong with the kock pouch and winding up in the ER of a random hospital out of state with people who barely knew me, and just so hyper aware of everything with my body that it was impossible for me to sleep too.

On about day three of pretty much starving myself at his house, I finally laid down on his bed and for the first time responded with “no” when he asked if I was okay. I then proceeded to tell him while in tears what I was going through that weekend and how hard it was for me to be at his house. I felt awful since I knew both him and his family were doing everything they could to make me comfortable but once I began talking about what my body and mind was going through, it brought us closer. He began talking to me more about some of the difficult things in his life and we had developed a much more open relationship. Reminds me of a blog I wrote earlier in the year about the importance of showing a certain level of vulnerability in relationships/friendships called   I’ll Show You Mine If You Show Me Yours

When I was being interviewed for a book about adolescents and children with IBD, I was asked if I felt comfortable talking about relationships. I then proceeded to tell this incredibly smart woman, who was also a fellow IBDer, a little about some of my relationships. One of her responses was so spot on I couldn’t understand why I didn’t think of it myself. Or maybe, I just didn’t want to admit what I put up with for so long.

She said to me “wow, you must have really lacked intimacy in that relationship.”

I had a boyfriend who had no idea I had a kock pouch. Had no idea I ever had an ostomy (even though we weren’t intimate at the time.) We were together on and off for a while.  Don’t even know the exact time frame since there was a lot of grey areas in that relationship. All he knew was that I had been through a lot. I truly don’t know what else he bothered to retain. I remember so many times I tried to gauge if this would be a good time to talk to him about it. I even left his house one night after eating something “bad” and sent him an email explaining why I left abruptly, with the hope that it would open the door for further discussions. He never responded and I never acknowledged it.

Point being, the relationships where I had an ostomy or where the possibility of me needing to undergo this type of surgery was discussed were the closest relationships I’ve had. When I look back on my relationships, the ones where I was forced in a way to disclose this aspect of my life to my partner were the ones where I felt the most connected. They were the most real.

Having an ostomy can definitely change a relationship but in my experience, it has always been for the better. There will always be some people who can’t handle your situation but you have to ask yourself at that time, if he/she can’t handle an ostomy, do I really want this person as a partner in my life? How will he/she handle a child getting sick? Or a parent? What about financial stress? Will we be able to communicate? Will we be able to work together as a team to tackle whatever challenges life throws at us? Will he/she run when things get too difficult?

I would venture to guess that there isn’t one person who I’d think was “partner” material if they couldn’t wrap their head around the fact that I had an ostomy. It is shallow. It is superficial. I know I come at it from a different point of view but I try to think about if a guy I was dating told me about it. I would have questions but I would think he was strong and I wouldn’t give a rats as* how he went to the bathroom.

I know having an ostomy is frightening especially when it comes to how it will affect your significant other. Or, if you aren’t currently dating someone or married, there is always the question of how others will see you. You want to be attractive, desirable, and looked at the way you were prior to having an ostomy.

I have had an ostomy for three years as a teenager, and two years with this second one, and the relationships where I was able to communicate about my ostomy or the possibility of needing this type of life altering surgery were by far the most complete relationships I’ve ever been in. There was communication, respect, understanding, and a real partnership that only comes from allowing someone into one of the most intimate parts of your life.

I do think you’ll be surprised at how people will react to your ostomy once you feel physically and/or emotionally ready to be in the dating world.


Part 3 – Intimacy with an Ostomy

  • val0525

    When we can truly be completely honest about ourselves, and our feelings, that is when we have an intimate relationship. Intimacy is so much more than sexuality. Intimacy is all about the other things in any relationship.

    Proud of you for another incredibly written post.


  • Matthew Dobos

    So true. I’m still surprised at some how people react to finding out I have an ostomy, and I’ve had mine about 25 years now. Sometimes the surprise is a good one, others times not so much. People I’ve had relationships with are always fine with it- if they weren’t fine, I’d usually see that early one way or the other and then move on. I’m still not sure if that’s a good thing or not. But the nice thing is knowing there are lots of people out there who won’t think less of you just because you have an ostomy. I cannot imagine having to do the high shcool years wearing an ostomy (I had mine just afterwards), and it’s remarkable to be so open about it in a public forum like this. Truly inspiring Maris, keep up the great work!

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