Dating and Intimacy with an Ostomy- Part 2: Teenage Years

As a follow up to my first post about dating and intimacy with an ostomy I wanted to talk about and address some of the more ‘hard to talk about’ things in the life of a teenager who has an ostomy. I also wanted to offer some tips and/or words of advice based on my experiences.

First off I want to say that I am not someone who is comfortable talking about my sex life. I think it is fun to speak generally to girlfriends about certain things but I am someone who believes what goes on between two people in that respect, should stay that way. Having said that, I do know so many people in the community have questions about intimacy with their ostomy, or are trying to understand how their love life might be affected should an ostomy be in their future.

Second, because there is so much to say about this topic, this article turned into one more geared for teenagers or caregivers of teenagers. If anyone is curious to read about how things have evolved for me in my personal life, I invite you to read it all, but I did want to give a heads up beforehand. My next article will go into my feelings, thoughts and experiences as an adult.

My Teenage Years

As a teenager with an ostomy, I looked at so much of the world differently than I do now that I am older. I even look at intimacy differently. My first real boyfriend, who I mentioned in part 1, was the first person I was intimate with and he was also the last for a couple of years. I wasn’t ready to be so close in that way given all I had been through. I felt violated (not by him but by all of the surgeries and medical tests/procedures I had to go through) that I just wasn’t ready. For the next few months I always had an excuse until we broke up.

Then, two days before my high school graduation, I was intimate with someone who I liked but knew I would never ever get attached to, only because I wanted the experience. Not to be TMI but since there were some “technical issues” the first time, I wasn’t sure if I had truly lost my virginity. WOW.. I cannot believe I am writing this.

Anyway, we had been dating for a while, sort of on and off, and had a very complicated relationship. I had absolutely no idea what love really was or what the act of making love should be. I know most teenagers don’t have a real understanding of that but for me, I also felt this huge need to experience all I could because I had missed out and was continuing to miss out on so much. I had the mentality of if the opportunity was in front of me, don’t walk away because who knows what could happen with my health.

I am not sure if anyone reading this is a teenager who feels this way or can look back on their teenage years and remember feeling similarly but if you do (or did), I wanted to share how I always thought about these things when I was younger. You are not alone and I also don’t want anyone to feel like they are less valuable, are not as attractive, need to settle, or do anything they don’t truly want to do because their ostomy makes them feel different. That is how I operated during that time so I cannot blame you if you feel that way - and certainly don’t judge. It is just something to keep in mind, that’s all. I have complete faith any teenagers out there or parents of teens reading this, that it all evolves naturally. You cannot force a certain way of thinking.

Some tips/thoughts I have to keep in mind for teens…

No one is assuming you have an ostomy. Most people don’t even know what that is in high school so try to remember that. You are understandably way more focused on it than anyone else is.

Be honest with as many people as you feel comfortable with. It will help alleviate so much of the burden and energy of keeping such a huge secret. Also, maybe your friends can help you figure out the best clothes to wear for a date, or if you are in a relationship that has progressed further, talking about some of your fears with your friends can help make the experience a little easier for you. They also might have some suggestions you may not have thought about. Or, maybe you are about to make a decision that is out of insecurity - and you need people close to you to help you to understand that. Friends can also really help lift you up and when you are feeling better about yourself, anxiety is a little lower, and experiences are generally more enjoyable.

I know how hard it is to share with a teenage boy or girl that you have an ostomy. I am not going to say “be honest with everyone you date” even though we all know in a perfect world, that would be the case. Our insecurities get the best of us and that is completely understandable. It is why I hid so much from most of the people I dated. So, what can you do if you don’t want to reveal all the nitty gritty details? Either tell the guy/girl you are dating that you had to undergo a lifesaving operation which culminated in you needing an ostomy OR pretend it is something else and keep your shirt on or bring it down around your stomach.

The problem with telling someone you have an ostomy and letting it go is that if he/she is curious, they probably will start looking on the internet which isn’t always a good thing. If you take a little time to explain things, it might make it less scary and begin an open dialogue which could bring you two even closer. Having someone just google “ostomy” can oftentimes be a lot scarier than if you explained it yourself. I always got away with saying it is a bandage from a surgery I had to cover my incision. If I got any questions about it, I would say I had a wound infection and it is just there to keep it clean. And that would be the end of it.

Remember that you are not just your ostomy and even though it may take over the majority of your thoughts and it is something you are hypersensitive about, everyone that knows and loves you isn’t thinking about it. For example (and sorry for all the super personal things I am sharing!) my first boyfriend who knew I had an ostomy and I got back together for one night and when he touched my stomach and I gently pushed his hand away he went “oh right! I completely forgot.” We are thinking about it and focusing on our ostomy appliance so much more than anyone else. I know that is hard to believe as a teenager - I never did- but coming from someone who has lived through it, I can tell you that that is absolutely 100% the case. If I believed that, I wouldn’t have been so on edge all of the time. Again, I know no one can make you think or believe anything. It is something you have to come to on your own time. And you will. I just wanted to give you something to think about.

Start connecting with other people who have inflammatory bowel disease and/or an ostomy if you haven’t already. Don’t be afraid to ask questions about dating and intimacy. Most people have thoughts, fears, and questions about that topic and are waiting for someone else to bring it up. Trust me, you won’t be alone if you bring the topic up to other people who suffer from either Crohn’s Disease or ulcerative colitis, or who have an ostomy. Closed groups on Facebook are great for that since your question will only be seen by others in the group and not everyone you are Facebook friends with. Dating, relationships and intimacy are important things in life and the sooner you start understanding more, connecting with other people so you realize you are not alone, getting tips from others who have been there, venting if you need which is part of the process, etc the sooner you can develop more confidence until eventually, you may become open about your ostomy. I know if you are a teenager reading this you are probably rolling your eyes which is what I would have done, but, it can happen. And it will on your time frame.

What have your experiences been as a teenager with an ostomy? Have you found dating to be very challenging? What about the intimacy aspect of things? Are you able to share with peers about your situation or is it something you try to keep to yourself? Do you have any tips for others who may be adjusting to this life altering surgery and are worried about how people who they are romantically interested in will perceive them?

Don’t forget to keep an eye out for Part 3 where I talk about dating and intimacy as an adult.

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