Dating and Intimacy with an Ostomy - Part 3: Adulthood

Now that I have shared a little about my background having lived with an ostomy from the ages of 16-19 and then again from 24 until present day, as well as offer some advice and thoughts about my teenage years, I want to talk about how things have changed as I grew up.

From 19 until 24, I lived with a kock pouch which is a continent ileostomy. I had no rectum or anus so going to the bathroom like a “normal” person was out of the question but with this surgery, the stoma looked inverted and was covered by a small, flush with my skin bandage. I would stick a catheter in the stoma when I was in the restroom and that is how waste would come out. No appliance needed which made it much easier to hide and therefore, my love life was drastically different.

After my surgery to have my second ostomy (this time permanent,) I wasn’t sure how I would be in terms of dating. I remembered how awful it was as a teenager with all the secrecy and just hoped things would be different. I hoped I would have a different mentality and the maturity of others would also help that process along.

And I was right.

A little over a year later, I shared with anyone who would read my Facebook note or blog, that I had an ostomy. It took me a while to post pictures of my ostomy but eventually, I found the courage to do that as well. And now, while I will never be okay with having one, I have accepted that it is part of me and I wouldn’t be alive today without it.

Once you accept some of the things I said above, it makes dating easier. When you are more secure in who you are, it makes everything easier actually. I also knew that anyone who was not okay with my ostomy was a shallow individual and clearly, not the right person for me. I no longer feared the rejection in the same way because I knew that this wasn’t in my control and anyone who had an issue with it obviously did for their own personal reasons. It wasn’t ME who was being rejected which changed my outlook and increased my confidence level over time.

I don’t want to repeat what I wrote in Part 1 about my background so please feel free to read it if you want some of the blanks filled in, or some more details about my love life and how I handled certain situations.

In this article, I want to address some common questions, thoughts, and fears I find in the inflammatory bowel disease community a lot.

The five most common concerns/questions I see from people who live with an ostomy are below and I want to try and answer those or offer my opinion at the very least. Obviously, there are a lot more questions and thoughts running through our minds so feel free to comment below and either I, or someone else, will be happy to discuss it with you.

Question 1:

When is the right time to tell someone you are dating that you have an ostomy?

There is no “right time” to tell someone about your ostomy. Some people prefer to lay all their cards on the table within the first couple of dates in order to make sure that person is okay with his/her situation before things get too serious. Other people tend to wait until they can’t hide it anymore. Both approaches are understandable and neither is right or wrong. It also depends on your comfort level, the personality type of the person you are trying to develop a relationship with, the types of situations you have been in on dates, etc. I wish I had a one size fits all answer for this common question but it is truly whenever you feel it is the right time. That could be the first date or six months into a relationship… the choice is yours. Personally, since I am not a kid anymore, I like to be as honest as possible when I feel the timing is right because I don’t want to waste my time.

Question 2:

How can I still feel sexy while making love to my partner/spouse?

If you are in a good relationship, having an ostomy should not change the way your spouse looks at you. If they found you attractive before surgery, they should find you just as attractive after surgery. I know you are probably thinking “how could it be the same? My body was changed drastically!” and I hear you loud and clear. I guess the point I am trying to make is that things may be different and take some getting used to, but if you are in a supportive, loving relationship- your ostomy should not change the way your spouse or partner looks at you sexually.

It is important to keep in mind that he/she may not understand a lot and be afraid to ask you. He/she may also be worried about hurting you. When my boyfriend was leaning on my appliance for a little bit all of a sudden he got up and was like “OMG I AM SO SORRY!” when I never said anything. It wasn’t bothering me otherwise I would have, but he assumed he was hurting me. Opening the door for an honest, real dialogue can help enormously. Talk about your insecurities and let him/her know that it is okay to ask questions and be unsure of things. Let your partner know that you acknowledge what a big change it is for him/her as well and you will get through it together.

Question 3:

My partner and I are not intimate like we used to and I think it is because of my ostomy. What can I do?

Ask your partner about it. He/She could be afraid to push the situation if you have been ill for a while or just had surgery. He/She could be afraid of hurting you. Your partner also may have questions or read something on the internet that freaked them out - and could be completely inaccurate.

Also, are you putting out a vibe that you aren’t ready to be intimate? Or, that you don’t feel comfortable with your body? If so, that could be impacting things with your partner that you don’t realize. Bringing it up, while embarrassing for many (me included!) is really the way to get to the bottom of this and alleviate some of the wandering mind so many of us have.

Question 4:

Are there any special bags, lingerie, or other things for ostomates during the intimate times?

Yes! There are intimacy pouches which are meant for those who wear a two piece appliance. They are very small mini closed end pouches, meaning they do not have a clip. It is one that you take off and throw away when it gets filled up. This can make it so the appliance is not hanging down as much, and the clip doesn’t get in the way. I have tried this and for me personally, I prefer to tape up my ostomy but I know many ostomates who use intimacy pouches (also great for swimming!) and love them. You can find them at any place you order your regular supplies.

There is also special lingerie or underwear for people with an ostomy. Vanilla Blush has great products both for this time and for everyday wear.

Some people also prefer to keep their shirt on during this time… which is completely okay. I used to do that as well and with time, you become more comfortable, and that becomes a distant memory. Do whatever will make you feel the most attractive and at ease with your body. There is no right or wrong to any of this, nor is there any timeframe but your own.

Question 5:

Is there a better part of the day to make love; assuming it isn’t a spontaneous moment?

In the beginning of my relationship, I never wanted to make love after eating a big meal. I know that is the case for a lot of people who don’t have an ostomy but for me, I didn’t want to worry about the bag filling up. In fact, if it was during that time, it was all I could think about. So I tried to stir things up, so to speak, more in the earlier part of the day, or before eating dinner. As time went on, as long as I was feeling okay, I stopped caring. I became much more secure in my body and my relationship to know that I wasn’t being judged, the fact that I had an ostomy was far from a secret, and it just was what it was. It was a definite evolutionary process though.

There is another question female ostomates often ask and that is “will intercourse be painful?” and I can’t really answer that for you because everyone is different. I know a lot of doctors will say that depending on the surgery, the internal shape of the vaginal canal can change, which can cause pain during intercourse. That has not been the case for me… for whatever it’s worth. If you find intercourse to be painful, speak to your surgeon or gynecologist about it. You never know what can be done to help make things easier for you.

I know this is a lot of information and a lot to process.

Please know you are not alone if your head is spinning. There are more people than you (or I) even realize who are thinking about these things, worrying about them, and wishing it could be discussed in a confidential setting. We are always here for support and will do our best to answer any questions you may have - and address any concerns as well. Don’t be afraid to share. The more we open up about our experiences, the better it will be for us and we will help other people who haven’t yet found their voice, to know they are not alone, in the process.