On World Ostomy Day, I posted a question on The Crohns and Ulcerative Colitis Diaries: Living with IBD facebook support page

What is one question you’d like to ask someone who has an ostomy? Or if you have it yourself, is there something you’d like to ask your fellow ostomates?

Most of the questions I got were about how having an ostomy affects intimacy, relationships, and sexuality. I answered the other questions on the page that day but thought this particular topic deserved some more attention.

I just want to start by saying that what I am going to talk about here are my own personal experiences and mine only. I also want to acknowledge the fact that I truly despise reading cliché posts from people so if I say something that makes you think “yeah, yeah, heard it and I’ll believe it when I see it” – try to look at my words a little differently if you can.

Background about My Love Life as an Ostomate- Part 1

Someone used the word “sexuality” during the discussion and made it clear that it was different in her mind than intimacy and being okay in relationships. For clarification purposes, I am using this term to mean being confident in sexually intimate situations.

Having an ostomy changes the way you look and feel about your body. How could it not? You aren’t supposed to have an external appliance taped on your stomach that covers a piece of your intestine. That isn’t the norm. It isn’t what society says is acceptable and it isn’t what anyone wants.

When I had my ostomy for three years as a teenager, I couldn’t have been less comfortable in this department. I told my boyfriend of a few months when I was 16 over AIM (AOL instant messenger) very briefly that I had a bag since I was trying to be honest, but the reality was I couldn’t handle an intimate relationship. I wasn’t comfortable with who I was and therefore, I wasn’t OKAY being intimate with him, or anyone for that matter at that time. The relationship ran its course and while I do believe he tried to understand as much as he could, given the fact that we were both in high school, neither one of us were really able to deal with the emotional issues this took on both of us. I could barely wrap my head around what was happening with my body, so I couldn’t even explain it to him fully.

I dated a few guys after him when I had my ostomy and I don’t know if I just don’t pick smart guys or maybe my parents were right all along but I got away with “it’s a bandage” for such a long time. I automatically assumed that if someone touched my stomach and felt something, they would jump to the conclusion that it was an ostomy and be grossed out. That couldn’t be farther from the truth. No one, I mean not one person – including the guy I lost my virginity to (I had a shirt on) knew I had a bag.

I had a kock pouch from the ages of 19-24 which is another post/story entirely so I’ll fast forward a bit until I got my second ostomy at the age of 24.

I had my surgery at the very end of July 2011, and I started dating someone in October of that year. When it came time to tell him about my situation, I was petrified beyond belief. I wanted more than anything to be able to have an open and honest relationship with this guy and I wanted him to accept me for who I was. I had spent the previous years hiding everything about myself, my body…literally everything and I couldn’t do that anymore.

I remember texting him the night before we were supposed to get together and told him I had something important to talk to him about but wanted to do it in person. When I went over to his house the following day, I remember sitting in his driveway a little bit rehearsing what I was going to say to him with my dad on the phone. And then I just told him the truth.

I will never forget where we were and the look on his face. It was this blank stare and just said in a semi loud tone “That’s it? That’s all you had to tell me?”

When I told him that was all I had for him, he gave me a huge hug and said he was pretty much up all night thinking I killed someone, had been in prison, and named a bunch of other heinous things he thought I was going to tell him. He took a few sighs of relief, asked me a couple questions, and then we pretty much never talked about it again aside from some food related things. The day carried on like it always was and it truly never mattered.

For those of you who know me personally, you may already know that I am currently dating a wonderful man who also could care less that I have an ostomy. He has helped me to see that it is such a small part of me and while I may be sensitive about it, I am honestly starting not to care that much. It is definitely present but I really from the bottom of my heart want to thank Frank for ingraining in my head that I am so much more than ulcerative colitis and an ostomy.

To go back to my original statement earlier in this post about not wanting to sound cliché, when (not “IF”) you find the right person, or even a “right now” person, an ostomy will not make or break a relationship. It seriously won’t. And this is coming from someone who fought for two years to allow her parents/doctors to go through with a surgery wrought with complications in an effort to rid herself of the bag. It is also coming from someone who continuously was so hell bent on not living life as an ostomate that she continued to endure more surgeries so she would be able to live without an external appliance.

I hate speaking in the third person but I really want to ingrain in anyone who reads this posts mind that I am not someone spewing out things just to say them. I have been where most of you are. I have read posts like this and thought that it was great for whoever was writing it but the question “who is going to accept me?” was in my head constantly. So while relationships don’t work out more often than they succeed, people do walk away, and things do change, it is perfectly understandable why your mind would think your IBD/ostomy was the reason for it. Please remember that 99percent of the time, it isn’t.

Part 2, I am going to be talking about How Having an Ostomy Impacts Relationships

Part 3, I will go into detail about Intimacy with an Ostomy