Brian's Story

At age 11 we are all supposed to be enjoying life. Every day should include going to school, hanging with friends, playing video games, etc. This was not the case for me. For me, age 11 included being diagnosed with a chronic illness that would impact my life in a variety of ways. My doctor told me I had Crohn’s disease. I knew something was wrong, but I had no idea exactly what it was. After my diagnosis, my parents sat down and tried to explain to me what was ahead, but the reality was that we had no clue about what the future was going to be like. People started to mention the word ostomy, but those are for older people right? You don’t get those when you’re young I thought.

After constantly going to the doctor, hospital stays, tests, procedures and more surgeries than most large families have in a lifetime, I decided to get an ostomy at age 28. This was an extremely scary time in my life because you don’t know what life will be like with an ostomy until you live with one. Ostomy surgery isn’t like getting a knee repaired—it’s a completely different lifestyle. This was even more difficult since for two years I had ZERO quality of life. I was going to the bathroom 20-30 times a day, in horrible pain, and weighed about 110 pounds. It was at this point when I knew the decision to get an ostomy was made for me by my Crohn’s disease. 

Since I was only 28, I had anxiety and enormous fears about how an ostomy would impact the rest of my life. Yes, I thought it would impact the activities I love and more (which it didn’t by the way) but also how would this impact my love life? A constant question in my head was, “What girl is going to want to be with someone who has an ostomy?” There were other questions too. “Don’t girls want to be with a healthy partner?” “Am I a real man if I am constantly sick?” “How will I ever sustain a healthy relationship if I can’t even be healthy?” And many, many more. 

Little did I know that it wouldn’t impact my romantic life much at all. So much so, that I started a relationship with a girl two days before my ostomy surgery. I told her what was ahead, and she was just happy I would be healthy enough for us to spend time together. 

Over time, I found I had a few options for how I could bring up my Crohn’s disease and ostomy while dating. One option was to not talk about it at all until it was necessary, but that didn’t work. Another option was to share everything and hope for empathy, but I didn’t think that would work either. The third option I came up with was to share everything but with confidence. Showing the girl sitting across from me that I got this, and we can even have fun with it. This was the option I typically went with. I was never closed off about it. Instead, I gave my dates three questions each date and nothing was off limits. The best question that I was asked was, “What would happen if you drink blue Gatorade?” I found discussing it in these ways showed that I had my disease was under control (even in a flare) and that I was open to talking about it, but also wanted to get back to living a normal life and going on normal dates. 

I can’t say that my Crohn’s or ostomy hasn’t impacted my romantic or intimate life. There was a huge learning curve to figure out what worked and what didn’t. It was a period of trial and error. If a girl asked me a question about how my disease or my ostomy might impact our intimacy, I was completely honest with them. But there are always work around. If you have an understanding partner, they will learn that you might have to interrupt a moment to go to the bathroom before it goes to another level. And if you have an ostomy, there are ways you can hide it during intimacy if you want to. Being intimate with Crohn’s or an ostomy isn’t always easy, but it’s definitely something you can make work. 

It’s important to find support when you are dealing with the wide variety of questions that come up when you live with Crohn’s disease, ulcerative colitis, and living with an ostomy. I personally have found some of the best support from three different areas. First, my friends. I’m open with my friends and they have helped me out a ton. One even gave me the best motto when I was about to get my ostomy, “Your Crohn’s and ostomy want keep you from meeting the right person. It will keep you from meeting the wrong person.” That is so true and so powerful. Second, the online IBD community is amazing. It’s great to have a 24/7 family you can always lean on. Plus, talking behind a screen to someone who I will probably never meet does make it easier at times. 

Lastly, Sarah, my wife! She is the most understanding person and supportive partner I have ever met. She has been with me from bedridden to full 140.6 IRONMAN®. She knows there will be ups and downs, the roller coaster ride will impact our sex life. The way we think about the actual intimate time, it’s about 1% (if that) of the actual time we spend together and our actual partnership. So we don’t stress about when my Crohn’s might impact that 1%; instead we concentrate on making the other 99% the best it can be. 

In the end, a lot of my fears never came true. A lot of the questions had simple answers. A lot of the stress I put myself through was replaced with just living a more normal life. I will always be honest with myself, other ostomates, or soon-to-be ostomates telling them that an ostomy is not a perfect system. BUT, it’s WAY better than the alternative. Especially when you see that many of the standard questions always have positive answers.