I remember the exact moment my body started rejecting food and pain took over.
It was my freshman year in college and I was in my dorm room eating with a friend when excruciating pain hit my stomach after every bite. I couldn’t finish the food or our conversation even. All I could do was lay on my bed. Little did I know, from that day forward, my life would be completely changed.
Two years, a lot of tests, weight loss, X-rays, and tears later, I was diagnosed with Crohn’s disease. A disease of inflammation that can affect any area of the digestive tract but most commonly affects the small intestine. It’s chronic and can be debilitating. I was relieved to finally have a diagnosis at the time but had no idea what this disease would entail other than stomach pain. From that year on, my symptoms ranged from mild to severe to emergency lifesaving surgeries, with one of those surgeries being ostomy surgery.
What is an ostomy, you ask?
Well, I have a hole in my stomach where a piece of my intestine, called a stoma, is on the outside of my body. I wear a bag over the stoma and the bag collects waste. So, at 34 years old, I came home from the hospital with an ostomy bag – a medical appliance most people think is only reserved for seniors.
Life is Different
These last two and a half years, I’ve been learning what it means to live my life with an ostomy. It changed me. It changed my day to day and how I approach all aspects of my life, including dating. I have these questions floating around in my mind that won’t have answers until I actually go through the experience.
Questions like: when is the right time to tell a potential love interest about my medical appliance? What will sex be like? Will it make noise during the act? When will I feel comfortable enough to walk around him without clothes on? Is an ostomy a deal breaker? Most people would say if someone doesn’t accept you as you are, then you don’t need them anyway.
Cut your losses, forget him, and don’t look back.
While I do agree with that, I ask myself is it really that simple? I try to put myself on the other side of it: would my decision to see someone again be skewed if on a first date he revealed a chronic diagnosis or serious health issue?
Through the years, it has gotten easier to tell a potential partner that I have Crohn’s disease. The word “disease” used to feel extremely heavy but I’ve experienced so much and continue to learn so much about Crohn’s that, at this point, I have no issue discussing what it is and my experiences with it. It’s the ostomy part that’s still fairly new and will take a little time and practice to confidently reveal to romantic prospects. Unless he has some kinky fetish, bowel function is certainly not the sexiest topic of conversation and revealing a diagnosis and medical devices isn’t exactly first date conversation…or is it?
If I go out with someone and don’t see a possibility of a relationship, it’s easy enough to not speak on it. If I do like him and want to continue seeing him, until I actually say it aloud, I feel like I’m carrying a secret. From there, I start to behave like anyone with the burden of a secret and focus periodically shifts on what’s not being said rather than the conversation.
First Date Do or Don’t
I’ve become friends with two women, also with ostomies, also in their 30’s, and the dating topic always come up. Okay, okay, mostly I bring it up (I’m still new to this). One of the ladies told me she is straight and direct right from the beginning and lets a potential know exactly what she’s working with, “I have a bag also known as a sh*t bag.” Yes, this is exactly what she told me, she’s from Brooklyn.
My other friend has been in a long-term relationship with a man she was friends with prior to her surgery so he knew her story before they took it to the next level. She even gave me suggestions on accommodating lingerie (which I’m looking forward to trying out one day). And one woman in a support group meeting I attended said she opted not to say anything with a couple of people until the clothes were actually about to come off and brushed it off as an, “Oh that’s just my ostomy bag.” No big deal. These guys were there to serve a purpose for one night only so the details weren’t necessary.
For me, I know I’ll have to feel it out and see when that comfort level is reached. I have been on a few dates since having an ostomy and it came up on one of them when the conversation went to Crohn’s. To my complete surprise, he asked if I had a bag. We had a good time that evening but I didn’t end up seeing him again. Was that the reason?
I will never know. What I do know is that meeting someone and reaching a certain level of care and commitment in a relationship is challenging in a different way for people living with a chronic diagnosis than it is for healthier people.
Having a chronic illness like Crohn’s is an ongoing learning process of balancing unpredictable symptoms with self-care and productivity. For me, it’s still finding the positive in days my functioning levels don’t match up with my expectations. It’s trying to reconcile a complicated and exhausting relationship with food and pain. It’s discovering sources of healing and solace. It’s finding the right course of treatment through trial and error. It’s having hope the medication will work and its benefit will outweigh the possible, awful side effects.
My body changes as my weight fluctuates. My skin gets dry from dehydration. Lack of nutrients from malnutrition causes brain fog and chronic fatigue. I have trouble standing for long periods of time. I have visible scars from surgeries and procedures, along with invisible ones that make it difficult not to lament on the body I had before a bag was attached to it. An entire year before ostomy surgery I barely left the house or got off the couch.
Prescriptions weren’t working and my intestines became so ulcerated and inflamed that it was either live with a bag, or continue living with a deteriorating colon that was rapidly leading me to an early grave. I chose the former and I try to never take for granted the physical freedoms an ostomy has allowed me to have again. It’s not perfect and I would have never guessed this is where life would lead, but I’m glad to be alive to even say that.
I have a deep appreciation for being able to move around freely and date more. I look forward to getting excited about someone in a way I haven’t been in a long time and to be stimulated by eye candy and engaging conversation. It’s been too long since I’ve experienced those fun, googly eyed getting to know you stages with a special person that keeps me smiling at my phone throughout the day, and it’s been even longer since great sex but that’s another topic.
I’m actually planning to meet up for the first time with a guy I’ve been chatting with. He’s a professor and a writer and offered his hand in taking a look at my writing. Ha, I should have shown him this, but regardless of who comes into my life and when, I will continue to work on my relationship with myself and this new appliance.
Here are some mantras I will live by as I navigate through these new dating waters:
Transparency is freeing.
Being honest about my health struggles and communicating them in a clear way will allow me to identify and express my needs in a relationship while subsequently lifting some of the burden caused by an invisible illness. Communication will ultimately lead to a healthier relationship with the right person.
I am not unlovable because of my disability.
There are countless attributes that make up each unique human being and I will give people the chance to get to know all parts of me. Having a disability is only a part my story.
What I believe, I will project.
If I live in a resentful place of the struggles my body has experienced and could potentially experience again, I will be anxious and unhealthy. Negative thoughts will become damaging insecurity so I’m choosing love and gratitude for a body and mind that has persevered through a lot of pain followed by a lot of recovery.
Che is a native New Yorker with a degree in Africana Studies and a love for comfort, food, and adventure. She finds travel, culture, language, and people fascinating and likes to believe she was an anthropologist in another life.