This post was originally published on Inflamed and Untamed.
Did you click to read this post because I’m in my underwear?
I did that on purpose. I did it because most people want to look away when they hear about ostomies. Ostomies make people uncomfortable. In order to help you not feel bad, let me tell you what I used to think about ostomies: I thought they were gross. I thought anyone who had one probably smelled bad and was dirty and their body would look disgusting. I thought I’d rather die than have an ostomy… until I needed one myself.
I was still in college when I found out I had to have my entire large intestine and rectum removed or I would die. I have Crohn’s disease, and I’d gone to the emergency department because I hadn’t been doing well and needed immediate medical attention. I didn’t go in expecting they would tell me I needed surgery, but after being admitted, that’s what happened a few days later. It all happened so fast that I didn’t have much time to process what was happening to me. One thing I did focus on was that I would wake up with a part of my small intestine sticking out of my stomach and would need to wear a bag taped around it so that it could collect my stool in it.
I was going to be pooping in a bag.
There are different kinds of ostomies. Most people get confused and call all of them “colostomies” because that’s the kind they’re familiar with. I had an ileostomy, which meant my ileum (the last portion of the small intestine) was sticking out of a surgically created opening in my abdomen. The part of the intestine you can see sticking out of your body is called a stoma. Because people with ostomies can’t control the things moving through their digestive system, they become incontinent and need to wear a bag around the stoma to collect their waste.
I had a bag of sh*t on my tummy…
Having that operation wrecked me mentally. I didn’t even look at my ostomy until a nurse forced me to when it was time for me to learn how to change the bag.
I hated this life. I thought, Why me? I don’t know what I did wrong to deserve this.
I quickly became depressed. I felt ugly, disfigured and like no one would love me like this. My thoughts became so irrational I convinced myself that all my friends would hate me, that I was going to be alone forever and that I would never be a valued and loved person. My self-esteem went lower and lower until there was nowhere to go. I hated myself.
I was in a relationship at the time, but it was a relationship that wasn’t good for me and had been making me unhappy for a long time. Instead of leaving like I knew I should, I worked hard to keep the relationship because I figured no one else would ever want to be with me now that I had a body like this. I let someone treat me terribly just because I thought this was all there was for a sick, disfigured, ugly, smelly girl with a secret under her shirt. When it came to having sex, I was terribly anxious. I couldn’t focus on anything else but the bag, and I cringed and recoiled at the feeling of touch on my body.
I felt bad about myself because the world taught me to.
World Ostomy Day is a day to raise awareness about people living with ostomies. I’m writing this story because World Ostomy Day exists. It exists because it needs to, because people feel how I used to feel about ostomies.
Gross. Dirty. Ugly. Smelly. Disgusting.
Those are some of the misconceptions people have about ostomies. People want to look away and act like they don’t exist, which makes a person who has an ostomy feel like they’re less of a person just because they needed this life-saving surgery.
My ostomy was only temporary, so I no longer have it; I currently live with a J-pouch. I did adjust to managing the ostomy pretty quickly, but I never did learn to accept it. It breaks my heart knowing others might feel as bad about themselves as I did when I had my ostomy. I bet if we lived in a world where ostomies didn’t come with such a negative stigma, fewer people would feel that way.
My name is Sara, and I’m not less of a person because I have Crohn’s disease. I’m not ugly now, and I wasn’t ugly when I had my ostomy. Every single thing about me now is exactly the same as it was back then except where my body empties its waste.
I have many friends who have Crohn’s disease or ulcerative colitis that have ostomies and do great work to raise awareness. They have to take pictures in their underwear, flexing their muscles under bright lights or doing amazing things to get people to look and then read what they have to say. Taking those pictures is a way of showing others with ostomies that they can still feel good about themselves and live a full life, but in another way it’s clickbait to try and get people to actually read and understand. The only time positive media about ostomies goes viral is when someone posts a picture like that.
The truth about pooping in a bag?
Well, it’s a weird thing not to use your butt to go to the bathroom. It’s something I never really thought about because that’s the way it had always been. When I had my surgery and poop was just filling my bag, I sort of missed going to the bathroom how I used to, as weird as that sounds. It’s weird not to feel the urge to go to the bathroom anymore.
The truth is, having ostomy surgery is a learning process, and acceptance takes time and practice. You wouldn’t believe how many different types of bags, powders, adhesives and other supplies exist. Figuring out how to dress yourself, what to eat and what products you like takes time.
The truth about pooping in a bag is that it can save lives. The truth is that people with ostomies don’t smell any worse than people without. The truth is that ostomies are not just for elderly people but people of all ages. The truth is you can do all sorts of things with an ostomy like go swimming, participate in sports and fitness and lead a really fun and active life.
People who have ostomies all had serious medical conditions or injuries they didn’t choose, and surgery became an option for a better life, or in some cases to save a life. Remember that. Don’t judge people who have had to go through so much and are dealing with it because they have to.