This post originally appeared on ImproveCareNow.
We have a problem. The problem is that most people seem to be focused on the what of our ostomies and not on the why. Having an ostomy can drastically improve someone’s health; it can even save lives. For many of us ostomates, getting one is not a choice we have the liberty to make.
Last year, I read a heartbreaking story about Seven Bridges who committed suicide allegedly due to bullying at school. He was 10 years old. According to the story on People, Seven was born with a medical defect that required him to undergo 26 surgeries which included a colostomy. Did anyone care about all he had been through?
Having an ostomy is not fun. No one wants to use a bag to collect waste outside of their body. Us ostomates have to spend extra time managing our ostomies; we have to put up with discrimination and the stigma, and all the while we have to cope with the reality that our insides are unable to function normally.
I’m lucky that my decision to get an ostomy wasn’t due to a life-threatening issue. In 2017, I got really sick. My colon was severely damaged and at one point I was actually told I needed to have an emergency total colectomy. Thankfully that did not happen. Yet, for three months I wasn’t allowed to eat since my colon was too damaged to process food. Instead, I had to live on TPN (IV nutrition) with a tube sticking out of my arm that delivered nutrients to my body. That’s how I survived for months.
During that time I became very depressed. I was a freshman in high school and all I wanted was to fit in. Not only did I have Crohn’s disease, but I’d also missed two weeks of school while in the hospital. I had an IV line sticking out of my arm and couldn't eat as I watched other kids have lunch around me. It got to a point where my quality of life was very low. I felt awful. Even worse, testing indicated that my colon was healing very slowly. At that point, getting an ostomy didn't really seem like a choice — it's what needed to happen.
I had ileostomy surgery in May of 2017 and very quickly I could tell the difference. Not only did I feel better physically but my self-esteem improved too. I got happier. I could eat and no longer felt like a social pariah. But adjusting to life with a bag was still hard. I had to take a month away from school and my friends to learn how to manage it. I also had a lot of problems with the pouching system, so I ended up having to use a transparent bag. Every single day, I have to live with the downsides of having an ostomy. But every day, I am blessed to live with the upsides.
As an experienced ostomate who still copes with the ongoing stigma, I feel compelled to share my opinion and advice...
Remember having an ostomy (or any medical condition, really) is something challenging that we have to live with daily and it’s not our fault. Having an ostomy is nothing short of an act of heroism. Please be mindful of what you say. What you think is funny may deeply hurt someone else who is already struggling. There have been times in public restrooms where a stranger commented about the smell that came out of my bag, even after I’ve sprayed air freshener, and it hurts. Waste smells and it’s not something I can control. But you can control what comes out of your mouth. Living with an ostomy and dealing with the stigma and discrimination surrounding it is a lot to bear. You can help make it easier. I’m not asking you to necessarily go out of your way for ostomates, but please be careful of what you say. A little thing can make or break anyone’s day.
It does get better, I promise. You’ll learn how to adapt to the awkward stoma noises and embarrassing bag leaks. It may seem impossible, but you’ll find products that are the right fit and you’ll learn to cut down on your bag change time. If you’re worried about people seeing your ostomy bag, buy a pouch cover. There are even ones with cool patterns and funny jokes! There are resources, advice, and tips in The Ostomy Toolkit on ImproveCareNow. Learn what you can from ostomates who have come before you. One thing I think is really important is to get comfortable with your ostomy. I find that embracing it feels a lot better than trying to pretend it isn’t there. Try naming your stoma, mine is called Ozzie! Whether or not you’ll be able to get it reversed one day, learn to love your ostomy. There will be days when you feel helpless and frustrated but I promise they’ll pass, even if it seems like they never will. Trust me, you are a lot stronger than you think. And, you don’t have to do it alone. Find other people with ostomies and support each other, it really does help. Right now there are experienced ostomates in the PAC — join us!
Lastly, I want you to remember that life with an ostomy does get easier over time. Don’t give up! Keep speaking up! If you’re struggling, ask for help. And if you see someone who is struggling, offer to help.
Article credit: ImproveCareNow