Posted by Becky Woolf on January 28, 2019
We have a problem. The problem is that 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.
I recently read the heartbreaking story about Seven Bridges, who committed suicide, allegedly due to bullying over his colostomy bag. He was 10 years old.
According to the story, Seven was born with a medical defect that required him to undergo 26 surgeries and when they failed, he needed to get a colostomy bag.
Having an ostomy is not fun. No one wants to have to use a bag to collect waste outside 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 intestines are unable to function like healthy peoples’.
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 for food. Instead, I had to have a TPN (Total Parenteral Nutrition) line - a tube sticking out of my arm that delivered nutrients to my body by formula. That’s how I survived for months.
During that time, I became very depressed. I was a freshman in high school - all I wanted was to fit in. Not only did I have Crohn’s disease (a chronic illness that so many people still consider a ‘bathroom disease’), but I’d also missed two weeks of school while I was in the hospital, I had an IV sticking out of my arm, and I could do nothing but watch as hundreds of kids ate 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 seemed like what needed to happen.
I had the surgery in May of 2017 and very quickly I could tell the difference. Not only did I feel better physically, my self-esteem improved. I got happier. I could eat and I no longer felt like a social pariah. But getting adjusted 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 my ostomy bag, so I ended up having to get a clear 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.
After reading Seven Bridges’ story, and as an experienced ostomate who still deals with the ongoing stigma, I feel compelled to share a few reminders and pieces of advice…
Ostomates
It does get better, I promise. You’ll learn how to adapt to the awkward noises and embarrassing leakages. It may seem impossible, but you’ll find the bag that fits for you and you’ll be able to cut down on your bag change time. If you’re worried about people seeing your bag, buy a bag cover! There are ones with cool patterns and funny jokes. There’s even more stories, advice, tips & tricks in The Ostomy Toolkit – learn what you can from ostomates who have come before you. One thing I think is really important: 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 and your ostomy 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!
Everyone
Remember having an ostomy (or any medical device, really) is something challenging that we have to live with and it’s not our fault. Having an ostomy is nothing short of an act of heroism. Be mindful of what you do and say. What you think is funny may deeply hurt someone else who is already struggling. I’ve had many times where a stranger has commented on the smell in the bathroom to a friend even after I’ve sprayed air freshener, and it hurts. Waste smells - it’s not something we can control. But you can control what comes out of your mouth. Living with an ostomy and having to deal with the stigma and discrimination around 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.
Lastly, I want you to remember that life with any illness 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.
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