There Is Life with an Ostomy
Content warning: The following article mentions details surrounding the author’s experiences with pain, PTSD, and suicidal ideation. If you or someone you know is struggling, please know that there are many resources available for support including the National Suicide Prevention Lifeline (1-800-273-8255) and online chat.
Let’s rewind to October 2019. I was laying in a hospital bed yet again (my third re-admit). I was either writhing in pain or on such a high dose of Dilaudid that I was asking my mom why there were cats walking around the room. I had by this point spent more time at the hospital than in my own house. My white blood cell count was somewhere around 47000; my lymph nodes were swollen and crushing my sciatic nerve. I was losing weight (read: almost put on a nasogastric tube). My ostomy was a point of disgust that often overrode the thoughts of dying from my cancer. My world was crumbling. I looked at my mom and begged her to let me just stop all of this. Stop the needles, stop the burning antibiotics, stop the living in a hospital room, stop the pain, stop it all.
I was in a dark place
I had found a strange place of acceptance and readiness to just die.
It is so hard to type that out. To know I wanted to die. I’ve never in my life thought that before. I had never contemplated no fighting tooth and nail to survive and thrive. Sleep deprivation, pain, and PTSD will really make you go to dark places.
So, when I read articles like one recently where a man fought for his right to die instead of having an ostomy, my heart absolutely breaks for the person involved.
I WAS THERE! I felt everything this man is feeling, I experienced everything he is experiencing. I am so grateful that there was the tiniest seed of hope inside me that pulled me through.
I wish I had found someone to talk to sooner
It is stories like his that make me share mine over and over and OVER again. If I had known just one person living with an ostomy that I could talk to, I may have found my path to acceptance so much sooner. If I had known that I would be standing here living my life to the fullest and more open than ever before, the pain, the fear, and the uncertainty would have been so much easier to push through.
We need more ostomy education
An ostomy is not a death sentence. An ostomy is a chance to continue living. If I had not removed my diseased organs and had an ostomy placed, I would have most certainly died. I specifically chose an ostomy over other diversion options because I wanted to be up on my feet with as few complications and as soon as possible. A young woman with the option of not having a bag on her stomach may seem crazy for choosing the bag, but I wanted my best chance at returning to normal.
Eliminating the taboo around ostomies
I want more people to be knowledgeable about ostomies. Why is it I didn’t know what a urostomy was until I needed one? Why do individuals feel ashamed of their ostomies? Why do strangers feel the need to mock ostomies? Ostomies are not gross; bodily functions are not gross. You wouldn’t tell a woman she is disgusting because she has a period, so you won’t tell me I’m gross for peeing in a bag. I believe it is only by us ostomates living our lives openly will we be able to educate and eliminate that taboo that surrounds ostomies.
Finding peace and acceptance
So let’s fast forward from my time being angry at my ostomy to now. Let’s talk about how I made peace and found happiness in my situation. Today, I don’t give more than two seconds' thought about my ostomy and that is only when I need to scoot to the bathroom to empty. That’s it. That is the only time I think about my ostomy. I don’t think about my ostomy when I’m working out. I don’t think about it during intimate times; I don’t even really think much about it when I’m doing my bag change. Living with and caring for your ostomy over time becomes so routine that it fades into the background.
I have more to focus on than my ostomy
These days, I spend more time looking for the cute summer clothes I couldn’t shop for last year when I was sick. I’m packing up my rental to move into our new home! It has been more time-consuming picking out patio furniture than making sure people can’t see the bump of a full bag under my dress. My ostomy is just part of me.
Today I love telling my story, connecting with fellow ostomates and bladder cancer warriors. I feel beautiful with my ostomy not despite it. I am enjoying not being in pain and not being tied to the bathroom. Today I find joy in rediscovering so many things I could do before when I was sick. Today I am kicking cancer’s a$$, and I’m damn proud of it.
My top 3 tips for coping
So if you are facing surgery to have an ostomy placed or have one and are struggling to find the light at the end of the tunnel I have some tips.
1. Find a source of support
I have received life-changing support from two places.
One is an Instagram account called @thecancerpatient which is composed of Adults and Young Adults who battle all types and stages of cancer. The deep discussions range from sexuality, mortality, and a common hatred of coloring books. If you want to laugh, cry, and read stories from real people, I highly recommend following this page. For more education and medical support, I often look to websites like this one, BladderCancer.net, or bcan.org, and ostomy.org.
2. Find people like you
Find people on Instagram, Facebook, and Twitter who are living with an ostomy. I admit, I haven’t found any social media accounts of someone with a urostomy, but colostomies and ileostomies come with 99% of the same concerns, issues, and roadblocks that a urostomy does. By following people living with ostomies, my eyes were open to how “normal” life can be with a bag.
3. Make your ostomy fit your life! Your life doesn’t need to revolve around your ostomy
Find ways to “hack” your ostomy to suit your life. I have found ways that make my bag look smooth under any outfit I want to wear, and if it shows? Oh well. I made a sleep routine that makes me more comfortable. I have reminders on my smartwatch to keep me on track with emptying my bag when I’m busy. I’ve purchased intimacy-wear to keep my bag contained when I need it to be. I keep extra supplies on hand when I’m away from home. I have routines and systems in place that let me live my life while my ostomy is just a side note. Rather than saying “no" to something because of my ostomy, I find ways to say “yes!”. It may take a little creativity, but I’ve yet to hit any roadblocks of something I absolutely can not do because of my ostomy.
Living a full life with my ostomy
This is really just to say one thing. Your life will not end with an ostomy.
Repeat that. YOUR LIFE WILL NOT END WITH AN OSTOMY. It breaks my heart to read stories like this one coming out of the UK, or to read comments from women absolutely disgusted and against their doctors recommending an ostomy. This may be the first time I’ve heard it in the news, but sadly I have read comments more than once of someone who would “rather die than get a urostomy”. I hope by telling my story, people will see a snapshot of how full life can be with an ostomy. I want to use my story to educate and help someone else find the happiness I have.
Have you tried medical nutrition therapy?