Living My Best Ostomate Life

by Liz HilesSurvivor, Bladder CancerSeptember 16, 2021View more posts from Liz Hiles

These days when someone gives the advice to “live your best life,” many might associate the phrase with celebrity journalist and talk show host, Oprah Winfrey, who began using it regularly on her show and in O Magazine beginning in 1998.

I don’t blame them. I mean, it’s Oprah! Who doesn’t love Oprah?!

However, there is so much more to this phrase than Oprah – no disrespect intended towards Oprah!

I learned at a young age to follow my passions. I studied sociology, women’s studies and cross-cultural competencies. My main goal has always been to help and support others and make an impact on the world around me. Enter stage left: 2016.

That August I was hit by a Mack truck in the form of a bladder cancer diagnosis. Life changed in an instant.

The next eight months were filled with treatment. A radical cystectomy with radical hysterectomy, removal of pelvic lymph nodes and a stoma placement for my urostomy. I was going to be living with a medical appliance attached to my abdomen for the rest of my life.

It is tough to plan for the future when you can’t even plan for the next five minutes as you wade through the nausea and vomiting. Fatigue. Neuropathy. Hair and hearing loss. Tinnitus. You know, all the insane side effects that are nearly as much of a pain in the ass as the cancer itself.

Learning to live with an ostomy was a curveball with a learning curve. I was ahead of the curve going into it as many people who end up requiring an ostomy due to a cancer diagnosis have never heard the word OSTOMY before. I had. In fact, due to the job I had at the time, I had been advocating for the patients and families of the doctors I worked for regarding getting the ostomy supplies they needed. Learning to live with my own stoma, was a different story though.

Learning to properly apply a medical appliance every 3-5 days while that same part of the body was healing from a massive abdominal procedure was not easy. There are leaks and mishaps. There are moments of success and pride as well as moments of failure and defeat when you’re first adapting to life as an ostomate. Eventually, you do get the hang of things and get over the mishaps much more quickly.

The biggest thing that was a testament to how far I had come was in August 2019, three years after my diagnosis, when I took two weeks off work and took my first major trip since being diagnosed. I was taking a plane, train and car…literally!

On the first leg of my trip, I hopped on a plane and flew by myself from Cincinnati, OH to Philadelphia, PA. I had received a scholarship to attend my first United Ostomy Associations of America (UOAA) national conference. I was nervous about having to deal with TSA as I’ve heard absolute horror stories from some ostomates in groups about their experiences. I followed a lot of the tips I had previously heard. I emptied my ostomy before going through security and before boarding and I carried my UOAA TSA Travel Communication card with me. I, fortunately, had zero issues and arrived in Philly with no ostomy mishaps.

When I arrived in Philly, I took a shared ride in a Lyft with an amazing, friendly driver. The topic came up of what brought us to Philly, which in turn led to a conversation about my diagnosis. The driver was not familiar with ostomies, so I had to explain what they are. The driver’s questions were appropriate and not at all intrusive. By the time he dropped me at my hotel, he wished me luck and asked if he could give me a hug. I consented. He shared that he could not begin to imagine what I’d gone through, but he was impressed with my outlook on life and that I had traveled on my own so far for a conference. I thanked him for his kindness and off he went. I made sure to give him a great tip and review later!

At the conference, I took part in a lot. I was on a panel regarding advocacy, attended lots of presentations, ate a ton of amazing food (Philly cheesesteaks will never be the same!) and made a ton of friends. I even dressed up as my superhero alter ego, The Social Butterfly. At times, I had to stop and remind myself of everything I had been through less than two years prior as I was thoroughly exhausted at the end of each day to the point that I missed out on some of the evening activities and hanging in the lobby with the folks my age late into the night. Still, I did it…and had a ton of fun.

Once the conference was over, I took the train – for the first time EVER – through Grand Central Station, transferring to another train and continuing my trip. I got off the train in Utica, where a close family friend picked me up to take me to Eagle Bay, NY. Eagle Bay is a peaceful, Adirondack Mountains town. A typical tourist and summer-resident town. I stayed a week with her there, walking, hiking in the woods, swimming in the lake and doing tourist activities in a place I had heard about for 30 years, but was experiencing in person for the very first time.

At the end of the week, we drove back to Cincinnati. It was an amazing two weeks. I was thoroughly exhausted. Still, I did it all and loved it! It was the first time that I remember truly living my best life since my diagnosis… Completely.

So often providers and young adults do not move forward with having an ostomy or other fecal or urinary diversion as a treatment option. I don’t know if it’s fear of the unknown or misconceptions of having an ostomy. Some people are concerned that quality of life will be an issue with a diversion. There are very few circumstances in which your quality of life will be worse with an ostomy.

My quality of life dramatically improved with an ostomy. In fact, I’ve been able to continue striving to live my best life because I have an ostomy. In addition to being able to, you know, LIVE, I have continued to reintroduce the physical activities that I did prior to cancer back into my life – it’s a slow process, but I’m going to get there – and I have made the transition from working in a position that I was becoming increasingly dissatisfied with to working for myself from home.

I am now doing freelance writing, advocacy and other projects. Since I have made this transition, I’m less stressed, happier and better able to care for myself on a number of levels. This leaves me with more time and energy to do the things I really want to do. Financially, I’m not quite where I was or where I want to be yet, but I’m slowly building it up.

The key thing is that ostomies do not slow your life down – cancer does! With a little extra planning for supplies and safety measures, you can do anything you want with an ostomy that you wanted to do without an ostomy. You can skydive, mountain climb, travel, dance burlesque, wear bikinis, go shirtless, and, if you so choose, yes, even have kids! (That’s not my jam, but if it’s yours – pursue it!). The only obstacle you have living with an ostomy is the one inside your own head!

Don’t let the fear of living life with a medical appliance stop you from living your best life. I haven’t, neither should you!

Don’t worry about what others will think about you or your ostomy. The only thing that matters is what you think. Live your own best life – whatever that looks like for you. I mean, we all can’t be Oprah anyhow!

If any of our readers are facing the possibility of an ostomy and you’d like to talk about it, you can reach out to me directly, or you can go to https://ostomy.org for more information or to find an affiliated ostomy support group (ASG) near you. The UOAA will be having its next national conference in Houston in August 2022. Anyone who is interested in learning more about ostomies is welcome to attend.

Click here to register for A Community Conversation: Ostomies and Cancer on October 5th at 7:30 EST!

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