“’She’s just a nervous child.’ The words still burn through my mind. I fully admit I was a nervous child. I bit my nails and even had a nervous leg twitch, but I had a lot going on as a 13-year-old about to start high school. I experienced all the normal emotions any soon to be high school freshman would feel – excitement, eagerness, and anxiety to name a few. But I was different. Instead of dreaming about prom, high school football games, and Friday nights with friends, my life was consumed with excruciating pain, diarrhea, and the toilet. I spent hours in the bathroom, I was losing weight at a rapid pace, exhausted all the time, and constantly felt pain radiating through my joints. But despite my symptoms, my diagnosis was ‘nervous child’ and my treatment? I was told I needed to de-stress.
I ended up being diagnosed with Crohn’s Disease, which has ultimately morphed into a diagnosis of ‘Indeterminate Crohn’s/ Colitis.’ I embarked on the long journey back to health, which involved sitting through 6-hour Remicade infusions, weekly Methotrexate shots I administered to myself, various infusion and oral medications, and even an EpiPen. This long, tiresome journey finally landed me into a temporary remission – I was symptom free.
For years I went through the motions of everyday life, fully aware my remission was coming to an end as my symptoms struck with a vengeful comeback. 10 years had passed, but I felt like the same scared little girl when I noticed the toilet was covered in blood. My symptoms forcefully pushed their way back into my life, but I somehow managed to dodge them on my wedding day. It was the glimmer of hope I needed, and I felt so excited to start a new life with my husband. We exchanged the traditional vows with an emphasis on ‘for better or for worse’ and ‘in sickness and in health.’ Little did we know we would be taking those words literal so soon after our wedding.
Six months after our wedding, at the age of 24, I was standing in the kitchen alone on a very hot June day. My phone rang, and assuming it was my husband coming home for lunch, I nonchalantly answered. But it wasn’t my husband – it was my doctor. He called to discuss the results of my recent colonoscopy, as I expected to hear the typical diagnosis of ‘active disease.’ Except, this time it was different. The words ‘high grade dysplasia’ and ‘cancer’ rolled off his tongue, and all I could do was freeze. I was in shock and hadn’t processed his words until I heard the ‘click’ of a hung-up phone. My body shook as I collapsed in the kitchen with tears streaming down my face. All I could think was ‘why me?’ Why was this happening to me?
A month later I was back at the hospital to discuss different options to tackle my precancerous colon. While I waited for my doctor, a physician in training walked in and sat down next to me. She introduced herself, and immediately cut straight to the point, stating ‘the best option for you would be a permanent ileostomy bag.’ To be honest, I didn’t really know what that meant. All I knew was the physician in training was suggesting living my best life meant pooping in a bag stuck to my stomach. How on earth would that make things better? My heart, my stomach, my face – everything shrunk deep inside of me. I was completely taken aback. The only thing I was sure of in that moment was I was determined I would not compromise my quality of life by living with a bag. Absolutely under no circumstances was I going to live with an ostomy bag.
The physician in training continued launching into my diagnosis and explained what living with an ostomy bag meant. By this time my surgeon had entered the room – finally, a breath of fresh air! I was convinced the physician in training had it all wrong and felt both relieved and hopeful my surgeon would straighten everything out. But to my dismay, that wasn’t the case. My surgeon began throwing around the phrase ‘Total Proctocolectomy with a Permanent Ostomy’ – that was the technical term for my surgery, if I chose to go through with it. My surgeon explained that they would ‘remove my colon and rectum and pull the end of my small intestines through a tiny hole in my skin which would serve as my stoma. An ostomy bag would attach around my stoma, and any time I had a bowel movement it would run through my stoma and empty into an ostomy bag.’ I appreciated the explanation, but I didn’t understand how it was supposed to make living with an ostomy sound appealing. If anything, it made me more firm in my decision to avoid a bag at all costs.
But when my surgeon continued to run through my options, my only other choice was to have a portion of my colon removed, which meant I would have to endure routine colonoscopy ‘cancer checks’ every three months to ensure there was no sign of disease. This sounded okay to me at first, but then my surgeon made the most profound remark that has completely changed my life. He looked at me and said ‘You never know when Cancer will strike. It could be today, tomorrow, or it could be when you are a 30-year-old, young mother with children.’ That very moment was when it all changed for me. Having a family is one of the most important dreams of my life, and something my husband and I both want so badly. The thought of being a young mom and potentially not being there for my children shattered me. While we didn’t have any children at the time, it made me realize this decision was going to impact and follow me for the rest of my life. That was the moment I knew I was going to live the rest of my life with a permanent ileostomy.
I wasn’t completely convinced with my decision. I felt like I didn’t really have any other choice but to opt for an ostomy bag. As soon as I got home, I began to scour the internet, looking for any type of blog, website, or article I could find about living with an ostomy. While I was shocked to find so much information, I was even more surprised to learn that a lot of these people weren’t elderly like common misconceptions of ostomies would suggest. These people were my age, and they were learning to adapt, live, and love life with a bag – and I wanted to be just like them. If they found happiness, I know I could too. That is when I decided to completely change my mindset, go all in with the surgery, and change my life forever. I was going to live with a permanent ileostomy, and I was going to be proud of it.
It’s funny how things and people change over time. I was so against the idea of life with an ostomy and fell victim to all the misconceptions – I was misinformed. But the moment I decided to adopt a positive outlook on my situation, my life changed forever.
I learned to love myself, my new body, and to not worry about what others think. I began to value myself, my life, and learned what it meant to feel confident.
I have lived with my ostomy over two years and I can honestly say I couldn’t imagine my life without it. I’m no longer in pain, I’m not stuck on the couch, and I don’t spend my days on the toilet. My ostomy bag has changed my appearance on the outside, but its also completely changed who I am. It has allowed me to reevaluate what’s important in life, it has given me a voice and passion for advocacy and the power to help others in my situation, and has encouraged me to grow as a person. My ostomy has given me strength and health, but most importantly, it has given me a second chance at the life I never knew I was missing.”
This story was submitted to Love What Matters by Eleanor Meghan Cary Brown. Be sure to subscribe to our free email newsletter for our best stories.
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