EMC Brown is an ostomate from Virginia who currently lives in Colorado Springs, Colorado. She is working towards her Master of Education in School Counseling and is passionate about spreading ostomy and IBD awareness and promoting body positivity. EMC and her husband, Tom, have a zoo of fur babies at their house - a rescued greyhound and three rescued cats. They love the outdoors, and you can catch them hiking or going on excursions on the weekends! Here is EMC talking about her experience in her own words:
Ten years – that’s how long I managed to live with a diagnosis of indeterminate Crohn’s Disease until the unthinkable happened. And to be honest? Its something that has changed my life forever.
I was diagnosed with Crohn’s Disease at the innocently young age of 14. I was a freshman in high school, hoping, wishing, and wanting to do all the typical high school things. But, instead of participating in spirit week and going to my first high school dance, I was at the hospital with an IV stuck in my arm receiving Remicade infusions. After two or three sticks with the IV needle, the nurses would finally decide to try a baby IV on my nonexistent veins. I was dehydrated, couldn’t eat, rapidly losing weight, and withering away. I was lifeless, and I was scared.
Fast-forward a few years, and I had managed to go into remission with nothing but natural supplements. Homeopathic medicine allowed me to live 5 whopping years without any harsh medications. I was living, but I wasn’t truly alive. I went through the everyday motions of constant diarrhea and stomach pain, as well as serious anxiety about having an accident in public. I had become so accustomed to this, it quickly became a part of my everyday life. It wasn’t okay, but it was my normal, and I learned how to live with it. Looking back on it now, I can honestly say that I forgot what it meant to “feel good.” Diarrhea, excruciating stomach pain, blood in the toilet – I thought that was normal.
In college, I met the love of my life, Tom. My symptoms were beginning to reemerge, and Tom never got to see me at my “best” – but he still loved me. He dealt with my symptoms and quickly adapted to my ill lifestyle. He didn’t mind if we spent the day on the couch, or if our date consisted of Entyvio infusions at the hospital, he just wanted to be with me no matter what. That’s when I learned what love is.
A couple short years later, Tom and I got married! While my symptoms were at their all-time high, somehow everything seemed to subside on the day of our wedding. I was able to live in the moment for the first time in years and fill the day with only happy memories. I don’t know how I got so lucky, but I will always remember my December wedding by the memories of love, 75-degree sunshine, and finally feeling well.
But just as we began the adventure of married life, little did we know that we would so abruptly have to take our vows of dealing with trials and tribulations literally so soon. Six months after our wedding, I was home alone and received a phone call that no one should ever have to pick up. It was my GI doctor with the results of my most recent colonoscopy. I was used to hearing that I had polyps, active disease, and scarring. But never did I think I would hear that my colon had reached the early stages of cancer. I was speechless, but somehow managed to hold it together on the phone with my doctor. But as soon as I heard the phone click on the end of the line, my legs gave out as I collapsed to the floor, devastated in tears. All I could say over and over again to myself was “I don’t want to die.”
Everything happened incredibly fast. A week later, I was back at the doctor to discuss the options to tackle my colon. That’s when the surgeon came in with his no-nonsense attitude and spilled that a permanent ileostomy would be my best option. I was not prepared for that! I had been living with IBD for 10 years, but despite that the idea of an ostomy bag was never an option. There was absolutely no way that I was going to live the rest of my life with a “poop bag” stuck to my belly. How could that possibly enhance my quality of life?! I was only 24 years old – there was zero chance that would be happening.
I left the hospital with a lot to mull over. It seemed like I would either have to live with a permanent ileostomy, or have a partial section of my colon removed, and go in for routine cancer checks every few months. But, the more I thought about it, something strange began to happen. I only had a couple weeks to make a final decision, but for some reason the permanent ileostomy was starting to look more and more appealing. I began searching all over the internet for different blogs about young people living with ostomy bags. The more I read, the more accepting I became, as Tom reassured me that he supported whatever decision I made, even if that meant a permanent ileostomy.
Its hard to think about making a life changing decision only at the ripe age of 24. But with a lot of bravery, and one giant leap of faith, I decided to have the surgery to remove my colon and rectum – I chose to live with a permanent ileostomy. As soon as I made the decision, everything felt right. I felt hopeful and even excited about the possibility of a “new life,” and despite all the dark, negative feelings I had been experiencing, I made up my mind that I was going to be positive and embrace life with an ostomy. I didn’t know it at the time, but my positivity quickly served as my most effective coping mechanism.
It’s hard not to reminisce or get emotional when thinking about all of the speed bumps I’ve hit in the road of my short 26-year-old life. But when I look back on it now, I know I made the right decision. I’ve finally learned what it means to “feel good” again, and I’ve learned to once again live in the moment. Going through something life altering changes you forever. It makes you realize just how precious life is and encourages you to take the bull by the horns and live the life YOU want to live. For me, that means living limitlessly, living happily, and living life to the fullest. It means living to spread awareness and share my story with others to show that yes, you can live the life you want, even with an ostomy.
1) Q: What are your favorite activities and hobbies?
A: I love to stay busy, and it seems like I always have some sort of project that I am working on! I love to craft as well as bake, and I really enjoy writing. After having surgery, I started an Instagram account ( @emc_brown ) to spread awareness, encourage acceptance, and promote education about IBD, ostomies, and body positivity. Connecting with other souls in these communities has quickly become one of my favorite activities! I have met so many beautiful people who have endured/are enduring the same things I went through, and it has been incredibly rewarding to support each other and form such positive relationships. I also really enjoy traveling, and my husband and I love hiking and camping. I have wanted to try rock climbing and mountain biking, maybe sometime in the near future!
2) Q: What is your biggest inspiration?
A: My biggest inspiration has been the incredible community of people I have met through advocating on my online platform @emc_brown. I had no idea how many other individuals were going through what I went through, and I certainly had no idea there were so many people out there living with ostomy bags! It has been so rewarding and enriching to swap stories with others in the online community, and to serve as a giant support system for one another. It’s a pretty special thing to belong to a community where there is nothing but love and support for each other, and it is utterly inspiring to see the resiliency in these warriors. They encourage and inspire me to continue sharing my story, because it has not only healed them, but also me.
3) Q: Who is the person (or people) who has gotten you through the most?
A: I talk a lot about my husband Tom in my post. Tom has been nothing sort of amazing through everything that we have endured – even early on as a young couple! Tom has never been “scared away” by my illness or even now by my ostomy bag. He has always been there, whether it be taking care of me in the hospital, driving 5 hours to go with me to a doctor’s appointment before we got married, or even just making dinner because I felt “too sick,” he was always there. This December we will be celebrating three years of marriage, and its crazy for me to think back of everything we went through in our first year of marriage. But, it was all the hardships that made our bond stronger and allowed us to grow even closer.
My mom and dad are the two people that I attribute so much to. I can remember when I was first diagnosed with indeterminate Crohn’s Disease, my dad was at every single appointment, and saved every single piece of paperwork we received. He stayed up late at night researching and compiling notebooks with all my health information, every medication I had taken, and every lab test that had been done – I still have the notebooks! One instance I can clearly remember was when he found me on the bathroom floor, sick and dehydrated. He literally carried me to the hospital.
My mom is one of those beautiful souls who just radiates. Her happiness, optimism, and positivity are what gave me the courage to undergo surgery for a permanent ileostomy. She slept in the hospital with me and Tom for a week after my surgery, and even bathed me. The surgery had wiped my energy levels to the point where I couldn’t even brush my hair! My mom was there to care for me, brush my hair, ensure that I had plenty of ostomy supplies, and fill me with the love and motivation that I needed. There is no way that I can ever thank them enough.
4) Q: While you have been going through this time in your life, what has been the most unexpected and rewarding thing you have experienced?
A: The most unexpected and rewarding thing that I have experienced is the confidence and outlook I have gained. Going through a life altering experience such as this really makes you reevaluate your life. My experiences have made me prioritize things differently, and embrace the person that I am. Growing up, I was shy, uncertain, self-conscious, and scared. I was worried about making a mistake and I wanted to please others. After having surgery and playing with the threat of cancer, that has all gone away. Now I am confident, outgoing, driven, and living the life that I want to live. I am so much happier, and not concerned about pleasing others rather than living for myself. I have learned to march to the beat of my own drum and take risks! I have opened up, been vulnerable in front of others, and decided to live for today rather than tomorrow.