‘I’d rather die than have a poop bag attached to me.’ My boyfriend didn’t sign up for a sick girl.’: Woman with ulcerative colitis learns to ‘love herself’ despite invisible illness

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“When I think back to my life in 2010, I picture a young woman who just graduated high school with honors, heading into her first year of college. During my freshman year I worked hard, made a ton of friends, made the Dean’s List, and became a collegiate cheerleader. Like most 18-year-olds, I felt invincible. Then, all of a sudden, I got sick.

I started having stomach pains, fatigue, and blood in my stool. Due to the frequent trips to the toilet, I stopped absorbing nutrients and lost 25 pounds within 3 months. I became a shell of the girl I once was and I had no idea what was wrong with me. At family dinners I heard the whispers, ‘Wow, she looks awful, I think she has an eating disorder.’

Courtesy of Jessica Mazelis

My doctor told me how common it is for new college students to experience stress and my symptoms were brushed off as depression and anxiety. At first, I accepted the diagnosis, but my symptoms continued to worsen. I could sense the frustration in my doctor’s voice every time I came to her with new symptoms.

‘Try these anti-depressants and come back to me in a few weeks, she would say. But I wasn’t depressed, and I wasn’t anxious. I was frustrated and angry because everyone kept making me feel like it was all in my head. After 8 months, my persistence paid off and I was referred to a gastroenterologist for a colonoscopy. When I woke up from my colonoscopy, my G.I. told me I had an autoimmune disease called ulcerative colitis. I was so relieved to finally have some answers and I remember my first question being, ‘Great, how do we get rid of it?’ The look on my doctor’s face immediately made my stomach drop. He told me, ‘Ulcerative colitis has no known cause or cure and our focus will be to give you the best quality of life possible.’

Courtesy of Jessica Mazelis

I remember thinking he was somehow mistaken. How can an 18-year-old, athletic, smart, strong young woman who has the entire world ahead of her have an incurable chronic illness? There had to be a cure. Unfortunately, I was wrong, and my life quickly became consumed by my disease. Everything I ate caused intense pain and had me running to the toilet. I was barely able to get through the day without passing out from anemia and chronic fatigue. On the outside, I looked totally normal but on the inside, my body was fighting a war. It got so bad my senior year I had to move home with my grandma. I lost contact with a lot of ‘friends’ and by the end of the year I only had a handful of people who I talked to on a consistent basis.

After graduation I got my dream job of becoming an elementary school teacher. I quickly learned a person with an invisible illness has no place in the fast-paced environment of the American workforce. I faced heavy discrimination in the workplace. Despite my attempts to educate my boss and coworkers about my condition, I was denied restroom breaks. Even with a doctor’s note, my administration accused me of trying to get out of my contractual duties. After a three-night stay in the hospital, I overheard a few of my coworkers talking. ‘It’s ridiculous Jess keeps calling off. Does she expect us to cover her classes all of the time?’ I felt hopeless and I began looking for a more accommodating school district. I found my diamond in the rough teaching third grade for the Massillon City Schools. From the very beginning, they were supportive and put the needs of their staff and students first. Little did I know just how important this supportive school district would be.

Two months after starting my new job, I got the unfortunate news I was no longer responding to my treatments. My ulcerative colitis had spread to my entire large intestine. My G.I. told me it was time to consider surgery to remove my diseased intestines. I was heartbroken. Doctors had always given me the impression surgery was a ‘last resort’ so I felt my disease had won. I was worried having an ostomy bag (a pouch to collect stool or urine) would not allow me to live the life I wanted to live.

When I came out of my appointment, my boyfriend asked me what the doctor said. I simply told him, ‘It’s time for surgery.’ He nodded, and we drove home in silence, taking it all in. I told him if he wanted to end the relationship I would understand. We are both very active people and he did not sign up to take care of a sick girl with an ostomy bag. He told me, ‘You’re crazy, I am going to be there for you no matter what.’ Long story short, we were engaged that November.

Courtesy of Jessica Mazelis

Two weeks later, it was time for surgery. I am blessed to live close to the Cleveland Clinic, one of the top-rated hospitals for colorectal surgery, but even with the best doctors in the world, I was terrified. The surgery was intended to be a multi-step open surgery with a 3-month recovery period between each stage. The first step was to remove my large intestine and rectum and create an ostomy. The second step would be to construct an internal reservoir called a ‘jpouch’ to replace my rectum. The final stage would be to reverse my ostomy and reconnect everything so I would be able to use the restroom the normal way. I was super bummed thinking my life would essentially be put on hold for almost a full year but then I realized my life had already been on hold for the past 7 years dealing with this disease.

When I woke up from surgery, I was hooked up to two IV’s, two drainage tubes, a nasal cannula, and of course my ostomy bag. I had staples from my belly button down to my pubic bone. I was in intense pain. Through it all, my fiancé never left my side. The next morning my nurses told me I could try walking. I couldn’t even make it out of the room before I had to lay back down. I felt my life crashing down around me. I looked over to my fiancé and instantly knew everything was going to be alright as long as I had him.

Courtesy of Jessica Mazelis

My week in the hospital was an emotional roller coaster but within the week I learned how to take care of my ostomy, set up home healthcare, and order ostomy supplies for the future. I went from not even being able to leave my room, to walking 5 laps around the colorectal surgery floor. I loved my ostomy immediately because it had given me my life back. I was pain free, medication free, and had no dietary restrictions for the first time in years. I felt healthy and strong. I was able to do everything a normal person could do. I even picked out my wedding dress with my ostomy. I was nervous going into my appointment my ostomy would limit my dress options. When I showed the wedding dress consultant my ostomy bag and she shrugged and said, ‘Oh that’s all? That’s not going to be a problem. Let’s find your dream dress!’

Courtesy of Jessica Mazelis

From the beginning, I had made the decision to use my experience to increase ostomy awareness. Overall people were supportive, and I met a lot of other chronic illness warriors in the process, but the internet can be a cruel place. Comments such as, ‘I would rather die than have a bag of poop attached to my stomach” and, ‘Ew that is disgusting, she will never find anyone to love her,’ were sprinkled in with the messages of encouragement. There were a lot of tears and moments of self-doubt, but I stayed strong. My fiancé told me every day how beautiful I was, and I began to believe him.

Courtesy of Jessica Mazelis

When it was time for my final surgery, I was hesitant to go through with it because I had become so comfortable with my new life with my ostomy. After a lot of thought, discussion with my fiancé, and praying, I decided it was now or never. I took a leap of faith to have the final surgery to reverse my ostomy.  This decision meant going through the emotional and physical turmoil of facing the unknown and recovering from yet another surgery. I knew whatever the outcome, I would always have my support system by my side.

Courtesy of Jessica Mazelis

On the day of my final surgery, I entered the all too familiar halls of the Cleveland Clinic and reflected over the past couple of months. I had become such a strong person, an advocate for those who feel defeated by their illnesses and I found a way to love myself in the process. I went into the operating room with these thoughts and the thoughts of a bright future as they pushed the anesthesia and I drifted out of consciousness.

I woke up to another successful surgery and I began a new chapter of my life. A chapter of adventures, healing, and couple of new scars, all with the love of my life by my side. Life is by no means perfect. I still battle this disease every single day, but I have learned through it all to always trust my gut (even if it is defective). For those going through this, my advice is to find your support system. We must continue to spread awareness and be unapologetically intolerant of the discrimination people with invisible illnesses face. Always remember, you are a warrior.”

Courtesy of Jessica Mazelis
Courtesy of Jessica Mazelis

This story was submitted to Love What Matters by Jessica Mazelis of Cleveland, Ohio. You can follow her journey on Instagram. Submit your own story here. Be sure to subscribe to our free email newsletter for our best stories, and YouTube for our best videos.

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