This disease had taken its toll on my body, my spirit, and my soul. There have been times I felt broken and couldn’t see any way out. I have felt worn down, defeated and didn’t think I could come back. I have felt that I wanted to get out of my own skin, to be a new body. At 25 I was hiding symptoms of something from my family, my husband, and my doctors. When I finally realized that my youth alone was not going to get me out of it I confessed. I told my husband, who in turn told me to share with my family my secret. My secret was I was bleeding for two years on and off strongly every time I went to the bathroom. That week in July 2017 when I confessed I made an appointment with my MD I told her my symptoms and she told me I needed to see a GI immediately she told me bluntly that she believed I had colon cancer. I went home and broke down. Here I was seemingly healthy and I went from being completely fine to maybe cancer I couldn’t handle my overwhelming emotions. A GI fit me in the same week for a colonoscopy and everything seemed to be moving at a rapid pace. I woke up from anesthesia groggy and ready to hear my fate, he told me I didn’t have cancer, he told me I had Ulcerative Colitis. He told me I would never get better, he said I could fight it with many different medications but there was no cure. All I wanted to know was if it was fatal, he said it wasn’t but complications could be like with any chronic illness. I was satisfied and relieved, I thought I could take on anything as long as It wasn’t cancer. I was wrong..
In 8 months I went from proctitis (inflammation in only the first 6 inches of the rectum) to full on pan colitis (inflammation of the entire colon). This was rare and unexpected, I had a less than 15% chance that this would happen, only 10 in 30% of people with proctitis actually spread and mine spread all the way and very extremely. I had cramps that toppled me over, left me bedridden, I had urgency, I was losing nutrients frequently, I was bleeding heavily and I was using the bathroom 25+ times a day. I lost 40lbs in two weeks, I was disabled, I was defeated and I was becoming dangerously anemic. I was one heavy doses on steroids because I refused to go to the hospital my resting heartbeat was 160+ I could feel it beating out of my chest, I couldn’t be moved or touched without running off to the bathroom in pain. After a month of suffering at home I went to the hospital for a scan and they told me I couldn’t leave. I got worst in that first hospital stay, I was turning white as a ghost I had brain fog I could barely find energy to speak or eat. I resisted blood transfusions numerous times until a nurses helper came in and told me how a girl my age had a level a little better then mine and had a heart attack and that was where I was heading. My husband looked at me with fear, he told me I needed to fight better. So I did. I got one transfusion, and then another and then another until it got to a decent point. Later I would continually get these transfusions for the next year. I left the one hospital and my doctor told me I needed someone better than him, he sent me to the doctor who would not only save my life, but give me my life back. He told me I needed to go in the hospital and I wasn’t going to come out until I was mostly better. He told me I would go on a biologic medication that was a form of chemotherapy, He told me I would need a stronger dose and that it was this or surgery left because of how badly I had gotten sick. I took the Remicade, it stuck, it started working slowly. I left that hospital with hope, it took me 6 more months to leave my house fully, but I did it.
During those 6 months I went to my first TakeSteps walk, my nurses at the cancer center told me not to because my anemia was bad again that it would be too much. But I did it. I did it to give back to my cause, to be around people like me and to see light in them. They gave me hope, I walked 1 mile in NYC with Sebastian, it took me probably what was an hour, I was out of breathe and tired but I did it with him by my side. That’s when I promised I would always support Take Steps because maybe one day in my lifetime I would see a cure. Maybe one day I wouldn’t have to feel that way anymore.
1 year later I went into remission, and I have had 2 amazing years of normalcy. My life is full of invisible handicaps. Even though I’m in remission I’m plagued with PTSD, I have anxiety, I get tired and need an extra nap here and there, I carry a handicap placard with me even though I look perfectly fine and if I workout just a little to hard I get bruises all over me for unexplained reasons. My hair has finally grown back from losing a lot of it when my organs were shutting. Ive lived fully these last two years in remission, I was even able to spread out my infusions, until recently. I’m starting to slip slightly, I’m grasping to my remission. That is why after this crazy year in lockdown I need to Take Steps. I need to fight for my remission and I need to help contribute to a cure. If you read this whole thing then maybe you would be willing to helping me and all the many people suffering with this disease to find a cure. If you can donate a few dollars, or even if you cant and can just raise some awareness it would go a long way. Thank you for listening to my journey, I am fighting to keep my remission, sometimes you just have to tell yourself to “breathe, darling. Your survived before, and you’ll do it again.”