yoocan - Sofia Ali - My Journey with Ulcerative Colitis

My Journey with Ulcerative Colitis


Sofia Ali

Ulcerative Colitis Diagnosis

At 16 years old, I was worrying about normal teenager things: school, boys, clothes, and exams. Never did I think at 16 I would have to worry about staying alive. As June of 2016 was coming to an end, I began to get sick. At first I thought it was the flu, or stress, or maybe just food poisoning, but after close to two weeks of blood in the toilet and abdominal pain that brought me to my knees, I knew something was wrong. I was too embaressed to tell anyone that I was going to the bathroom over 15 times a day, so I made my appointments and went by myself. That was my first mistake. The first doctor told me I must be constipated, and prescribed me a laxative. The second told me I had hemmoroids. It was not until I was vomiting blood, and unable to control my bowels that my parents finally took over and took me to the ER. After two more weeks, and one colonoscopy I was diagnosed with Ulcerative Colitis. Colitis is an autoimmune disease causing inflammation in the colon. My doctor told me that many people live normally with this disease, aside from being on medication for the rest of their lives. So here I was at 16, going from perfectly healthy to a chronic illness within the duration of a month. I stayed in the hospital for 11 days, and in those 11 days I started on prednisone, lost 25 pounds, and became nearly unrecognizable. On the day of my discharge my mom asked the nurse, "What is the worst case scenario with this disease?" and my nurse answered back, "Well other than death, a total colectomy, but your daughter is so young, she won't need to worry about that." I don't know if it was negativity or fear or even just fate, but as we walked to the car I told my mom that I had a strong feeling that's what would happen to me.

How I Came to Lose my Colon

Fast forward 4 months, daily prednisone, 10 hospital admissions, 9 blood transfusions, 6 doses of remicade, 4 iron infusions, and 2 ambulance rides, and my body was deteriorating faster than my doctor had ever seen. She transferred me to a new hospital, and as she spoke to my mom I heard the word "surgical". I lasted one more month without surgery. The first two weeks were amazing. Then C. Diff destroyed what was left of my colon. I tried to go to school, but my body gave out on me. In October of the same year I was rushed to the hospital. After one night of no sleep, and excruciating pain, a man in dark blue scrubs walked into my room, and I had watched enough TV to know who he was. He told me I had run out of options, and I don't know if I was mentally ready or just sleep deprived, but I begged him to take my colon out. When I woke up it was like I was alive again, I was in tons of surgical pain, but my body felt as if it had been cleansed of all its toxins. My surgeon told my parents that if I hadn't come to the hospital that day, my already perforating colon would have exploded inside me. I might've died. In that moment, I was so grateful to be free of that evil organ that I actually laughed. My surgeon told me I was as good as normal, that I could start living again.

What Ulcerative Colitis has taught me

Since then I've had 6 surgeries. Most were to get rid of my ostomy, as I was 16 and afraid of people's judgments. Each surgery was brutal and each time I reminded myself of the end goal: I would finally be "normal". Finally I have the reversal surgery and I managed to last 3 months without my bag. By the end of those three months I was back to where I was when I had my colon, nearly lifeless. The day I got it back was the day I realized that life does not stop because I lost an organ, or because I have an ostomy bag, or even because I have a chronic illness. I keep fighting, because this ostomy gave me the opportunity to do so. So  whenever I think about my battle with UC, and whenever I grieve over the loss of my colon, I think about how far I've come, and how far I plan to go. Even as cheesy as it is, I think that for someone whose gutless, I sure do have a lot of guts!

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