My Journey

Hello there,

As promise, I will tell you my story.

   In 2013, I graduated Susan E. Wagner high school. High school was definitely and interesting experience. I had a wonderful summer, and went in my first cruise. I played football in high school, it was a great time; high school is nothing without playing a sport. You really have a fuller experience. I was a big kid in high school. I was 5'9, about 210 pounds. After I graduated, I was determined to lose the weight.
   So, I worked my butt off. I worked out everyday, for a minimum for an hour; 7 days a week. I actually did lose a great amount of weight. I dropped my weight to about 180. That wasn't enough. I wanted to lose more weight, so I started running more. Miles upon miles, I lost more weight. At about 170 pounds, I started noticing changes in my bowel movements. As I ran, I started to experience very bad pains in my stomach. There was blood in my stool; small amounts, but noticeable enough to where I saw it. I would actually force myself to use the bathroom. Why? I'm not sure. I guess I liked the feeling of an empty stomach. I kept all this to myself; that was my first mistake. When you start experiencing this like this, you need to tell someone. A parent, a friend, a doctor; anyone.
   Eventually, something kicked me in my brain that I needed to tell someone. I informed my parents, and they took my to my first doctor. His name is Dr. Laqua. I don't remember what he originally diagnosed me with, but it wasn't UC. He gave me my first colonoscopy, and put my on Asacol. Everything seemed to work out of the first year, but that was soon to change.
   The medications were slowly not working, and I continued to keep that to myself. Over the summer of 2014, I flared up, and did not get treated. I didn't know what was happening to my body. In September of 2014, I landed myself in the hospital. I had been standing at my workspace, and started feeling extremely weak and faint. I begged my boss to let me leave early; which she let me. I laid in bed all day, until I visited my primary care doctor. This doctor sent me to the ER, where further tests were run. Turns out,  I was severely anemic, with a hemoglobin count of 4.1. I was treated, and started to feel a lot better. I was given a new GI right out of the hospital. Personally, she didn't sit well with me, so I changed my GI again. The man I was now going to had treated my cousin, who also suffers from UC. Unfortunately, he was unable to get my UC under control as well, even after he preformed his own colonoscopy on me. He then sent me to my favorite, and final doctor, Dr. Aberjel.
   This man has helped me through a lot, and has been my longest running GI, and my current GI. Dr. Aberjel unfortunately had to put me on steroids a number of times, seeing as how a lot of the drugs I had tried while being with him did not work. I feel as if I have tried almost any drug, even though I haven't. Dr. Aberjel first out me on Mecaptopurine, which actually at first, made me very ill, and also landed me in the hospital. The next major drug I tried was Humira. I used Humira for about half a year, while also being on Prednisone. As I weened off of Humira, it showed that it wasn't the drug for me. After we washed that out, we tried Cimiza. I took Cimzia for about 4 months, while weening off of Prednisone again. It also didn't work. I've been on and off drugs, and tried many things. I've had many colonoscopies, and about 9 different blood transfusions. With these blood transfusions, my blood changed. I have different types of anti bodies in my bloodstream because of all the transfusions. One of the transfusions actually didn't work because of this, and left me ill once again days later.
   Long story short, I've been through a lot. I may be leaving out a few details, but theres a lot to remember. UC has affected many things in my life. It has affected my ability to succeed the way I would like to in school. It has hindered my ability to stay healthy and keep a good workout routine. Most importantly, it has affected my relationships. I am always in a low mood, and can come off a bit angry or boring to people. Ive angered my amazing supportive girlfriend, and have been mean to family member when they didn't deserve it.
   Most people don't realize the affect UC has on our bodies. We always need to keep an eye out for the nearest bathrooms wherever we go. We need to watch what we eat, and keep track of medications.   It's not an easy life style.

   This is why I have decided to do the surgery. On Wednesday, June 29th, I will be having my first of three surgeries. (I will explain the surgeries in a different post, their preparations, etc.) I will continue to update this blog with my story, as well as answering questions to the best of my ability. If you, or anyone has any questions at all, feel free to email me at jorgano72@gmail.com
 
Be Well;
Johnny