Meet Our Honored Heroes
Living with ulcerative colitis has been a challenge for me. After having my second child in 2006, I was immediately diagnosed with ulcerative colitis(UC). I went through a series of test, scans, x-rays, and medication. Being in the military was a big challenge with this illness and I was told that I was not supposed to be serving with this condition and I would eventually have to make a decision to be discharged.
During my career in the Army, I spent ten year battling this illness. I had monthly doctor’s appointment, was often out of work sick, and did not know what was wrong with me. I spent time going to the local doctors who told me that they could not do anything for me because my illness was not their specialty. Eventually I was medically discharged from the Army on 100% permanent disability status. .
Meanwhile, I developed inflammatory bowel syndrome(IBD), along with GERD causing constipation and diarrhea. In addition I developed H. Pylori, a serious bacteria. I have undergone countless colonoscopies, endoscopies, x-rays, CT scans, and ultrasounds. Recently, I have also had the capsule camera, CT enterography, and a HIDA scan. I am now being checked to see if my UC has developed into Crohn's, as well as to see if I need to have my gallbladder removed. Plus I have to have a cancer screening each year to make sure I do not develop colon cancer.I go in and out of remission not knowing what the next day will bring.
I am now 38 and have had UC for the past 11 ½ years. I have been on the same medication since I have been diagnosed and am unsure if I need something different. I know have stomach spasms every night, get red marks on my skin, bruise easily, suffer from fatigue, get nauseous and start vomiting for no apparent reason, and have really bad joint pain. I have also had a fluctuation in weight going down to 125 pounds then up to 196 pounds.
This illness does not come with an instruction manual, nor does it tell you how many friends you will lose along the way because they do not understand, or they just do not want to bother to educate themselves about the disease. But through the years, this disease has been humbling so I decided to get more involved with the Crohn's & Colitis Foundation to better educate myself and others about IBD.
My story is like so many others yet it is like no others because it happened to me and it began over the summer before my Fifth-Grade year when I was 10 years old. I had pain and we thought I had pulled a muscle playing with friends. On the first day of school, I got sick; and because I had been sick several times that Spring, my mom took me to the doctor. She mentioned the pain I had been experiencing to the doctor, and asked what to do. He told us that if I was not better in 3 days then we needed to come back. Of course, I was not better; and in fact, things seemed to be worse.
When we returned to the doctor, he called a surgeon at Wolfson Children's Hospital and sent us to the hospital right away. We met with the surgeon and I was scheduled to have surgery 24 hours later. Turns out the pain was not a pulled muscle at all; it was a fistula caused by an infection in my body, and I needed surgery to remove it. It was scary to be told I had to have surgery.
After the surgery, I had many follow up visits and I had to have a colonoscopy amd endoscopy with biopsies to get a diagnosis. Because I have sores in my upper and lower GI track, my diagnosis was Crohn’s Disease. Within a few weeks after surgery, I was losing a half a pound a day. I was not able to eat; and I got sick on the vitamin drinks I took to help me heal.
Days after my official diagnosis of Crohn’s, I spiked a high fever and my parents rushed me to the ER. When my mom laid me in the ER bed, I weighed only 37 pounds. Three days later I started my first treatment and it worked. I started eating and gaining weight almost immediately.
For the past three years I have received a treatment every other month and that helps me enjoy swimming, family vacations, and hanging with friends. I do things to take care of myself that most teenagers do not think about, but inflammatory bowel disease(IBD) is now part of who I am. I have a great team of doctors and nurses that care for me. We know that many advances have been made in the treatment of IBD and we are all hopeful for a cure one day soon.