Through Sickness and in Health
By: Erica Hernandez
I was diagnosed with Ulcerative Colitis in 2012, and was prescribed mesalamine to try and control my symptoms. In early 2014 in an attempt to better control my symptoms, I had started using a type of birth control to suspend my menses to only 4 times a year. In fall 2014, my symptoms hadn’t entirely gone away. So my GI Nurse Practitioner decided to change my medicine to a different class of medication (azathioprine). My body completely rejected it. Instead of getting better, my colon started bleeding more. My GI NP was very difficult to get ahold of, and I didn’t live near to where I was being treated. So I decided to find a new GI doctor closer to home, but by that point it was too late.
In February of 2015, I was hospitalized for a blood transfusion with a hemoglobin of 5.8. During this hospitalization, the doctors also discovered a blood clot in my brain. Birth control causes an increased risk of blood clots, but what I wasn’t informed of the fact that active UC also has an increased risk of blood clots. So put the 2 together and it was a recipe for disaster. After that was discovered there was much discussion between neurology and GI about whether or not the blood clot would be surgically removed. In the end, I avoided surgery and was prescribed blood thinners. This all happened about 3 months before my wedding.
During my first hospitalization, I gave my then fiancé the option of walking away from our engagement. When I suggested this, he responded with “that’s a stupid question. I’m not leaving you.” Many of the doctors were very impressed with his dedication to helping me get better. I was hospitalized one more time shortly after the first time with severe blood loss and C. Diff. Once I was discharged the second time, I began taking Remicade. The week before our wedding I had a dose of IV iron, 2 pints of blood, and a round of Remicade. I miraculously looked alive and somewhat healthy for my wedding. After my wedding, I was being treated by a general doctor, a gastroenterologist, and a hematologist. Unfortunately I developed antibodies to Remicade, and then in the fall of 2015 was switched to 6MP. My body rejected 6MP like it rejected the azathioprine, and then I was prescribed Humira. Humira seemed to work, but at a higher dose. Unfortunately, my insurance company wouldn’t cover the higher dosage, so in the spring of 2016 my husband and I started contemplating surgery. My GI doctor wanted me to try one more medication, Entyvio, before having my colon removed. Unfortunately, my body didn’t respond to Entyvio either. And on October 4, 2016 I had my colon removed.
Throughout my fight with UC, I tried to work, but I went from full-time to part-time by changing jobs in 2015. Then I was laid off in April 2016 due to the company I worked for closing. Although I lost my dream job, being laid off was a blessing because the UC had progressed to a point where I was having troubles making it to a bathroom in time. I frequently soiled my pants, and carried a change of clothes constantly. I was in constant pain and couldn’t sleep more than 2 hours together before needing the bathroom. After my surgery, a majority of the pain was gone almost immediately.
I had a choice between a box and a bag, and to me the decision was simple…a bag. I have never regretted my decision to have my colon removed. I am fortunate in that I have had an amazing support system throughout this ordeal. I wouldn’t be alive today without them. I was supported not only by my husband, who would get up with me in the middle of the night to hold my hand as I writhed in pain on the toilet and kept me positive. But also by my mother, who is a nurse and took care of me like she did when I was a little girl. (A girl will always need her mommy.) Although I lost many friendships due to the UC, I gained many other friendships that helped me through the surgery and recovery.
I am still recovering from my surgery, but overall I am better. I’m no longer bleeding, and that’s the most important thing.