What It’s Really Like To Live With Ulcerative Colitis – A Candid Patient Post
My name is Michaella. I am a 22-year-old lady from Western Massachusetts who got diagnosed with Ulcerative Colitis when I was in 8th grade, nine years ago. When I first started feeling symptoms, I thought I had an allergy to dairy, since dairy seemed to trigger abdominal pain and frequent bathroom visits. Around the holidays that year, I told my mom how I was feeling. We went to see my primary care doctor—and I’m glad that we did.
The next day, a Saturday, my primary care physician called to tell my parents I needed to go to the emergency room immediately. My inflammation levels were through the roof.
Introducing a diagnosis—and needle phobia
Starting the minute I walked through the doors of the ER, I was regularly poked with needles to administer fluids and steroids, and conduct blood work. During this time in the hospital, I experienced at least two needle pokes a day. My veins were collapsing due to anemia, which made the situation even worse. All of these pokes caused bruises from my armpits to my wrists by the time my weeklong visit was up. This is when, understandably, my fear of needles began. All the needles required at that time for IV or blood drawing caused nerve damage in my arms.
When I was a sophomore in college, I was prescribed a biologic, which came with an auto injector. I went to my doctor’s office to get the starter dose and learn how to inject myself. They gave me the tester pen and I was good at it. I felt like I could do it myself.
I needed to be administered four starter doses during my first visit. One shot was given to me by my dad in my leg. I did one myself in the other leg, and two nurses gave me one in each arm. It felt like a thousand bee stings. I froze, and the nurses in the room had to remove my shot for me. I began to hysterically cry and hyperventilate. The nurses needed to lay me down and talk to me to calm me. Once I stopped crying, about 20 minutes later, the lead nurse said, “It should not have hurt that bad.”
Well then, I guess my pain tolerance is lower than yours, I thought to myself, raging with anger, and fearing that I would have to regularly go through the whole ordeal again. It was awful.
A new option for self-injections
Ever since then, giving myself self-injections was impossible. I had to be given a sedative to help calm me down, and I had to have my boyfriend, who is also a nurse, administer the medication to me with my mom holding my arms down. It was a tense and stressful process, to say the least. Ultimately, I refused to take the medication, and got a temporary loop ileostomy. I was on the path to a total colectomy, which is the removal of your large intestine and having a permanent ostomy.
I was recently introduced to Portal Instruments. Thanks to the company’s innovative needle-free jet injection platform, I am hopeful that someday I might be able to go back on self-injector medications and reverse my ileostomy. I might be able to live a more normal life thanks to the emphasis on an improved patient experience. A new window of opportunity has been created for me, and I can’t wait to see what the future holds.
Read more at portalinstruments.com
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