For those of you new to my site or just wanting to learn more about my story, I figured I would do a blog post talking about my where my IBD journey started to where I am now. I want to emphasize that my experience with IBD has never been linear. It has required a lot of flexibility, patience and courage, as I’m sure other patients with IBD or any chronic illness can agree. Living with a chronic illness requires daily effort and decisions that may seem small to others, mean a whole lot more to us. I pray that in my lifetime, there is a cure for IBD.
It all started when I returned home from my first study abroad trip to Bilbao, Spain in the summer of 2018. I began to experience sporadic digestive symptoms that were not of concern to me. I thought I was just readjusting to processed American food after eating such clean, delicious food in Spain! My symptoms persisted on and off for a couple of months and it wasn’t until November that my health took a turn for the worst.
My dad had shoulder replacement surgery right around Thanksgiving that year and a few days later ended up with a blood clot in his lung, almost killing him. He spent two days in the hospital. I remember being so scared and worried that I would lose my dad. A week after this incident, I saw blood in my stool. This was cause for concern and I made an appointment to see a gastroenterologist immediately. They ran some allergy tests on me – gluten, dairy and fructose – but they all came back negative. The next step was to schedule a colonoscopy.
Due to it being the holidays, the colonoscopy procedures were all booked up until January. I would have to wait one month for the scope and for any sort of answers. That one month felt like a lifetime. I was so frustrated that I had to sit around and wait, not knowing what was wrong with me, and most importantly having to take all of my finals while running to the bathroom every hour. I so badly wanted to fix whatever was going on with me, but instead I had to be patient and trust the process.
I had the colonoscopy on January 4th, 2019. I was scared because obviously I had never done a colonoscopy before. I have only seen my parents go through the preparation and did not think it was too fun. When I woke up from anesthesia, the doctor came over to me with my parents and said “You have pancolonic ulcerative colitis. We found active, bleeding ulcers throughout your entire colon. We will put you on medication immediately to get this under control.” I don’t remember crying or being sad, but relieved to finally know the answer to my problem and be given a possible solution.
Following the colonoscopy, I started taking mesalamine which immediately relieved my symptoms and allowed me to leave the house more often without fear of needing the bathroom. This was the case for three months, until I began to flare-up again in April. I started a new course of therapy on prednisone for a few weeks to get it under control before I traveled abroad again to Santiago, Chile in the summer of 2019. I was not 100% when I traveled to Chile, but I did it anyway! During my fourth and last week in Chile, I began to severely flare-up again.
I came home from Chile and immediately went back on a short course of steroids, but they failed to bring me into remission like they had the previous time. At this point, I had to choose between starting a biologic medication or getting a Fecal Microbiota Transplantation (FMT) (yes, it is exactly like it sounds) which has a low success rate in patients with ulcerative colitis. After about a month of thought and one ER visit, I decided to take the biologic route and start Humira. My first dose of Humira was the last week of August 2019, right before I started my final semester of college.
The Humira helped me tremendously in the first month of taking it. Once October came around though, I started to flare-up yet again. I was confused because in my opinion the Humira was my last resort – it needed to work. At that point, my doctor recommended I get a second opinion from a GI doctor in Utah. In January of 2020, my parents and I flew to Salt Lake City and met with a GI doctor from University of Utah Health. My appointment was two hours long and he patiently answered all of the questions my family and I had. The verdict was to increase my Humira dosage from bi-weekly to weekly injections.
After increasing my Humira dosage, I began to see great improvement. But I also didn’t get my hopes up about it knowing that in the past this has happened many times before. In addition to my Humira dosage increase, I made small changes in my diet which proved to be the secret ingredient. Ever since March of 2020, I can proudly say that I have been stable and in good condition. I am in symptomatic remission, but it is unclear if I am in histological remission until I get a colonoscopy again early next year. I pray that how I currently feel on the outside is reflected on the inside.
Looking back, each of my flares were triggered by a stressful event. This is why I am so adamant about making time for self-care and destressing from my daily life through techniques like yoga, meditation, essential oils, running, reading, etc. Nothing is more important to me than my health. Without being healthy, I will not be able to live out the life I want and explore all the world has to offer. I am so grateful to be where I am today and to be symptom free. I look forward to what the future holds for me.
What has your chronic illness journey been like?