Posted by Quint Townsend on May 21, 2019
My name is Quint. I am 20 years old and attend college in Massachusetts. I was diagnosed with Crohn’s disease when I was 17, but had symptoms the year leading up to my diagnosis. A fun fact about me is that I love driving. In fact, I drove with my dad around the U.S. the summer before my first year of college. The trip was about 9000 miles and took three weeks.
The year before I was diagnosed with Crohn's was really difficult for me. My health was just below the threshold of where I could notice something wrong and I did not really have my Crohn’s symptoms (diarrhea and blood) until a few weeks before my diagnosis. Up until that point, I could make up excuses for the differences in my everyday actions (the frequent naps, eating much less). My symptoms came on really slowly the year before I was diagnosed, which is why I caught it as late as I did. Changes in my health happened slowly enough to the point where my old normal was replaced by the new normal.
At the beginning of the year I would eat two full waffles, take no naps, and make it through the day with no problem. Throughout the year, I would eat less and less without pain or discomfort, and nap more and more. I told myself I was trying to lose weight or that I was falling asleep a lot because my homework was difficult and boring. During finals my junior year of high school, I began to develop my Crohn’s symptoms. My primary care physician finally started to notice the trend when I went to my annual physical. She was the one who suggested I go to a gastroenterologist.
Even though I was diagnosed while still in high school, since starting college I have found my health has been inconsistent and difficult to manage. I have gone through four different sets of medication. I initially began my journey through college on Pentasa and Budesonide, then I tapered off of Budesonide to try to stop long-term steroids. I had been stable, but went into a horrible flare and switched medications to Remicade. Remicade worked in conjunction with Pentasa and other vitamins until it stopped all of a sudden. As a last ditch effort, I switched to Humira. Unfortunately, that never worked as I was flaring so bad that surgery was my only option.
While working my way through medications, I was also on a self-imposed strict gluten free diet my first year in college. It was easy to do at school as we have a section that is gluten-free, but I had a hard time snacking and eating enough. I could not access the cafeteria during the times I needed. And I lost a lot of weight throughout the full year I was gluten free. This affected me and those around me as I have had to miss trips and quality time with my family, friends, and girlfriend.
At the end of last year, I landed in the hospital four days before Christmas because of intestinal obstruction and a case of C. Diff (Clostridium difficile - a bacterial infection) that had redeveloped. I was given many IV antibiotics. Interventional Radiology decided through an MRI that nothing could be done at the moment. Surgery was halfway on the plate, but they were hoping that the antibiotics would help enough. I had a PICC line put in on Christmas Eve and I had a follow-up for a surgery consult on Christmas Day. I was sent home still taking high doses of antibiotics. Eventually, they stopped helping and I was then readmitted on New Year’s Eve. It was an emotionally and mentally debilitating time. I felt like I was missing out on opportunities to be with my family and my girlfriend and I was completely crushed when I heard I had to go back into the hospital. I did not talk to anyone except my nurse. My usually effervescent personality lost all of its bubbles. Even though it was not the way we wanted to spend our holiday break, my girlfriend was just beyond amazing, I cannot even put it into words. She was there by my side the entire time, through both hospital visits! She and my family and friends were instrumental in me not breaking down throughout these most difficult moments.
Eventually, I recovered from my surgery. Since then, I have done many things to better my quality of life and make sure it stayed where I wanted it! I have started regularly cooking for myself and really paying attention to what I am putting into my body. I used to eat whatever I wanted (after I stopped eating gluten-free) as I was so restricted for so long. I went and let myself go and ate really poorly, in retrospect. Now, after surgery and paying attention closely to what feels good and what doesn’t, I have restricted my diet to mostly chicken and turkey (for protein) and just eating much cleaner than I was before. I make sure that I take time for myself and minimize my stress. I schedule out things and make sure to leave time to relax when I need it. I have been more transparent with my professors, as I used to wait to tell them about Crohn’s. Now I make sure everyone knows my situation right from the start. I make sure that no matter what I get 7 hours of sleep a night, as I have realized that for me my symptoms get much worse and I cannot control my stress as easily if I don't.
I am also making connections with other people who have IBD. I was told about the PAC through a friend, and immediately was enthralled. I recognized, even through words, that the community surrounding the PAC was incredible. I loved the body positivity, as I really was angry at the fact that I had to have surgery since I just wanted to be anywhere else other than the hospital. I was seeking a group that could connect with me through my experiences, so being able to connect with the PAC, I was flooded with feelings of courage and strength for getting through my surgery and the past year of my life.
--
Stay in the LOOP - sign up for updates and never miss a post!
Read more posts from New PAC members >>