CareAline is a company built on real life accounts of having to problem solve during a time of immense stress and illness. We continue to grow and evolve but will never forget how we were born, why we are here and why we continue to do what we do. Allow us to introduce Brian, who generously offered to share his journey leading up to our relationship with him.
Thank you Brian for sharing your story*.
-the CareAline Team
Life with a Chronic Illness
Growing up, my childhood was completely normal. I loved to play outside with friends, play sports, and be active every chance I got. When entering high school, I played football and lacrosse, two sports which I both loved and wished I could keep playing forever.
At the end of my sophomore year, lacrosse season had just ended and everything in my life seemed to be going great. That’s when my life got completely turned upside down. I started to get shooting pains in my lower abdomen and experienced a slew of other gastrointestinal issues. After missing a few days of school, my parents decided I needed to see a doctor. We were referred to one of the top pediatric GI doctors in the area and eventually managed to get an appointment.
The GI ordered a bunch of tests and it was determined I needed to undergo a colonoscopy. The preparation the night before was much worse than the actual procedure which was some of the best sleep I had ever gotten. When the doctor came in after I woke up he told me that I most likely had Crohn’s disease. I had never heard of this disease so he explained to me that it was a chronic disease that would be with me for life. When I first heard the diagnosis I was actually a little relieved to know what was wrong with me and I didn’t fully understand the consequences of what a chronic illness actually entailed
While the first few months after my diagnosis weren’t too bad, when the new school year started I got extremely sick and ended up in the hospital. My doctor tried a bunch of medications, but for months nothing would quell my symptoms. This resulted in me basically missing more than half of my junior year of high school. I would have multiple tutors come to my house to give me lessons and I obviously wasn’t able to play the sports I loved. Eventually I was started on a treatment called Remicade, which actually did seem to make me feel better. Although I would have to sit in the hospital for about two hours with an IV in my arm every two months, I started to feel like myself again.
Remicade turned out to be a great treatment for me. I was able to go back to school for my senior year and could continue playing sports. I ended up going to Tennessee Wesleyan University on a lacrosse scholarship, graduated university with honors and got a great job working in accounting. I got engaged to my beautiful wife one year out of college and my life was going perfect until December of 2018. I went to visit my fiancée around Christmas time, when my lower abdomen started hurting along with the other various Crohn’s symptoms. All I could think about was how the pain was equally as horrible as it was when I first got diagnosed with Crohn’s disease. I ended up in the hospital for five days and was told that Remicade was no longer a valid treatment option for me since my body has built up antibodies to it. This meant that we had to find another treatment option.
My doctor suggested that Stelara would be the best option. I would get an infusion right after I got out of the hospital and I would then inject myself with a shot every 8 weeks. All I could think about how great this was. The doctor found a treatment that would work for me and my life would go back to normal, just like how it had when I received the Remicade treatment. Well that wasn’t completely the case. For about six to seven months after the infusion and getting the shot every eight weeks, I was still in minor pain, but just figured the treatment was taking some time to fully kick in. About nine months after the infusion I was in so much pain and had rapidly started losing weight to the point where I lost 30 lbs over the course of the year, with more than half of it coming in the past 6 weeks. When I finally got in touch with the doctor, he stated that I needed to go to the emergency room that night to have multiple tests run because something was obviously not right.
When going to the emergency room this past month, they realized that I was having a severe flare up and had multiple ulcers in my lower intestine. They also ran tests and realized that even though I could my last shot about five weeks ago, there was no medication in my system. Meaning that this treatment could have stopped working just like the Remicade did. They started giving me a steroid to help with all the inflammation in my system and started me on fluids. About a day later, they came to the conclusion that I would need to have a PICC line put in due to how malnourished I was.
I had never heard of PICC line so after asking the doctors some questions, I decided to do some of my own research on the internet. On the website reddit.com, I follow the the r/Crohns Disease subreddit which is a community for people with Crohn’s to connect and get support from others with the disease. I figured other people had to go through the same thing so I looked for posts about people needing to have PICC lines put in to try and make me feel comfortable with the whole thing. After reading a bunch of posts about people saying it really isn’t that bad, I saw someone suggest getting a CareAline sleeve to replace the sleeve the hospital gives you. I thought it was interesting so I made sure to make a note of it.
After the procedure of having the line inserted, I could tell the mesh sleeve that they put on was not going to be the most comfortable in the long term, especially trying to sleep with it. When they told me I would need to be sent home with the PICC line to continue getting nutrients at home, I decided to go ahead and order the CareAline sleeve after reading all the positive reviews. This sleeve is honestly so much better and having the pocket for my lines instead of having them wrapped around my arm has been great. Luckily I should be having the PICC line removed in about a week, but I’m so glad I came across the CareAline sleeve as it made the last month much better than it otherwise could have been.
*This narrative was prepared or accomplished by a customer of CareAline named Brian Feeney in his personal capacity. The opinions expressed in this article are the author’s own and do not necessarily reflect the policy, position or opinion of CareAline or CareAline employees. This includes all mention of treatment modalities. The acceptance of this story and publication to CareAline’s website in no way implies endorsement.
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