Patient Story: As if Having Crohn’s Disease Wasn’t Enough

My name is Aaron Blocker, I am 23 years old and I have Crohn’s Disease. My fight with Crohn’s Disease started when I was younger, I always have had stomach problems we just did not know what was causing them. In 2009 my very first semester of college when I was 17 years old I finally received a diagnosis and could put a name to what was causing me so much pain and sickness and could start treating it appropriately. Shortly after my diagnosis I was hospitalized for the very first time for a Crohn’s Flare up due to being extremely ill and needing to get medication in my system as quickly and safely as possible. Early 2010 I started Remicade infusions because my medications were not working and I was steroid dependent for 3-4 months, so starting Remicade was my best option. Once I started that I felt so much better than I ever have and was able to get off of the steroids and start to get control of my symptoms.

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So, about 2 years after my diagnosis I was in the hospital for the 3rd or 4th time and during that visit I had a CT scan done of my abdomen, well fortunately it caught the top part of my hip bones and they discovered that I had developed Avascular Necrosis of both of my hips and I was only 18 years old. Devastating news for me at the time because I knew inevitably my hips would fail me and I would need hip replacements we just did not know how long it would take. Unfortunately it did not take long because two years after I found out I had AVN I could barely walk without pain so we had no choice but to move forward with Bilateral Hip Replacements at the age of 20. Over a span of 6 months I had 3 hip surgeries 2 of which were the total hip replacements. That was probably the hardest year of my life to date, an emotional rollercoaster and a very tall mountain I had to climb. Today I am doing well, I have two brand new hips that work well enough for me to live a pretty normal life and I am currently managing my Crohn’s Disease.

Back tracking to 2010 after I started Remicade is around the same time that I created my Crohn’s and Colitis Support Page When I started the page it was to meet people with the same diagnosis but its turned into something so much more. We have over 21,000 members to date! I have two people that I brought on to help me manage it who have become some of my closest IBD friends (Jaime Weinstein and Sarah Simkin). I could not run it without them! I have had opportunities that I never dreamed of having such as speaking at conferences, being on Health Advisory Boards etc. I currently am working towards a PhD in Microbiology and Immunology I will be getting a Masters of Biology Research Degree starting in the fall and then going into PhD. I really want to try and mend the gap between IBD Research and IBD patient communities and also do hands on research as well. I could not do any of this without the support from the IBD community, my family and friends. I always loved the quote, “I have IBD but it does not have me” because I do not want my illness to define me I want to have control over my illness and use it to my advantage.

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Thank you all for reading this and being there for me and I hope to continue to make a difference in the IBD community as long as I possibly can.

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