Paul

I’ve had hydrocephalus since birth so I’m no stranger to hospitals, doctors, surgeries and bad news. Unfortunately, that wouldn’t disqualify me from receiving a Crohn’s diagnosis in 2016. What has surprised me since that diagnosis is just how insidious Crohn’s is within myself and how widespread it is among the wider population. I have gone through a lot of mental battles just in dealing with hydrocephalus but as I grow older, I seem to have fewer issues related to it. When Crohn’s came into my sister Carli’s life and then into mine, I was suddenly thrust back into a world of new unknowns, new questions, and new fears.

I watched Carli go through all of the typical misdiagnoses, several different types of treatment options, steroid use which caused weight fluctuation, mental health swings, operations and so many other traumatizing experiences. In many ways I was lucky to have seen her endure it before I had to. My parents already knew a lot more, Carli was on a better path to good health, we could prime my gastroenterologist with even more detailed family history. I had my own unique challenges but I didn’t have to go through it alone. It has taken years to come to terms with all of this and I haven’t found all the answers I seek but I’ve learned to navigate in a way that is productive with the help of this community.

There are thousands of people out there who have gone to dozens of doctor appointments only to settle on a Crohn’s diagnosis simply because all other possibilities were eliminated. Living with constant uncertainty is debilitating and I want to help change that for future Crohnies.

These days I know a lot more about myself. I have a high pain tolerance. I’ve learned to accept that public bathrooms are often disgusting but I appreciate they exist. I like to show off my scars. Most of all I like to tell my story so that more people will know the silent suffering caused by this disease. It is my hope that with proper funding and awareness we can do the research needed to find better treatments, create more comprehensive support including support for mental health, and one day find a real long term feasible cure. 

Good luck to you, Marc! Your efforts mean the world to so many people, in fact, they bring me to tears. It is an honor to be acquainted with such a determined and supportive person. 

Marathon #81 – Recap