My name is Benjamin and I am a rising senior in high school. I was diagnosed with Crohn's disease when I was 10 and a half. Since then, I have found joy in art, Boy Scouts, numerous sports, and theatre.

Most of the people I am around on a daily basis and during activities do not know that I am living with an invisible disease. To others, I appear pretty normal, and keeping this way may seem easy, but as all those with IBD know, this is an ongoing battle of planning doctor appointments, swiftly entering and exiting class to use the restroom, and staying caught up with classes and practices. For me, one of the largest obstacles I faced to maintain this appearance of "normalcy" was my camping merit badge. 

The camping merit badge is a requirement to reach the rank of Eagle in Boy Scouts, and requires the scout to complete numerous tasks as well as a substantial amount of camping overnight in various locations...excluding scout camp. Camping is normally a blast for me; however, with IBD some problems began to arise. For example, not all campgrounds have established restrooms...or restrooms that would be great to use (when you spend a fair amount of time in the bathroom I think it's only fair to be a little choosy), not all camp meals fit dietary restrictions, and many other variables that are for the most part out of my control.

I have found I am most healthy and happy when I am busy; however, having a balance is always critical so my health does not spiral out of control. Planning and communication always seems to be some of the best tools to maintain this balance. For example, looking at campouts well in advance allows my family and me to find out where, when or if there are any conflicts, plus figuring out smaller details such as food. If it looks like something I would be able to do, then communicating with the leaders would be the next step. If there is a baseball practice that conflicts with an infusion or doctor appointment, communicating with the coach that I can't make it in advance definitely helps. A theater performance? Then scheduling an infusion the day of an opening night is out of the question. Having an open line of communication to teachers and coaches is super important, but most importantly communicating with my family is critical for everything. If I felt symptoms worsening or some other area of concern increasing, they would be able to help.

The idea of joining ImproveCareNow and the PAC was first presented to me by my GI doctor, before this though I had not even heard of it. After taking a quick glance through the website and exploring the toolkits, I saw that I had been missing out on a whole lot of information that could have been a little helpful during the past years. I also saw that this information is stuff that I actually know about! I realize that although I have not had Crohn's as long as others, I have had it for a large part of elementary school, all of junior high, and almost all of high school. These are difficult times for anyone - but especially difficult for kids with IBD!! I look forward to using my experience to help others.


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