Coping | IBD
I was diagnosed with Crohn’s at 9 years old. Luckily for me, Remicade kept my disease under control for 10 wonderful years through middle school and high school. My good health gave me the opportunity to grow up free from many hospitals and doctor visits. I was healthy enough that I was able to get an awesome summer job as a handicraft instructor at a scout camp! It was a very exciting moment in my young life. I even got my own camp nickname, Lady Shark. It was a big deal…..well, for me at least.
The next summer I was offered the position of handicraft director. Of course I was more than happy to accept. Immediately, I started planning on how I was going to decorate the lodge, what crafts we were going to do with the kids, and what type of leader I was going to be with handicraft crew. I was pumped out of my mind.
Unfortunately, that same year starting in January or so, I slowly felt my Crohn’s symptoms creeping up on me. I had been feeling this twinge of pain, that was getting more and more intense in my lower abdomen, after every meal I needed to run to the bathroom with an increasing urgency, and I kept feeling more and more lethargic and just generally unwell.
My gastroenterologist confirmed my fears, that my inflammatory levels were on the rise and that I was becoming anemic. My Crohn’s was full-on flaring. To combat this, we just kept pushing my Remicade treatments closer and closer together, as well as the occasional blast of prednisone, and of course additional iron supplements and vitamins. The treatment was sort-of working….enough for me to go to camp, which was what really mattered to me.
However, on an intellectual level, I knew it wasn’t good. I would come home from my college classes and collapse out of exhaustion. It definitely didn’t make sense that I was putting myself in the position of having to live outside in a tent, always on the move, in the summer heat for 2 whole months. However, I was determined to do it. It was my dream to be the director of my own camp area, and there was absolutely no way that I was going to rest at home for the summer instead of going to camp. No possible way was Crohns getting in my way. I just couldn’t allow it.
I remember, in desperation, looking up how to naturally lower my inflammatory levels through foods and alternative medicines. I went to the health store and bought aloe vera capsules, fish oil and ginger supplements. I even got a mini fridge for the back of the handicraft lodge, so I could keep blueberries in there because I read somewhere that they have natural anti inflammatory components. I was not under some impression that any of these items were going to cure me or do anything magical. I was simply grasping at straws, and I was going to do anything to pull this off.
Like most Crohnies, I am an expert at faking it, till I make it….and that summer, that’s exactly what I did. I remember several times when we were right in the middle of teaching a craft to the kids and I would hand my radio to another handicraft staffer and I would run out of the back door of the lodge, down a rocky hill to the bathroom, literally jump over a fence like Jackie freakin’ Chan, and explode in the stall out of breath, with tears in my eyes from the pain.
Hardly anyone at camp knew about my Crohn’s. I didn’t want the disease to define who I was. I didn’t want it to become the center of my world. I was afraid. I knew that my symptoms were getting out of hand. The diarrhea and vomiting were draining me dry, but I still pushed through that summer and felt like the most accomplished, person in the world when it was done.
Danielle is 25 years old. Born and raised in Lancaster, PA, currently residing in Manheim. She is a senior at Millersville University with a major in speech communications with an option in public relations and has the ambition of going to grad school for an MBA. She is a trained nurses aide and have worked as a camp program director. She is a Crohn’s Warrior, and got a permanent ileostomy in 2018. She spends any free moment she has with her 1 year old son. When it’s nice outside she enjoys taking walks to the playground and hanging out with grandma. She is new to sharing her story, but she hopes by doing so she can help others. IBD is an incredibly rough and sometimes lonely road to walk and no one should have to do it alone. She feels like she could write a book with all that she has been through and hopes that you find it interesting, but if it isn’t, at least she got to work through some of her emotions through writing.
Wow!! This is an excellent post. So proud of all the work you have done for yourself and not letting this disease take you out!