Carol – Living My Life

Hi, I am Carol. I was diagnosed with Crohn’s when I was in 3rd grade, and have been dealing with it off and on ever since. January 2014, at the age of 25, I thought the world was ending. My Crohn’s was the worst it had ever been, and I had lost so much weight; weighing under 100 pounds. I was checked into the hospital and told that I needed a temporary colostomy to prevent further problems.

As a young single woman, I was devastated, but I had the surgery. A few months later, I realized the doctors had made the right decision. I had gotten back to my normal weight and could get back to living my life. I used that next year or so to do things that, a year ago, I would have never done. I went hiking and camping all over PA/MD/NJ, went to Iceland, went skydiving, and even did the Crohn’s and Colitis Foundation 5k only 5 months after my surgery.  I met the love of my life, Jordan, and got engaged. I got a new job a year ago, as a Senior IT Business Analyst and moved to northern VA. The last 3 years have been amazing.

One thing I wish others understood about having Crohn’s disease is that it is a lot more than just an upset stomach or having one bad day. When I am having a flare, I can be okay one day, and then feel unable to get out of bed for days. I have always tried to put on a smile and a brave face for events and important work commitments. Sometimes, this does seem impossibly hard, and usually those who really know me, and are true friends, know something is wrong. I have always just pushed myself knowing there may be consequences. I can’t count the number presentations for school and work where I threw up directly after. Again, others often don’t understand that Crohn’s disease is chronic- even if the medicine is working, stress, and other factors may make me feel bad at any given time.

Hearing a doctor tell you the medication options aren’t great for my various problems is extremely hard. In more severe cases, like mine, inflammation in the stomach can can be painful due to fistulas and other problems. Unfortunately, Crohn’s doesn’t just affect your stomach, it can cause fatigue and joint pain. So, yeah, sometimes this leaves me defeated.

As for living with an ostomy, it is something that I have come to accept. Of course its not something I have talked a lot about, mostly because they are stigmatized.  Sometimes people wonder why on earth I would have gotten one. This is mostly just because people don’t understand the struggles you can go through before getting one. Others don’t know what to say… the right response is “Wow, you are a really strong person. :)” For me, it has just become a part of me and pretty much saved my life. If you met me, would you even know unless I told you? No. If anything, my ostomy has made me able to face anything. It has given me a different outlook on life, and really taught me to not sweat the small stuff.

I would love to help anyone who is still in the “negative” stage of having an ostomy. I was incredibly lucky to have been surrounded by amazing people at the time of my surgery and after. They really shaped my positive outlook. Being apart of the Girls With Guts organization has also been amazing for me. I recently have been undergoing more surgeries, and I know I have a whole team ready to support me. With them by my side, I can keep living my life.