I was diagnosed with Crohn’s disease at a very young age, 11-years-old to be precise. Since then I've been on a roller coaster in terms of the severity of symptoms and my quality of life. Just before the final year of my college degree, I had a major flare. Everything the doctors tried to do to improve my health wasn't effective. I exhausted all options in terms of treatment with medication and with a narrow stricture in my colon, the only other option was surgery.
In October, 2013 I had a reversible loop-ileostomy formed. I named my stoma Richard Parker after the tiger from ‘Life of Pi’ because his character was necessary for survival and his presence was temporary. I adjusted to having an ileostomy pretty quickly and only had my stoma nurse show me one time how to tend to it and that was it! Although I recovered from my operation extremely well, it soon became apparent that this surgery was not enough for my body to shift into healing mode.
The symptoms of Crohn’s continued to worsen, and I was begging the surgeon to remove my entire colon to make my ileostomy permanent. So, in November, 2015 that's exactly what he did. At this point, I was very weak emotionally, mentally and physically. This time around my recovery was slow and difficult, however I can honestly say that the surgery was definitely worth it. Although I’m not completely symptom-free, I was feeling so much better than I had been in a very long time. As for living with a stoma? Most of the time I forget it’s even there, and just in case you were wondering this one has remained nameless.
I pay a lot of attention to my mental health. Controlling your mind while experiencing serious chronic illness is no small task, but I'm learning. I am not ashamed to say that I have seen three different counselors over the past couple of years—all have helped me in different ways. It took some much needed guidance from a few wonderful mentors, lots of self-study and practicing regular meditation for me to reach a stage where I finally learned (at least partially) how to control my emotions.
Back in June, 2014 I decided to shave my head as an awareness campaign for Inflammatory Bowel Disease. I organized a private fundraising event called "Rakhee Is Shaving Her Head" in aid of Crohn’s & Colitis UK and it was a huge success. We raised thousands of dollars for a truly great charity, but this wasn't the main reason for shaving my head. Having an invisible illness has been very difficult. I wanted to be seen and make my voice heard to prove that one person really can make a difference. I also wanted to prove to myself that despite being ill, I could still make a valuable contribution to society. I am proud to share my experience living with Crohn's and an ileostomy because it shows others that you can be completely open and still be socially accepted.