coping with flares,  Crohn's,  living with IBD,  Traveling with IBD,  Ulcerative Colitis

Owning My Crohn’s Vegas Style

This blog post is a throwback to 5 years ago when I traveled to Vegas to celebrate Prashanthi’s 30th birthday! Happy birthday, Prash! This trip was important to me because it was one of the first times since my diagnosis that I let my guard down disease-wise to travel with good friends.

In 2012, after my first RV fistula was found, I had my j-pouch diverted and my 2nd ostomy put in place. After recovery, I decided that my illness had been consuming me whole. It was now do or die–either I restore my sense of self by challenging myself or I languish in misery from not trying.

I hit a turning point when I decided it was now high time for me to own my Crohn’s and my ostomy. Not just for myself but for my loved ones. I was sick and tired of not being there for my friends and not doing the things that made me happy.

Prash’s birthday was one such example. I flew out to Vegas in between procedures donning a knee brace given the arthritic pain in my knee. I wasn’t ever well enough to travel but I knew I had to try. And most of all, I wanted to try. I wanted to be like every other healthy 29 year old woman who traveled with her girlfriends. So I seized the day by putting my trust in the universe and in my friends. Despite a few minor hiccups, I returned home with my confidence restored!

I did all sorts of things to make it easier to travel in advance of my trip. For instance, I packed all my snacks, meds, enemas and ostomy supplies separately with a doctor’s note to make it easier for TSA to examine. I set up wheelchair access in the airport because I struggled with walking thanks to my knee.

As hard as it was to let my guard down by sharing a room and bathroom, it was endearing to know my friends cared and were able to work around my needs. They were respectful of my frequent bathroom use, my dietary restrictions and gave me time to rest in between activities. I just had to ask and they were all ears. So thank you, Prash, Pinky and Anjali, for being such kind, compassionate and accepting friends!

This trip made me realize I CAN still have fun even though I’m chronically ill. It taught me that if I don’t try, I won’t know my limits. I learned I CAN choose not to lead a miserable existence by finding ways to work with and around my condition.

So own your Crohn’s, own your #ostomy, and take that leap of faith to pursue the things you enjoy most. Seize the day to travel and live the fullest life possible within the limits of your condition.

P.S. Bandage dresses worn with clunky knee braces are an “in” thing when worn with confidence! 🙂

My name is Tina and I am from the NYC area. Due to the severity of my Crohn's, multiple surgeries and extraintestinal manifestations, I have served as a case study for a number of renowned doctors and surgeons across the country. I hope that my advocacy work and the medical research done on me help current and future populations of IBD patients. In a world where the #metoo movement has erupted, I believe it is high time for patients like myself to speak up about the ravaging aspects of chronic illness and disability. The intent of this blog is to give those suffering in silence and in shame a voice that creates greater awareness and acceptance of our daily struggles. I own my chronic illnesses and disabilities and my goal is for you to as well!