My name is Tina, and my struggle with Crohn’s disease began 13 years ago when I was 22. I am from the New York City area, and my background is in legal and compliance for investment banking. In more recent times, I have become an advocate for the chronically ill and disabled. My battle with this beast of inflammatory bowel disease rendered me unable to work. I have been nonetheless actively involved with the Crohn’s & Colitis Foundation as one of the leaders of the NYC Teen IBD Social Group, through which I help to educate and advocate for teenagers, who like myself, are struggling with the most debilitating aspects of inflammatory bowel disease (IBD).
My struggle with Crohn’s derailed my career, my prospects for further education, many of my friendships, my sense of self, and my personality in my early 20s when my life was supposed to just be beginning. I had over 20 surgeries in seven years along with hundreds of procedures and imaging studies since my diagnosis. I’ve dealt with Crohn’s colitis, proctitis, several fistulae, abscesses, and cysts over the years in addition to multiple extraintestinal manifestations and diagnoses.
My life is now a perpetual case of living between doctor appointments and volunteering in between health crises. In addition to the Crohn’s and my permanent ileostomy, I manage a long laundry list of other chronic health issues, including chronic intestinal pseudo obstruction (CIPO), post-surgical irritable bowel syndrome (IBS), small intestinal bacterial overgrowth (SIBO), pelvic floor dysfunction, vestibular migraines, vertigo, inflammatory arthritis, sacroiliitis, allergies, sinusitis, asthma, pyoderma gangrenosum, hidradenitis suppurativa, erythema nodosum, Sweet’s syndrome, sciatica, peritoneal inclusion cysts, and autoimmune dry eye. And let’s not forget anxiety and depression, which are huge components of living with the uncertainty surrounding chronic illness.
Nevertheless, after four near-death experiences, I am thankful to be alive, and for every single surgery and every single breath. I am ever grateful for my ostomy, which has given me a new lease on life. With the help of my faith, my family, and the friends who stuck around, I have managed to pick myself up higher than ever before despite all the setbacks. One of the things I’ve worked incessantly to improve in this process has been my self-image, self-worth, and self-respect coming out of surgeries that ravaged my being, yet gave me life again.
My purpose in setting up this blog is for us all to realize that we can lead full and happy lives while living within the constraints of diseases and disabilities. I write about my story, IBD-specific issues, the psychosocial aspects of being young and chronically ill, in addition to interviewing others from diverse backgrounds who live with IBD and/or an ostomy. The theme I embed in my columns is to cherish and celebrate the very precious lives that we have in spite of being ill.
I welcome you all to “Own your Crohn’s.” Own your IBD. Own your chronic illness and/or disability. Own everything that might not fit societal norms and give it a voice. Because what knocks us down can make us stronger, fiercer, and more united if we let it.
I look forward to sharing my experiences with you all. Cheers to a future filled with good health and greater awareness of our conditions!
I love reading your comments and feedback so please feel free to drop a line anytime. And for the social media savvy, you’re most welcome to follow my columns on my social media pages: Facebook, Instagram and Twitter.
Love, light, and peace always.