TINA
Chron’s Disease
Meet Tina. She had 20 surgeries in 7 years and hundreds of medical procedures while being misdiagnosed and prevented from accessing doctor-recommended treatments and medicines. Tina suffered a decade of emotional and medical traumas. On one of her most memorable July 4ths, her doctors told Tina they may not be able to save her. It was one of four near-death experiences. Read more about Tina’s “decade from hell” which inspired her advocacy efforts on behalf of patients with Crohn’s disease and for step therapy reform.
My “decade from hell” started in 2006 when I was 22 years old. My symptoms were so severe I had to be hospitalized – several times – and complications made my condition significantly worse. I was prescribed antibiotics and steroids for what was thought to be ulcerative colitis. Some medicines worked for a short period of time, but after my condition worsened, coupled with serious complications each and every time, it became clear there was something else going on.
I couldn’t eat, couldn’t sleep, and my colon was severely damaged. I experienced a dramatic, dangerous weight loss and continued to get progressively more sick. My vision was blurred, and I eventually had to be fed intravenously. On July 4, 2008, I was rushed to the hospital for emergency surgery and was told the grim news that they may not be able to save me. I was weak, and surgery was a considerable risk, but not having surgery came with significantly dire consequences. At the end of 2007, I was 135 lbs. By mid-2008, I had tried every medication and alternative treatment and was just 85 lbs. I was dying.
In the South Asian culture, one did not speak about these types of medical issues. It was considered taboo, and I was discouraged from trying Western therapies and to avoid proven medicines because I had a bowel disease, which those around me claimed could be “cured” with diet and alternative medicine. All this, despite the fact that my Father passed away from colorectal cancer from Crohn’s disease at the age of 39 when I was 8 years old. I also lost my Aunt – my Dad’s sister – to colorectal cancer brought on by Crohn’s a few short years later.
Five years into my nightmare, in late 2011, my diagnosis was finally changed from ulcerative colitis to Crohn’s disease, and by this time, my life had been derailed. My promising career on Wall Street ended. Friends were less than supportive, and I couldn’t blame them; how could they understand the predicament of a 28 year old woman with such a serious case of Crohn’s? I felt guilty and like a burden on society, and I could barely function. In this process, I witnessed my sense of self and my self-confidence falling away.
In the last decade, I’ve dealt with Crohn’s, colitis, proctitis, several fistulae, abscesses, and cysts in addition to multiple extraintestinal manifestations and diagnoses. In addition to perianal, fistulizing Crohn’s disease and my permanent ileostomy, I manage an endless list of other chronic health issues, including gastroparesis, post-surgical irritable bowel syndrome (IBS), small intestinal bacterial overgrowth (SIBO), pelvic floor dysfunction, dysautonomia, vestibular migraines, vertigo, inflammatory arthritis, sacroiliitis, allergies, sinusitis, asthma, pyoderma gangrenosum, hidradenitis suppurativa, erythema nodosum, Sweet’s syndrome, sciatica, peritoneal inclusion cysts, and episcleritis. And let’s not forget anxiety, depression and medical PTSD, which are huge components of living with chronic illness.
In spite of all these diagnoses, my insurance company continued to require me to try and fail on drugs – sometimes the same drugs – before I could get access to the medicines my doctors originally prescribed. Doctors wanted me to be on Remicade, but my insurance company continued to deny access until I failed steroids and immunosuppressants.
There is strong evidence that if insurance had approved my usage of Remicade back in early 2008 before my first colectomy surgery, my colon could have been saved, and my prognosis and journey could have looked very different today. There is overwhelming evidence that early proactive treatment of severe inflammatory bowel disease with biologics could have prevented complications of my Crohn’s disease. This includes multiple fistulae and the endless array of extraintestinal skin and joint manifestations I have suffered. There is strong evidence that my near-death experiences could have been avoided had I been treated to a target early on by my physicians without the interventions and delays health insurance caused.
And this is why I advocate in favor of step therapy reform. I lost my 20s and my early 30s to Crohn’s disease, and it took 10 years for me to start a meaningful recovery. My life is now a perpetual case of living between doctor appointments and volunteering/freelancing in between health crises. I share my experiences and advocate on behalf of other patients who I hope will never have to experience the delays and denials I faced. If my doctors were calling the shots on my treatments, my story would have been drastically different.
So, as I would say on my blog, Own Your Crohn’s: So, own your Crohn’s, own your autoimmune ailment and take charge of your health by speaking up and becoming your own best advocate. Without advocacy, we as patients cannot seek change to an insurance system that doesn’t understand how much we suffer on a daily basis.