Her tone serious and earnest, Tina says “I had an epiphany. I can do a lot of good by participating in clinical research, and good could come out of this terrible experience.”
As a recent college graduate in 2005, Tina felt like the world was just opening up. She was excited about starting her career on Wall Street as a compliance professional in investment banking. This beginning was an entirely different universe from the one she inhabits now, as a globally recognized health and disability advocate for Crohn’s disease, a form of inflammatory bowel disease (IBD). Tina’s own diagnosis with Crohn’s was far from straightforward, testing her physical and emotional stamina. “I realized my case was very severe, and a bit of an anomaly and I should be in clinical research,” Tina says.
Initially, Tina was misdiagnosed in her early twenties with ulcerative colitis, another form of IBD. Her father’s life had been claimed at the age of 39, from Crohn’s that had morphed into colorectal cancer, so Tina was particularly aware about being proactive when it came to health issues. Tina describes her initial symptoms as “…kind of an on again, off again. Some flare-ups were bad, and some were not so bad.”
Tina worked to make accommodations for her symptoms and kept living life as usual. After a vacation in Mexico, she became very ill with food poisoning. Physician-prescribed antibiotics made Tina develop c. difficile, an infection caused by the overuse of antibiotics.
Tina’s weight plunged from 135 pounds to 85 pounds over a six-month period in 2008.
Her experience with the disease was compounded by socio-cultural influences. Being of South Asian descent, Tina says “I felt like a failure,” because many community members view gastrointestinal disorders as a disease fueled by poor personal diet choices. “My culture and many families are oftentimes against medications to treat IBD,” Tina explains. “By the time I tried biologics (whatever was available at that time to treat the Crohn’s), it was too late.”
In 2008, Tina underwent life-saving surgery to remove her colon, but her health issues were far from over. But that was a challenge in and of itself. Her family and elders within the community were against ostomy surgery. Tina felt looked at as an outcast but went ahead with the ostomy surgery.
Six months post-surgery, Tina was navigating life with a stoma (a surgically created opening in the abdomen that connects to the digestive system to allow urine of feces to be diverted out of the body) and was slowly recovering. Due to the stigma around ostomies in her culture, at 25, Tina underwent a procedure to create a j-shaped pouch from her small intestine, that would enable her to defecate similar to how she did pre-surgery, and the stoma was reversed. She quickly developed pouchitis, inflammation of the j-pouch, which escalated into symptoms of bloody diarrhea. Tina combatted the symptoms for a few years with antibiotics, but the pouch began to burrow holes into other organs (abscesses developed and fistulae broke through).
At this time, her diagnosis was changed from ulcerative colitis to Crohn’s disease.
It turned out that Tina had developed multiple fistulae that further impacted her quality of life. After living with the j-pouch for 6 years, it had to be removed. Tina, this time, received a permanent ostomy. The wound from the j-pouch was not healing correctly, and a second medical opinion and MRI confirmed that pieces of the j-pouch and rectum were still inside Tina’s body, causing a pelvic fistula that could potentially impact her spine, causing paralysis.
“It was a really hellish period,” Tina recalls. “I had seven surgeries over eight months to correct the botched surgery that resulted in a chronic rectal wound and caused the large abscess and fistula.”
“At the end of this whole process, another fistula had developed and I had had it. I decided to go into a clinical trial for (another) biologic.”
The results were encouraging.
“It took a good six months, but the fistula closed, and I was declared to be in remission,” said Tina.
Tina has had multiple complications from the many surgeries she has endured. “It’s complicated – it’s not cut and dry,” says Tina. “I have multiple diagnoses of other diseases that I continue to manage, but Crohn’s has really been the beast in my journey.”
There were several factors that motivated Tina to investigate clinical research as a health care option.
“I was like ‘Just get me on something!’ I am sick and tired of this disease and the surgeries and I needed to do something to make it stop,” says Tina. The physicians and staff of the clinical trial explained the details thoroughly. “I did a lot of thinking and research, and I decided I couldn’t keep living my life in and out of the hospital. Initially, my family was hesitant but they too were sick of seeing me suffer. My husband was on board with my decision.”
Tina’s experience underscored the importance of an accurate initial diagnosis and proactive disease monitoring and treatment. Between that and her experiences with cultural stigma and shame, Tina decided to shift her focus to patient advocacy.
“I learned a lot on my own through the research I did. I had become pretty savvy at reading technical science journal articles. I learned a lot from the doctors I met when we were discussing how to treat my disease,” said Tina.
Tina’s journey as a patient with Crohn’s disease has impacted her personal and professional life in profound ways.
“This has become a coming-of-age story – I realized I didn’t have to be ashamed of having this disease. I wasn’t disrespecting my elders because I was treating this disease. This is my body and this is my life and I have to pay that respect to myself as well.”
“I don’t want anyone else to suffer, and that’s why I talk about clinical research and educate others on its importance.”
Tina started her advocacy work by launching a website, OwnYourCrohn’s.com, in 2018. Tina is now a well-known and respected voice in the Crohn’s community, regularly speaking at medical conferences and acclaimed academic research hospitals, as well as being widely quoted in the media. Tina is currently pursuing her Masters in Public Health at Mount Sinai. Tina also recently co-founded a community called IBDesis in conjunction with 5 fellow South Asians who don’t want stigma and fear of medications to overshadow diagnosis and treatment of IBD.
When asked if she recommends clinical research participation to others, Tina says “Hands down, no question about it. I particularly want people of color, who may be skeptical of clinical trials, to know that every iteration is robustly managed in a clinical trial.”
“You know you’re going to get the best care possible. It was honestly a no-brainer for me and I’d do it again in a heartbeat.”
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