The U.S. Centers for Disease Control and Prevention says six in 10 adults live with a chronic disease. "Own Your Crohn’s" blogger Tina Aswani-Omprakash is one of those Americans who has battled chronic illness.
Since she was young, eventually getting her diagnosis at 22 years old, Aswani-Omprakash has had over 20 surgeries related to her Crohn's disease.
Now, she's taking on her story and sharing how she pushed through her chronic illness.
Crohn’s disease is a type of inflammatory bowel disease (IBD) that causes swelling in the lining of the digestive tract. Symptoms may include severe abdominal pain, diarrhea, fatigue, weight loss, and malnutrition. Aswani-Omprakash has battled extraintestinal symptoms of eye, joint, and pain manifestations since she was a child; however, she was always told by doctors that her symptoms were no pressing concern.
As an 8-year-old girl, Aswani-Omprakash lost her father due to Crohn’s disease, which became colorectal cancer. She says it was difficult as a teenager to receive medical care due to her lack of health insurance. It wasn't until 2006, after more digestive symptoms like constipation and GERD began to become more prominent, that she sought medical care.
As a working 22-year-old in January 2006, Aswani-Omprakash visited her primary care physician and asked to receive a colonoscopy. The conversation with her provider was difficult, after all, Americans are not recommended to receive a colonoscopy until they are 45 years old. In those years, the recommended age was only higher.
"It was a fight to get him to understand what I wanted, but he finally did refer me to a gastroenterologist," Aswani-Omprakash tells Healthnews. "I didn't have any known Crohn’s symptoms per se other than my constipation and GERD and joint pain, but they found inflammation, and within months of that, I flared."
Aswani-Omprakash says the recommended gastroenterologist did little to manage her symptoms and was told she was going to be ok. In June 2006, Aswani-Omprakash began to experience her first "flare-up," which led to bloody diarrhea and, ultimately, hospitalization. She received her second colonoscopy around the time symptoms spiked and was diagnosed with ulcerative colitis, another form of inflammatory bowel disease (IBD)
As a young adult, Aswani-Omprakash notes navigating the complexities of the American health care system was a challenge.
"I was 22 years old at the time and remember being very frustrated, thinking, 'Oh my god, I don’t know how to manage this, I don't understand the health care system,'" she says. "It is like you have to give yourself a crash course in it because you don’t have a choice. You don’t really get it by reading books, you have to experience it."
In the summer of 2006, a friend recommended Aswani-Omprakash to sit down with an expert at Johns Hopkins University to discuss her condition. She says the conversation was enlightening and proved to her she needed to find a more experienced physician. Aswani-Omprakash found a gastroenterologist who held a private practice but was affiliated with New York University, closer to Aswani-Omprakash's home.
Although Aswani-Omprakash wanted to lock down the best medical care, she was not ready to make long-term choices to accommodate her illness. She says continuing to eat spicy food, which was part and parcel of her South Asian culture, and social drinking with friends only made her feel worse.
I was determined to figure out what was going on with me, but at the same time, I’m not going to lie, I had mixed emotions about this. I was severely in denial about the dietary and potential lifestyle changes I would have to make. I wasn’t committed to making the changes in my life and thought I could just take the medicine and work the 15-hour days I was working and then go out with my friends and colleagues.– Aswani-Omprakash
Aswani-Omprakash says her denial phase lasted one-and-a-half years. Just when she thought some symptoms were beginning to go away, she got "hit hard." In late 2007, she caught a stomach bug after visiting Cancun with her boyfriend, now husband, and her symptoms increasingly worsened, and in 2008 she was hospitalized.
Crohn’s disease diagnosis
The medications Aswani-Omprakash was consuming were not working, forcing her to go on a biologic in May 2008. Biologics use a living system and include a variety of products like vaccines, blood components, allergenics, somatic cells, gene therapy, and tissues.
She says the choice to select a biologic medication was difficult for her family. Aswani-Omprakash says in her culture, there is often a mistrust of modern Western medicine. The pressure of her family telling her "no," but her body telling her "yes" only weighed more on Aswani-Omprakash’s condition.
"During that time, I suffered a lot," says Aswani-Omprakash. "I was being fed by total parenteral nutrition (TPN) to sort of keep me alive because I was so malnourished. I deteriorated so much because I was going bloody diarrhea 30 to 40 times per day."
Those conversations with family over procedures only grew when Aswani-Omprakash was recommended to receive an ostomy from a surgical consultation after biologics failed to mediate symptoms. On Independence Day in 2008, Aswani-Omprakash underwent an ostomy and took several months to recover.
She later would receive a J-pouch, an internal pouch made from the end of the small intestine that connects to the anal canal. Before the J-pouch was functional, she developed heavy inflammation, which would later be diagnosed as Crohn’s disease.
Aswani-Omprakash says after taking antibiotics for two years following the J-pouch procedure, she developed a fistula, which is a common and severe manifestation of Crohn’s disease. After multiple surgeries in late 2010 to relieve the fistula, she was finally diagnosed with Crohn’s in early 2011.
Over the course of the next few years, Aswani-Omprakash underwent more procedures, which included another ostomy, J-pouch removal, and multiple setons placements for various fistulae. Despite feeling broken inside, Aswani-Omprakash was able to visit a specialist at Mayo Clinic to receive medication in clinical trials. In 2016, Aswani-Omprakash reached remission after a decade-long fight.
"So many years of struggling, trying different medications and surgeries to try and get this under control. There were times I didn’t want to push through it, and I would say it was family, faith, my mom, and my husband who helped me. But, it was really hard, and there were so many times my mental health tanked," Aswani-Omprakash says.
Advice for others with chronic diseases
Aswani-Omprakash started to volunteer for the Crohn’s and Colitis Foundation in 2016. She had grown confident in 2018 to share her story on her "Own Your Crohn’s" blog, which has garnered significant attention globally. In 2019, Aswani-Omprakash started her journey to acquire her Masters of Public Health and, in 2021, launched her own non-profit — South Asian IBD Alliance.
Aswani-Omprakash says her life has come full circle with her able to help others who were in her situation. She encourages those with chronic illness to be willing to accept and adjust to their disease to make things easier in the long run.
With regard to owning her Crohn’s and living a fuller life, Aswani-Omprakash often tells other patients, "It isn’t just about not achieving your dreams but setting realistic goals along the way. I think acceptance is one of those things that is key to this disease. It is a chronic illness, which means it is lifelong, and you have to make adjustments to your life based on the fact this is going to be your whole life.”
The CDC says arthritis, cancer, diabetes, epilepsy, heart disease, and lupus are the most common forms of chronic diseases in the U.S. Chronic diseases are the leading cause of death and disability for Americans. For those who feel like there is no hope, Aswani-Omprakash encourages people to develop a strong mindset and find psychological support to push through.
"There is a light at the end of the tunnel," Aswani-Omprakash emphasizes. "Your life matters just as much as anyone else. Never think that just because you have this disease and are in and out of the hospital all the time your life is not as important as the next person."