Destigmatising Life With a Stoma

Tina Aswani Omprakash encourages people from diverse cultures to speak up about IBD and stoma surgery.

Read about Tina’s quest to eliminate the stigmas around Crohn’s, colitis, and stomas.

Tina Aswani Omprakash is an advocate, blogger, speaker, and thought leader. She is also a person with Crohn’s disease and lives with a stoma. She has dedicated her life to urging others with IBD and who have a stoma to own them fully, in order to lead happier, richer lives.

“Give it a voice, because what knocks us down can make us stronger, fiercer, and more united if we let it,” explains Tina, who learned this lesson first-hand.

When meeting this motivated, confident woman, you would never imagine that she has experienced a myriad of health issues while continuing to support others. She encountered many roadblocks in her journey to where she is today.

A Misdiagnosis and Multiple Surgeries

Tina was born into a close-knit South Asian family in New York that taught her to aim high and achieve a successful career. So, she was elated when she landed a fast-paced job with an investment banking firm on Wall Street after college. Then, at age 22, inflammatory bowel disease (IBD) started causing her pain and fatigue, and she was uncomfortable telling others what she was going through. Tina was diagnosed with ulcerative colitis initially, and she underwent a series of surgeries resulting in temporary ostomies that her doctors were able to reverse.

Alternative medicine is widespread in the Indian community, and practitioner after practitioner gave her remedies that made her ill. Although they were well intended, they suggested that she had brought the illness on herself because of her diet and her stressful work life. She started blaming herself, but also knew deep down that she had no control over her disease.

Crohn’s Disease and a Permanent Stoma

Eventually, Tina’s diagnosis changed from ulcerative colitis to Crohn’s disease, and recurring bouts of fistulas (abnormal openings between two organs or vessels) forced her to decide whether or not to get a permanent ileostomy. Unfortunately, a decision to have a stoma would clash with her culture’s high standards for jobs, marriage, and health.

“In Indian culture you hide your disease,” explains Tina. “It was a tug of war between the possibility of having a full, healthy life and upholding the South Asian standards that I was brought up with.”

Tina was not the only one in her family who had faced pressure to live up to those cultural ideals. In fact, her father had struggled with Crohn’s disease as a young man. When his doctor recommended an ostomy, he refused due to concerns around marriageability. When he finally underwent ostomy surgery 15 years later, it was too late. He passed away from colorectal cancer when Tina was eight years old.

“My aunt also had Crohn’s and I wondered why nobody was talking about genetics,” says Tina. “I witnessed my father’s passing and I didn’t want to wait until I had cancer to have the permanent stoma.”

At 28 years old, Tina made the decision to take her life back and underwent surgery for a permanent ileostomy. Afterwards, her life blossomed, and she was finally able to travel, eat more of her favorite foods, go on long walks, and be a full partner in her marriage.

Becoming an Advocate

When Tina connected with various gastroenterologists and patient advocates on Twitter to learn more about her condition, she realised that she wanted to become an advocate herself. “We are suffering so much by delaying our treatment,” Tina admits. “We cannot look at the stoma as a last resort, but as a viable treatment option and potential solution.”

It took four years for Tina to decide to come out publicly as a person living with a stoma. Her illness had already derailed her career and any prospects for further education, and it had negatively affected her self-esteem, but she wasn’t going to let it stop her from speaking out on behalf of others in diverse communities.

In 2016, when she was finally in remission from Crohn’s, Tina wrote a few well-received articles and led a women’s support group for the Crohn’s & Colitis Foundation. Two years later, The Foundation named her a "Take Steps Honored Hero" for being an advocate in the Crohn’s and Colitis community and sharing her story to inspire others. Despite her fears, she accepted the award and spoke in front of 600+ people, and her story went viral on social media. There would be no hiding after that!

Supporting and Empowering Others

After the story came out, a flood of publications reached out to her. She also received speaking invitations and requests to advise healthcare companies. She created a private Facebook group for people who hesitate to identify as having a bowel illness, so they would feel comfortable asking questions and receiving support.

Some of her followers have messaged her saying, “The stoma surgery option has been presented to me, but I want to do everything possible to not have one,” or “I’m too young for that, and I don’t have a cancer diagnosis.” Tina finds this devastating. “People need to live proudly with Crohn’s disease and own it every step of the way,” she says. “Stoma product technology has come such a long way; nobody will even know that you have a pouch. I can still wear a sari – I just tie it a little higher.”

Tina empowers others to speak up though her website Own Your Crohn’s, and her social media platforms on Facebook, Instagram and Twitter. She co-created IBDesis, a global initiative comprised of a team of South Asian, or “Desi,” advocates with IBD and/or stomas in order to help other promising voices in the South Asian community speak up and destigmatise IBD and life-saving stoma surgery. The mission of IBDesis is to create resources, education, and awareness for South Asians around the world living with IBD and/or stomas to minimize the cultural stigmas and normalise the diagnosis in addition to treatment and/or surgery.

Tina volunteers with Girls With Guts, a popular non-profit organisation. She is the Diversity Chairperson for their Community Connection initiative. “Our aim is to grow the number of voices from diverse communities sharing how to live a fulfilling life with IBD and how an ostomy has improved their quality of life,” says Tina.

Though she feels fulfilled, Tina still has days when she’s susceptible to her illness. Yet, even at her most vulnerable, she manages to reach out to others and share her experiences. The support and prayers of her newfound friends help her pull through and continue her mission. Her advice to others with IBD who have undergone stoma surgery who want to do advocacy work is to hone in on what is empowering them. “Find what makes you whole and give it a voice,” advises Tina. “To help eliminate stigmas, you have to feel comfortable with yourself first and be authentic about your struggles.”

The world has taken notice of how Tina is empowering others. Her Own Your Crohn’s blog was named one of the Best Crohn’s Disease Blogs of 2020 by Healthline Media, and one of the 2019 Top IBD Blogs for Advocacy by MyTherapyApp.com. In addition, Tina’s advocacy work won the Healio Gastroenterology Disruptive Innovator Award for “The Patient Voice” in 2019. More recently in 2021, the Crohn’s & Colitis Foundation recognised Tina for her phenomenal leadership and powerful impact on the IBD community with the Above & Beyond Volunteer Award.

IBD knows no culture or standards—it can happen to anyone, and can change life for better or for worse. Tina chose to make something great out of it. “Diseases like IBD don’t define us, but they do shape our perspectives; they help us develop the empathy and ability to provide support to others,” concludes Tina. “I don’t take life for granted anymore and that’s the silver lining with this illness.”

Tina Aswani Omprakash is a health advocate for patients living with chronic illnesses and disabilities. Through her writing, social media presence, and public speaking engagements, she spearheads public health causes, including those creating awareness for IBD (Crohn's disease and ulcerative colitis), life-saving stoma surgery, and initiatives supporting global women's and minorities' health. She is presently working on her Master’s of Public Health at the Icahn School of Medicine at Mount Sinai. Tina lives in New York City with her husband, Anand.