“Own Your Crohn’s”: Tina Aswani Omprakash talks to us about her IBD story

Tina Aswani Omprakash, a Crohn’s disease patient and advocate, helps empower the chronically ill and disabled. In fact, her site, “Own Your Crohn’s,” features her own experiences as well as the stories of IBD patients from around the world. We were lucky to have the opportunity to speak with Tina, where she told us about her Crohn’s disease diagnosis, how cultural stigma impacted her journey with IBD, why cultivating an online community is so critical, and the importance of participating in clinical trials. Here is our conversation.

Can you share a bit about your Crohn’s disease diagnosis?

I was first diagnosed when I was 22 years old, more than 15 years ago. My life before I had Crohn's disease was very different from my life now. I led a pretty healthy life as a child and as a teenager, so this really uprooted everything I had known about wellbeing. I honestly felt like I was in denial when this first happened because the concept of a chronic illness was not something that I could wrap my head around. When you're 22 years old, you don't know what chronic illness looks like. You're just looking to have a good career, going out with your friends, enjoying life after college, and maybe meeting somebody.

Little did I know that living with a chronic illness like IBD meant dealing with potentially constant pain, a number of rectal and abdominal symptoms, chronic fatigue, and needing to manage my diet constantly. Honestly, having a chronic illness is a lot of “project management.” And you never realize quite how much goes into it, especially with these invisible illnesses. You really have no idea looking at somebody from the outside how much it takes them to make it to work, school, brunch, dinner, or a party that day.

A few months into my diagnosis, I had started dating my now-husband, and I was thinking, "Okay, life's just going to go on as it is, and I'll take medicine and it'll be fine." It was not like that at all, and I think that's what one of the most jarring pieces of this experience. Being diagnosed with and learning to live with Crohn’s disease has been the biggest wake-up call in my life and the greatest rush into adulthood.

Fast forward to now: I'm 37 years old and I've had over 20 surgeries due to Crohn's disease. I was misdiagnosed with ulcerative colitis (UC), which is another form of inflammatory bowel disease. I underwent surgeries which were relevant for UC, but they were not customary for Crohn's, so a lot of things had to be reversed and redone. The persistent Crohn’s caused several fistulas for which I needed even more surgery. It's been a very long and arduous journey.

How has Crohn’s disease affected your personal life and career aspirations?

It was a lot to have my career taken from me because of this disease and it was a huge adjustment for me after 22 years of being relatively well. My life changed considerably as a result of my diagnosis: I had to leave my Wall Street job and I had to go out on a leave of absence several times. It was very, very difficult for my manager, coworkers, family, and friends to understand my challenges, and it really took a lot of self-worth and self-esteem out of me to not be able to do what everybody else my age does, like work, get married, and have kids.

I ultimately did get married, but there were a lot of problems with that, too. My in-laws were really against our marriage, culturally speaking. Even though ours was a love marriage and not a traditional South Asian arranged marriage, that paradigm of arranged marriage still prevails in my culture and that idea of a “good wife” still exists in South Asian culture. It revolves around cooking, cleaning, taking care of your partner, working, and having children. All of these things came into question with my illness. So, as you can imagine, there have been a lot of uphill challenges.

Is there a cultural stigma associated with Crohn’s disease?

Honestly, stigma is part of a lot of cultures. We all have different stigmas, but some of them are very similar. I've spoken to people from the LatinX community, Africa, the Middle East, and the Far East, and we tend to have similar values: out of respect for our family and elders, we sometimes aren’t able to take our doctor’s recommendations. This was something I was really up against because my family (of Indian and Pakistani descent) didn't want me on Western medicine.

There's a lot of that in different cultures. There's a lot of mistrust of doctors in the medical system and pharmaceuticals, which is definitely present in the black community because of Tuskegee and other medical experimentation, but it is very, very prevalent in other communities as well. The fear of medication, the stigma around medication use, the belief that Crohn’s is a “diet” disease that I had done to myself with my stressful career… This shame and blame game was really something that I had to contend with in addition to this diagnosis.

Because of this tug of war between my culture and modern medicine, there were many delays to my care and I feel that my prognosis worsened as a result. In order to deal with worsening disease, I had to arm myself with a lot of knowledge — I went to the Cleveland Clinic and Mayo Clinic to get second and third opinions, and in order for me to have proper conversations and make appropriate decisions for my care, I really had to be an informed patient. I was reading a lot of research studies, but I still wasn’t open to the world about my disease. It took twelve years for me to come out of my proverbial IBD “closet.”

And why? Because this is such a taboo condition in South Asian culture. We really don't talk about it, mainly because exposing a “flaw” like a disease and that too a bowel disease brings shame on our families. It really felt like social suicide for me to come out and I don’t say that lightly. But I couldn't live in shame or in silence any longer. I had to start sharing about my illness, not just for myself but because I knew there were so many other South Asians suffering in silence and in shame. And since then, there have been a lot of waves made. There have been lots more patients speaking out from different backgrounds these last few years. And I've been helping to elevate a lot of minority voices as well, as much as I can.

How do you help cultivate community for other people living with IBD? What do you like best about connecting with others in this space?

There's so much to learn. There's so much diversity in terms of the severity of and experiences with this illness. I'll speak to patients from the Philippines or from Egypt and hear very similar things to what I've gone through. And even though they have different words for it, even though they might have slightly different versions of that stigma, it's very real. Just by talking to them and connecting on that level, I feel like it helps to empower us both and helps us all feel more supported and connected.

I've created a support group with a team of a few other South Asians. It’s called IBDesis, which is dedicated to uniting and empowering South Asians with IBD around the globe. In just 5 months, we have well over 700 people in our community, which goes to show the need for support like this. Together, with a team of group moderators, we decided that we wanted to tackle these stigmas head-on as IBD continues to rapidly grow in our ethnic community. Even though the community is mainly for South Asians, there's a lot of people from the Middle East in our group and some people from the Far East as well. I wanted to make sure they also had a home and felt safe. We don't always feel comfortable talking externally about these things, so I want to give them a space where they feel comfortable sharing privately.

In addition to a private community, we also started doing advocacy work together on social media and in the GI space under the same name IBDesis. Some of us have platforms already and are starting to gain more momentum, and we're pushing out a lot of content to help the community. We are also featuring others’ stories as well as hosting live chats discussing many relevant topics to help South Asians living with IBD feel like they’re not alone. And most of all, we are pushing out education for patients and caregivers to help bridge gaps in care and understanding and ultimately reduce health disparities in our community.

Another way I advocate is by working with the nonprofit Girls with Guts, which is a huge patient advocacy organization that supports and empowers women with IBD and/or ostomies through the building of sisterhood and self-esteem. Together we have started Community Connection, a diversity initiative that brings together women of all ages, races, ethnicities, genders, and sexual orientations. We hold support groups, live chats, and share blog posts to help break down the barriers for patients like ourselves.

We're looking to expand that base, and we've been gathering blog posts from the diverse communities of women with IBD and ostomies and sharing our own stories. We’ve had a woman who has endometriosis with an ostomy from Mauritius share her story. We’ve had a woman from the Philippines with ulcerative colitis share her story and talk about the stigma she faces. We've held a Ramadan chat. We’ve hosted a Black Lives Matter conversation to understand the history of the atrocities around the Black members in the community and why there is mistrust with regard to clinical trials, research, and even COVID vaccines. We’ve also held a women's health chat, gathering diverse opinions on the challenges women face globally in living with IBD. I've taken my following of various minority women and brought them forward to do these chats or share their stories, usually in the form of a blog post.

The thing that I've noticed the last few years is, as I started sharing more and more of my story on my blog, social media, and on the internet at large, more women and men have been inclined to share their stories too. “If Tina can share about these stigmas, maybe it's time for me to share too.” These are words I often hear and it warms my heart. In my mind, that is empowering and makes my work fulfilling and meaningful.

A lot of what I do is externally on Facebook, Instagram, and Twitter, but I also work as a freelancer and a consultant (health-permitting). I consult in the clinical trials space, advising digital health companies on their platforms and pharmaceutical companies on their clinical trials, endpoints, and how to engage more diverse populations. My own experiences with clinical trials are something that I've been bringing back to the industry and to nonprofits to make sure that we are addressing all the unmet needs in the community.

I am also currently pursuing my Master’s in Public Health, slowly but surely, at Mount Sinai’s Icahn School of Medicine. Going part-time has been very rewarding because I've been able to supplement a lot of my own knowledge as a patient living with several chronic illnesses with the public health side of things, from clinical research to health literacy. I feel like that gives me a well-rounded approach to advocacy.

What advice would you give to people who are newly diagnosed with IBD?

For people who are newly diagnosed with IBD, I feel like it's really tough, right? I was talking earlier about the denial aspect. A lot of people will turn a blind eye, but there are some people who want to learn everything that's out there. I think it really depends on the person's personality and their approach. I think that at some point or another, people do want to find a community, and what I've come across is that newly diagnosed patients will follow me on social media, but they'll sort of lurk. They may not reach out, so I’ll reach out to them and say, "Hey, how are you? Thank you for following me. Do you mind if I ask if you or your loved one has IBD?” I'll start talking to them and then they will be like, “This is new, this is really overwhelming for me,” or “I'm just watching to try to understand more about my condition.”

There are some people who dive head-on and will join every group they can or follow every patient leader or influencer that they can. It really depends on the person's approach. What I would advise is if you're newly diagnosed, it's really important for you to learn about your illness. Do what's necessary based on your personality. If you want to engage with the community, there's a robust community online to engage with. If you want to engage in person, especially post-pandemic, there are support groups, especially with the Crohn's and Colitis Foundation, where you can do that.

But the point is you aren't alone in this; at the same time, however, you don't have to allow this to completely infiltrate and take over your life if you don't want it to. It really depends on that balance and what you want. But it is very important for you to learn about your condition. Ask your doctors. Don't try to just use Dr. Google for all your information, because there is a lot of misinformation out there as well, so be careful. But I also always encourage patients to go to the most credible sources that are medically reviewed, some of which I’ve written via the United Ostomy Associations of America and the National Alliance for Caregiving.

A lot of patient advocates who have worked really hard to put out good education and content are reliable sources, but a lot of university hospitals like the Mayo Clinic and Cleveland Clinic have reliable websites explaining the disease. Sometimes support groups can be overwhelming because there's a lot of information there, which can cause anxiety. I would advise doing what works best for your personality. Don't necessarily just jump headfirst into it. Sort of wade your way through it and figure out what works for you, how much exposure you want, and how much you prefer to watch from the sidelines as well.

Have you ever participated in a clinical trial or research study? Why is IBD research so important?

I participated in a phase III clinical trial of Stelara almost six years ago now, and I'm still on that medication. It was FDA approved a little over a year after I started it. Since then, the dosing has had to be tweaked because I had started to have disease activity pop up again. They put me in another clinical trial where they re-induced me on the drug at a much higher dose. The first time around, the researchers learned how long it was taking for patients like me to respond to the medication. They added an induction-loading dose, once it was FDA approved. And then, in the next study, which I did in 2019, I was re-induced on the loading dose, which showed researchers that they can sustain patient response on this biological agent by hitting the inflammation hard. So, I'm still on it. I recently had a procedure and was told that my Crohn’s is in remission. I couldn’t be more thankful because, after the number of surgeries I’ve had and medications I’ve tried, I felt hopeless until I joined this clinical trial.

While I still live with a lot of other conditions and digestive ailments, this drug has really saved my life and given me quality of life back. And I'm going to be very honest with you, if I had to do it again, I would do it in a heartbeat.

This is why I talk about clinical trials. I was so scared to go into one. I was like, “Oh, there's not enough research.” But the thing that patients often don't realize is that, with a lot of these therapies, we have done so many iterations of testing already. What do I mean by that? There are so many biological therapies out now, and they're becoming more and more advanced. This is not the first generation of biological drugs. So, I quickly realized, I don't really have that many side effects from this the way I might have from a different immunosuppressant that I had tried earlier. I learned in this process that researchers really have perfected these technologies.

We're often so afraid to try something that doesn't have robust studies behind it, but how are we going to make those initial studies happen and get such medications FDA approved if we're not going to participate? This is especially true for people of color like me! How are we going to learn what works for patients of different ethnicities and backgrounds if we don't participate? This is really important to me and that's why I talk about this. It really changed my life.

The reason why I talk about clinical trials is because I want to give people hope and understanding that this is not just testing on patients of color. This is about giving us real options to treat and manage our condition better. And we need those options. IBD is something that is considered a more modern disease, a more westernized disease, although it's expanding all over the world now. But here's the thing: there are not enough treatment options. The remission rates are very low, and there are lots of patients going through surgery after surgery, trying drug after drug, and not achieving remission. That was me. It took me 10 years. And I can't emphasize enough how important it is with the 30-40% remission rates that we're seeing in Crohn's and ulcerative colitis on biological therapies. It's very important for us to consider giving clinical trials a try.

In fact, I recently participated in a COVID vaccine study at my hospital just to see how robust my antibody response was after getting the vaccine and being on biological therapies, which are immunosuppressants, essentially. I've been mounting a similar response to the average population, which isn't the case for everybody on immunosuppression, but the point is it's really important for us to partake in these studies and know for ourselves.

Advocates like Tina are helping empower patients. As Tina mentioned above, one other way that patients can make a difference is through participating in research studies. Clinical trials are testing the safety and efficacy of investigational treatments for IBD, and people living with IBD are needed to volunteer to help move this science forward.