The Importance of IBD Advocacy in South Asian Communities , with Tina Aswani Omprakash

Episode Transcript

Ariel: Hello, and welcome back to another episode of the “Colon Health Podcast.” I’m your host, Ariel Bridges. And today, we have Tina Aswani Omprakash with us. Tina, how’s it going?

Tina: Hi. How are you? It’s going very well. Thank you so much for having me here today on your podcast.

Ariel: Thank you so much for being here. And can you introduce yourself and share what it is that you do with our audience?

Tina: Sure, absolutely. My name is Tina Aswani Omprakash. I am a patient advocate. I’m also an MPH student, masters of public health student at Mount Sinai’s Icahn School of Medicine. And I advocate on behalf of Crohn’s disease patients, which is a form of inflammatory bowel disease. And I also have an ostomy and do talk about that and many other digestive conditions and autoimmune or immune-mediated inflammatory diseases.

Ariel: Oh my goodness. So much good stuff here, which leads me to say, I always start off by having our guests share their journeys on the podcast because I think it’s so helpful for patients who may be in a similar place to hear from someone else who’s gone through it. So would you mind sharing your journey with our listeners? I imagine yours must be pretty lengthy, but feel free to share as much or as little as you’re comfortable with.

Tina: Absolutely. And I think mine has been a long and winding journey. I was diagnosed about 16 years ago, but prior to that, I was suffering from constipation since childhood, forms of like irritable bowel syndrome, even GERD, like an acid reflux in my teenage years. So I was having some digestive issues throughout and inflammatory bowel disease seems to run in my family, which is kind of unusual I’ve been told, given my South Asian descent. My family’s from India and Pakistan.

So I was diagnosed 16 years ago based on the fact that even though I wasn’t having tons of symptoms around Crohn’s disease, like rectal bleeding or abdominal pain or bloody diarrhea, anemia, even though I wasn’t having those because it runs in my family, I had escalated it to my GP and told him, “Look, I think I need to have this looked at.”

And I had a colonoscopy. I was a misdiagnosed with ulcerative colitis, which is another form of inflammatory bowel disease. So I think it might be important for me to even talk about the differences between Crohn’s and ulcerative colitis. And we can get to that in a little bit, but I wanted to just share it’s been a long journey. I’ve had over 20 surgeries in this process when I was finally told that I actually have Crohn’s disease five years into my journey.

It’s a little bit different the way that you treat it, especially surgically. And I had the surgeries done for ulcerative colitis and now things had to be reversed and changed and I have to live with an ostomy bag. So there were a lot of complications along the way, many medications that did not work, plus cultural issues and mistrust that myself and my family were dealing with, which led to significant delays in care. So here I am today, 21, 22 surgeries later, and on a good medication that was a clinical trial that I was in seven years ago. I am actually stable now, but I’m dealing with multiple conditions.

Ariel: Wow. I think it’s so important. We’re gonna get more into the cultural implications of the space in a moment, but I would love to start off with what you said. And can you just go ahead and share the difference between Crohn’s and ulcerative colitis?

Tina: Absolutely. So this is a really great question. So inflammatory bowel disease is basically an umbrella term covering bowel diseases from the mouth to the bottom. So there’s two forms of inflammatory bowel disease. Ulcerative colitis is mainly some inflammation, ulceration that would be present in your colon, which is also known as your large intestine and in your rectum. So it can cause pretty significant disease and complications.

Crohn’s disease can also present in the colon. And this is why it’s tricky to make a diagnosis because a lot of people can start off with a Crohn’s disease in the colon that can look very similar to ulcerative colitis, but the hallmark of Crohn’s disease is that it can spread into the rest of the small intestine, go from the mouth to the bottom, because inflammation and ulcerations, yes, but also granulomas.

Also, it can break through the intestines known as penetrating disease, create these tunnels called fistulas, which can break out onto the skin or leak into organs from your intestines. So that’s another hallmark of Crohn’s disease. Another one is also stricture, which causes narrowing of the intestines due to the inflammation.

So these are sort of the differences between Crohn’s and ulcerative colitis and they are managed differently surgically. For instance, with ulcerative colitis, what they do is they can remove your colon and give you something that’s called a J-pouch that’s fashioned out of your small intestine. That J-shaped pouch is then connected to the small, tiny portion of the rectum that they leave inside so that you can go normally and not have to wear an external ostomy bag.

That only generally tends to work in ulcerative colitis. For me, that pouch, that J-pouch got very inflamed and we had to try medications again. We had to divert that J-pouch and give me an ostomy bag again. And then we finally just removed the J-pouch because there were many fistulas that had developed into my lady parts. So those are sort of the differences between UC and Crohn’s disease. And I now currently live with a permanent ostomy bag for many years.

Ariel: Man, that really is a very winding journey. First, thank you for going into that detail and explaining it to people because I still think there’s a lot of general misunderstanding about IBD, its differences from IBS even, there’s so much there.

Tina: Oh, absolutely. And that’s a really good point. So, if we wanna talk about IBD and IBS, IBS is irritable bowel syndrome, and a lot of people will take that irritable and put it in IBD and make it irritable bowel disease, but it’s actually inflammatory bowel disease. And that’s actually the key difference. Inflammatory bowel disease causes inflammation, ulceration throughout the tract that’s visible on colonoscopy.

Irritable bowel syndrome while still serious is a condition that can cause diarrhea, constipation go back and forth, be managed by diet lifestyle, some medications to relieve constipation, or too much diarrhea. It’s really more of a condition that requires a lot of management with diet lifestyle, whereas inflammatory bowel disease requires pretty advanced therapies and surgery in advanced cases.

Ariel: You had mentioned in addition to IBD, you have several other chronic illnesses. Is this common? How has having this slew of illnesses affected your everyday life and just the levels of inflammation in your body?

Tina: This is such a good question. My thing is, you know, I was primarily diagnosed with IBD. And what happens is that there’s often other diseases that could be lurking that don’t get looked at because the patient’s so busy dealing with IBD, right? And everything is sort of labeled as, okay, this is because you have IBD, but the reality is all of these conditions also require a lot of management.

So I’ve been diagnosed with a whole host of conditions. I have gastroparesis, which is a digestive disease as well, which slows down the transit through the stomach. And this does make my life miserable, gives me a lot of constipation, has led to IBS symptoms and even SIBO, which is small intestinal bacterial overgrowth. I have a disease called autoimmune hepatitis, which also falls into the autoimmune spectrum under Crohn’s, which affects my liver.

I also have a condition known as Sjogren’s syndrome, which causes a lot of dry skin, dry eye, dry mouth, but also something that’s not talked about because the taboo aspect is the extreme vaginal dryness and pain and stinging that it can cause. So these are a lot of the autoimmune conditions I have. The conditions that are sort of secondary to the Crohn’s and this is something people often don’t realize is Crohn’s is not just a bathroom disease. It’s not just you’re pooping blood. And I’m not, you know, trying to minimize by saying just, it is a lot more than that.

It comes with eye inflammation and complications. It can come with joint inflammation and complications. I have arthritis all over my body, especially when my Crohn’s is acting up. My eyes act up when my Crohn’s is acting up. They act up otherwise sometimes, too, with allergies and stuff. But I also have multiple skin diseases that act up that basically on your outer skin are showing, look, there’s ulceration that’s going on inside your body because your skin will start to ulcerate or become necrotic with conditions like erythema nodosum, pyoderma gangrenosum, Sweet’s syndrome, hidradenitis suppurativa.

I’ve had all of these sort of when my Crohn’s is really bad, it’s an indication, look, things are going on inside. You need to get a handle on this. So I’ve had a lot of skin, joint, and eye manifestations of this disease. I also live with asthma, migraines, pelvic floor dysfunction that really comes out of the Crohn’s disease and all the surgeries that I’ve had. I have a lot of pelvic and abdominal pain that I live with. Chronic pain that I’m also managing without narcotics, I’m proud to say. Like, I go to pelvic floor physical therapy. I go to acupuncture.

I’m trying to do whatever I can to not have to take painkillers on a regular basis. So there’s a lot of conditions here that I’m dealing with. And it often feels like I’m a full-time patient sort of coordinating between doctors and coordinating my care. Can I take this medication? Can I not take this medication? What’s good for me diet-wise? How do we manage my diet given my ostomy and, you know, to slow down the gastroparesis? These are all challenges.

And, you know, I get labeled as a complex patient all the time and it’s fine, but I truly like my blog, own my Crohn’s. I truly try to own every condition that I have and try to make the most of my life in spite of having these conditions. Yes, it’s been disabling. It’s been extremely debilitating. Yes, I’ve had to give up a career on Wall Street living with these conditions. So, honestly, in terms of perspective, I’ve learned a lot over the last 16 years of being chronically ill. And I don’t think I would be who I am today if I didn’t have the perspective of having disabilities and chronic illnesses.

Ariel: Wow. Thank you so much for sharing all of that and going into detail and speaking up about the things that people are scared to speak up about because I feel like that’s how so many things either are left untreated or people remain uneducated just because of some sort of stigma when really there are so many people going through so many of the same things.

Tina: Yes, exactly. I think it’s very, very important to speak up about these conditions. And I’m not gonna lie to you, Ariel, when I first started speaking up, it was very challenging because a lot of people were like, “What are you talking about? Are you talking about bowels.” I’m like, “Someone’s gotta do it.” And you know what, as a woman, that’s hard enough. And I know we’re gonna talk about cultural implications, as you mentioned earlier, but as a woman of South Asian descent, it’s like a whole other layer of challenges and stigmas. It was social suicide for me. I’m not gonna lie.

Ariel: Yes, absolutely. And let’s dive in because I’m also extremely passionate about advocacy and addressing racial disparities in this space. And I’d love to hear more about the work that you’re doing with the South Asian IBD Alliance and any other sort of perspective on your advocacy work or anything else that you’d like to share with our listeners.

Tina: Absolutely. So I definitely want to dive in and share more about how I got started. So I’ll be very honest. From the very beginning in 2014, I was seeing some voices speak about IBD on Twitter, on Facebook, Instagram, and I was sort of on the sidelines. I was like, I relate to the symptoms and this and that, but when it comes to diet, when it comes to culture, none of this is really, you know, speaking to me.

And I remember saying to my husband, I’ve had so much experience with this disease, I wanna do this work. Like, I wanna help people. But, you know, this would mean that we would be out in the open and a lot of people don’t know I have this condition. And he was like, “Tina, no, no. This is not what we do in our culture.” And I was like, “Yeah, I know.” And he’s like, “As it’s been very challenging for my family to accept you as my wife’s given your disabilities, that’s a thing also.”

If I can be very honest with you, Ariel, in traditional sort of South Asian culture, arranged marriage is sort of our paradigm. And that’s what we work off of. And arranged marriage is based on fitness. Fitness to be a good wife or husband, fitness to bring food onto the table, either cook it or bring the finances to bring it home, and then to bear children. And to bear children, where does disability fall into that equation? Nowhere.

So, according to traditional marriage paradigm, this was very sort of rebellious and new age for my husband to even marry someone like me, for me to even come out and talk about it. Oh my God, what are you thinking was sort of the reaction. But over the next couple of years, we both started easing into the idea of it. And in 2016, I wrote a couple of articles that were published anonymously and they did really well.

And I kept sort of volunteering on a local level in New York with the Crohn’s & Colitis Foundation running support groups and things like that, but never really being out on a national or international scale. And the Crohn’s & Colitis Foundation really did wanna see me do more because of the story that I had and because of the cultural aspects and thinking that I could really help people. I remember they named me their honored hero in New York for 2018. And they asked me to give a speech on stage in front of 700 to 800 people at their annual walk in May of 2018.

Before that, they released my story on social media. And I remember getting lots of messages and calls from publishers asking me to write for them and to share my story and speak and all this. And that’s how my blog was born. That’s how “Own Your Crohn’s” came about. And I think at that point I was just like, “All right, I think it’s too late to go back under the covers.”

And for me, like I was saying earlier, it was social suicide in a lot of ways because I didn’t feel like a lot of people from my community reached out, meaning, you know, the South Asian community, extended family, and various friends saying, we didn’t even know like you had such a serious condition. We thought it was a minor stomach ailment. And it’s just so taboo to talk about that. We don’t reveal how expensive it is. They might think it’s like an ulcer, stomach ulcer or GERD or something like that.

Not minimizing either of those two, but they tend to think it’s like that rather than a major chronic illness and what does that mean? So it was a little bit…they might think it’s like an ulcer, stomach ulcer, or GERD or something like that. Not minimizing either of those two, but they tend to think it’s like that rather than a major chronic illness and what does that mean?

So it was a little bit difficult at that time, not gonna lie because a lot of people sort of turned their back and said, “You know what? Tina, this is too much for us. I don’t think we can follow this or be a part of this.” But then there were a lot of people who stuck around, too, and said, this is amazing. You need to keep this work up. Somebody needs to talk about this and shatter these stigmas.

And not just for IBD, it’s relevant for other conditions, too, whether that’s mental health, whether that’s women’s rights. So many other aspects of society could benefit from this. So there was a lot of support, but there was also a lot of people saying this is too much for me to handle. And I understood it from the perspective of someone from that culture. I got it, but it was hurtful at times, but I just kept moving forward honestly.

Went from writing to speaking engagements, to being invited to conferences. And at some point, I was just like, this isn’t just about me. Clearly, I’m hitting a cord. There’s a lot of South Asian patients messaging me, not just from the United States, but even from abroad all over South Asia. So let’s talk about South Asia a little bit. South Asia consists of eight countries.

That’s India, Pakistan, Bangladesh, Sri Lanka, Nepal, Bhutan, Afghanistan, and Maldives on the island off the coast of India. I will just say there’s multiple countries here. And India is right behind the U.S. in numbers of inflammatory bowel disease patients. India on its own. That doesn’t even include the people who go undiagnosed being in villages, or due to stigma don’t go and see the doctor. That does not include the other seven countries. That does not include our diaspora, which is massive in the UK, U.S., Canada, and Australia, and other parts of the world.

So what are numbers looking like? South Asians are 25% of the world, yet IBD is exploding and it’s completely unexplored territory. We are just starting to hit the tip of the iceberg by talking about the cultural stigmas, the taboos. And I haven’t even gotten into that part yet. You know what I went through in terms of taboos and stigmas with my own journey that led me to do this work.

There are so many barriers to care in our community and we are such a large chunk of the world, yet this is being unaddressed. I didn’t respond to many medications. That’s why I had so many surgeries. I had complication after complication and needed surgery after surgery. And I had three near-death experiences with Crohn’s. One of the reasons for that was the tremendous pushback against biologics or advanced therapies for Crohn’s disease and ulcerative colitis, which were considered very taboo and still are in our culture.

They’re considered taboo even in American culture. Honestly, lots of people are scared to go on biologics because they’re looking at the side effect profile, which, you know, there’s a 1% risk of lymphoma or something like that, which doesn’t even hit most people. And when you look at the quality of life the drug gives you versus the side effects list, I don’t even know if I’ve really experienced many, if any, side effects on my most recent biologic that I’ve been on for the last seven years.

And that’s the reality, yet we are delaying our care looking at the side effects because of the mistrust that we have with Western medicine because we tend to believe in CAM, complementary and alternative medicine. We tend to focus on Ayurveda. We tend to focus on homeopathy. We’ll tend to focus even on Chinese medicine or naturopathy, anything to avoid Western medicine. But what people don’t realize is there are side effects with anything and everything that you do and things should be controlled and monitored by a physician.

And I went through this, Ariel. Early on in my journey, I’ve had a lot of pushback from my family to go on a biologic. They’re like, “You’re 24 years old. Are you gonna be on this thing for the rest of your life? What kind of side effects will this have?” There was so much concern that I delayed my hair and I dropped from 135 pounds to 85 pounds. Mind you, I’m 5’6, I was being fed by tubes. The hair on my head was graying. And I was led into emergency surgery.

Mind you, that surgery was also delayed because there is so much stigma against ostomies in South Asian culture. The stigma is there in American society, but then when you go to South Asian society, you’re not getting married, you’re not getting a job. I know people in India who get spit on for having an ostomy. It is considered dirty and disgusting. Meanwhile, my ostomy gave me my life back. Why is this thing considered disgusting? It doesn’t smell. It’s just attached to my abdomen with a small portion of my intestine coming out.

And I change my bag every three or four days. I empty it every few hours. It’s not the end of the world. I’m not living in constant pain going through my rectum. This thing has given me my life back. I can travel. I can use the bathroom wherever I need to. Honestly, I can empty in the woods if I’m going hiking. This has given me so much more quality of life rather than sitting on the toilet 30 or 40 times a day bleeding and screaming in pain. And here we are not going for surgery because of the stigma.

So this is immense. This is a huge problem in our culture, whether it’s the advanced therapies and the mistrust towards medications, or its stigma towards ostomy surgery. This sort of coupled with the idea that this is a diet disease, that we did this to ourselves, that we should be ashamed for eating poorly or drinking too much or whatever we might have done to have deserved this disease.

But I want to question that today because how many of us eat at McDonald’s? How many of us drink in college? Everybody does. Why do some of us only get this disease and why shame for that reason when so many of us have clean diets and still end up with this disease? So the purpose of my work is really to destigmatize this disease, help people talk about it, empower them, and also rebuild and regain their self-confidence because that’s something that’s lost with having a bowel disease, yes, but also the shame and blame that society puts on us is something that really, I think, knocks us down several notches.

And my purpose as a patient advocate is to change the rhetoric around that. So as a patient advocate within my blog “Own Your Crohn’s” and my social media advocacy platforms also known as Own Your Crohn’s, that’s been really my purpose and focus for the last four years. However, in the last year, I’d say about 15 months, I started a Facebook community with a few women from around the world. One is in India, one’s in the UK, the other one’s in Portugal, all of South Asian descent. And we started a Facebook community called IBD Desi.

IBD plus Desi, so Desi means of the mainland, means South Asian, basically. So South Asian IBD is what our group is named. And we have over 1,100 members right now in our group from around the world of South Asian descent. We have a few Middle Eastern folks, a few far East Asian folks who feel like they can identify with our stigmas and our culture a bit more than they might with other communities.

So we talk about all of this, we support one another, and those women and I came together then and said, you know what? We need an external advocacy platform. We can’t just keep this behind the curtain in a closed Facebook forum. So we started advocating, we started empowering others to share. We exploded in the very first few months. And so we decided to approach a bunch of doctors of South Asian descent, and by doctors, I mean IBD specialists, but also colorectal surgeons.

And we also invited multidisciplinary providers like dieticians, psychologists, as well as IBD nurses because really IBD does need that gamut of care in terms of diet and mental health as well. So we invited these providers from all over the world of South Asian descent to join hands with us. And that’s how South Asian IBD Alliance was born. IBD Desi is the patient advocacy arm now, SAIA it’s called, South Asian IBD Alliance. And we are in the process of becoming a 501(c)(3) registered organization in the United States.

But in the process, we are working on, one, patient education, two, professional education and development via the physicians, and, three, research. So research that is specific to South Asian phenotypes of disease and understanding of what incidence is going up so rapidly and to understand why there’s more severe cases in the South Asian community. Is it because of delayed cares, or is it because of the actual phenotype type of disease?

So we’re doing a lot of work to set up at the moment. We’ve already started patient-professional development type educational work, and we are working on research projects at the moment.

Ariel: Tina, I am just almost speechless in awe of all this incredible important work that you are doing and how you are approaching it from every angle, from the physician education angle, from the patient education angle, and just applauding you and thanking you for your bravery, your persistence, your determination to really break down these stigmas and these walls because I’m not of South Asian descent, I’m of East Asian descent, I’m black as well, and we have our own set of cultural stigmas around a lot of these things.

But just the benefit anecdotally and the research that shows the benefits of patients and people being able to interact with a physician who looks like them and understands their culture in this way, or even other people is just so vast how important that is. So just thank you so much for all of this work that you are doing in this space.

Tina: Of course, it is my pleasure. It is my honor, but I also feel like it’s my duty. If I’m out with this disease, that’s already half the battle. So now it’s my job I feel to help others feel comfortable joining me in doing this work and working together as patients and as clinicians to really start minimizing the disparities. We have to work together and collaborate.

Ariel: Absolutely. This is truly a team effort if we’re going to make the changes that need to be made. I want to make sure because you…and everyone, as you know, I’m always going to list all of these great resources that Tina’s mentioning in the show notes below. So be sure to scroll down, I’ll be linking to her website, her social media, the communities that she’s mentioning, all of that good stuff.

But I wanted to take a point too to share…so you can share any other organizations and resources that you think will be beneficial for people. I met and interviewed Susan Burns from the United Ostomy Associations of America recently. She’s amazing. I just want you to be able to share organizations like that one and any others that might be helpful for our listeners.

Tina: Absolutely. So, United Associations of America, a wonderful organization, I’ve worked with them heavily. I alone sort of worked separately with them on a project, a grant from the Helmsley Charitable Trust. And we developed a whole bunch of ostomy content, including pregnancy with an ostomy content. So they have some fantastic content on their website that I can personally vouch for that’s medically reviewed to consider an ostomy, consider ostomy surgery, living with Crohn’s disease or ulcerative colitis.

The Crohn’s & Colitis Foundation is doing some excellent work in terms of medication access, insurance, prior authorizations. They’re doing a lot of work in that space. They’re also doing a lot of work in terms of research for our community and in empowering voices like mine to continue to do the work that I am. And the Crohn’s & Colitis Foundation also has this excellent app that, you know, I was a part of with regards to finding a bathroom. It’s called the We Can’t Wait app.

If you are around the United States, you can actually download this app and find a restroom wherever you might be traveling, or if you’re out and about with your friends, it will actually point you to the nearest restroom that you can use. And this is helpful not just for Crohn’s disease and ulcerative colitis, it’s really for anyone who may have to go to the bathroom. So I use this app a lot and I definitely wanted to share that as a resource as well.

There’s been a number of organizations that have been trying to tackle diversity in clinical trials, but also consider marginalized populations. Girls With Guts is an excellent organization putting out very credible resources. And while they focus on women with IBD and ostomies, they also help to represent the LGBTQ community with respect to IBD.

And I want to be very appreciative of the work that they do because there are many intersections involved there, and many challenges related to hormone therapies and different kinds of treatments of the LGBTQ population also needs their own form of cultural competency on. So they’re doing some excellent work as well.

I think for IBD, specifically, some of the Crohn’s and colitis like international-type organizations like Crohn’s & Colitis UK and Australia are doing some excellent work in making sure that they’re empowering voices, but also propelling research forward. I’ve been working with a couple of these organizations on international projects, but also I think that there’s an organization called Guts UK also working on advancing digestive disease knowledge.

All of these organizations have a lot of credible information to learn about this disease, make your best decisions. To hear patient voices even on their website and social media pages, I think is very, very important. And, of course, on our SAIA, South Asian IBD is the handle on Twitter, Facebook, and Instagram, we have a lot of content and we also have a lot of content on our IBDesis page, that’s IBDesis on Twitter, Facebook, and Instagram as well. And we are working to share stories from around the world of South Asians.

And even for Asian Heritage Month, this month, we are showcasing a few people from outside of South Asia of Asian heritage who otherwise may not be able to feel empowered enough to share their story and their voice. So I think it’s very important to get these perspectives. You’re also welcome to join our group on Facebook. It’s a closed community. I don’t wanna just say it’s just for South Asians. If you would like to join, you’re most welcome. It’s called IBDesis community as well.

Ariel: This is excellent. Everybody, please, I’m going to list as many of these as I can in the show notes down below. So many excellent resources. Thank you, Tina, so much. Is there any other final parting thoughts that you’d like to share with our listeners today?

Tina: Absolutely. I would just like to share that this disease can be very scary. It can feel like the end of the rope when you’re very young. I’ve been there. I was 22 and on Wall Street and I felt like, “Oh my God, what is happening to my body? I have no control over my bowels all of a sudden.” It’s a very scary feeling. But I just want to say to everybody that’s listening, there is hope. There are medications. There are surgeries. At the age of 38, I feel more brand new than ever. Even though I’ve had so many surgeries, you can live your life. You can achieve your dreams with this disease.

You just need to take ownership, find the right medication, navigate the healthcare system, lean on your family and friends for support. And don’t feel like you have to keep quiet about this disease. Of course, that is a personal decision, but know that there are people who are going to support you if you want to talk about this disease. Don’t ever feel like you’re alone with this disease. There’s a whole community on social media willing to help you and willing to support you through this journey. Thank you so much for listening and for being a part of this conversation.

Ariel: Tina, thank you so much for being here and for that beautifully encouraging note to end on. Everybody, like I always say at the end of the podcast, we all have colons or had one at one point, so ask your questions, do your research, and have a conversation. We’ll see you next time on the “Colon Health Podcast.” Bye.