Meet a Girl With Guts: Tina

Hi, my name is Tina Aswani-Omprakash I have Crohn's disease I’ve had Crohn's for nearly 15 years now And I have a permanent ileostomy that I've had for nearly nine years I was originally diagnosed with ulcerative colitis But my diagnosis was changed five years in after I had already had a j-pouch done because I had several fistulas develop So I've had a number of surgeries — over 20 — in a 7 year period and for the last five years I've been in and out of remission I was started in a clinical trial at the time for Stelara or ustekinumab And since then I’ve generally done a lot better, and not needed nearly as much surgery That said, I've accumulated a lot of diagnoses over the years as well So I have a lot of digestive ailments, but I also have secondary sort of autoimmune conditions I do a lot of advocacy work I’m also studying for my Master’s in Public Health at Mount Sinai School of Medicine One of the areas that I tend to focus a lot on in my my advocacy work is my experiences that, you know, I don't think is talked about enough when living with Inflammatory bowel disease or an ostomy And I think that's the minority experience And I just want to highlight that I think that every racial and ethnic minority goes through different things I've spoken to many Black people, Latinx people, people of Middle Eastern or Asian descent And I've heard all sorts of different stories But one of the things that plagues my community, and plagues me especially, and that I hear a lot around the world is the stigma. Now in American culture, we have a lot of stigma towards irritable bowel disease or an ostomy, but I think we've made a lot of strides towards normalizing the talk around ostomies especially in the last couple of years with everybody starting to come out on social media, sharing their photos or talking about life with an ostomy, life with Crohn's or ulcerative colitis But for patients like myself of South Asian background, it can be very, very difficult to open up In my culture, this is considered taboo to have any kind of chronic illness at a young age, we don't talk about it You know, at a young age we're mostly focusing on our studies, on our careers, you know, marriage, all those kinds of things and to have a chronic illness sort of come into the picture usually means we can't fulfill the kinds of dreams that we want, may want to in our lives And I think talking about it exacerbates that experience So we are usually asked and I was asked many times not to disclose how serious my condition was Mind you, this disease does run in my family So I felt like, why can't I share this? Won’t people understand it? My father died from Crohn's Disease that turned into colorectal cancer when I was eight and a half His sister died just a few years later, and they had an aunt back in Karachi, Pakistan who bled to death who they believe probably had the same condition back in the 1940s So clearly there is some family history there and just not having anybody to talk to about this in my family, even though they knew what it was, felt like I was an outsider or that I was being shunned in so many ways And I think that's from when I've spoken to others about this that seems to be a similar experience Because it's so invisible to the rest of the world it's like ‘okay, you can carry on you're just tired’ or ‘you’ve just lost a few pounds...it’s not the end of the world’ ‘You can still work, you can still study’ All those things, and they expect us to still continue to lead normal lives even though we're really struggling on the inside So, one of the reasons why I came forward as an advocate, even though I knew it might be social suicide for me, and it was, not gonna lie was because I wanted to change the rhetoric around these kinds of things I've always believed that we have to embody the change that we want to see in the world And so I thought, you know, either I can live suffering in silence or I can do something about it My experiences with this disease have been so multi-factorial in the sense that I’ve really experienced a lot of different nuances with it So I think this just adds layers of taboo to my story It's just not a simple cut and dry case of Crohn’s that's been controlled by medication There's a lot of stigma towards medication in my culture as well So you might see a lot of doctors from my background, but regardless of that, you know, to actually get yourself to take medication for a bowel disease, when a lot of your culture is telling you, ‘Oh Tina, this is diet-related’ Or ‘you can treat this with alternative medicine To get that kind of feedback, makes you feel like a failure when you actually do need medication Another thing that was a huge struggle of mine was getting the ostomy I was begging for it I was 24 years old and my mom was like, ‘Oh hell, no.’ And I was like, why not? And she was just like ‘your father hated it, Tina I can’t see you go through that too' And I’m like, I’m dying. I’m 85 pounds. I got this PICC line in my arm feeding me I have my hair graying. Like, I'm completely malnourished It got so bad between me and her at that point that my now husband and a friend of mine came from New York City to my mom's house, to pick me up for emergency surgery to have the ostomy, to have my colectomy done And I felt like when I woke up I was like thank God I had this done You know, and people told me left and right that no one is going to marry you with an ostomy The man who took me to the hospital is the man who married me And these are the kinds of stories we hear, and when I interface and interact with patients abroad, these are the same stories I hear ‘I have to hide my illness because no one is going to marry me.’ ‘I can’t get an ostomy, I have to figure out any which way to deal with this fistula and these setons’ and you know ‘to figure out some way to stay on biologics even though they're unaffordable for me’ Just to avoid an ostomy It's just to any extreme many cultures will go to just to avoid the ostomy It’s actually given me so much life back, that I couldn't have imagined my life any other way now It's part of who I am These stigmas, cultural or otherwise. They exist because there's fear and because there's lack of knowledge So that's kind of one of the reasons why I advocate It’s because I want to destigmatize I want to get rid of these stigmas and taboos around, and, culturally speaking, around so many of these aspects of illness because people will fear what they don't know and what they don't understand So I think in order to arm people with the knowledge and understanding, we have to empower first by sharing our own personal stories and by showing that, you know, if I can do it you can too And that's kind of how I became an advocate, and why I continue to do the work that I do