Meet a Girl With Guts: Tina
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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