fbpx
two women smiling with a purple background
Podcast

Tina’s Voice: Raising Awareness and Overcoming Stigmas with IBD and Inflammatory Arthritis

1 week ago
36 min read
Add comment
FacebookXRedditPinterestEmail

Listen Now:

Watch Now:

Summary:

In Episode 156 of This Arthritis Life Podcast, Tina shares her personal journey with Crohn’s disease (a form of inflammatory bowel disease), Sjorgen’s, and inflammatory arthritis. She explores the significant cultural stigmas surrounding chronic illnesses, modern medicine, and surgeries like ostomies within South Asian and other communities of color. She reflects on the challenges of navigating family dynamics and cultural expectations, which delayed her use of medications and other treatments that ultimately improved her quality of life. 

Cheryl and Tina emphasize the need for increased education, representation, and awareness about autoimmune conditions and treatment options to reduce stigma and support patients globally. 

Cheryl and Tina also discuss Tina’s advocacy work, including her blog Own Your Crohn’s and contributions to South Asian IBD Alliance (SAIA), focused on creating community and amplifying patient voices across diverse populations.

Episode at a glance:

  • Tina’s Diagnosis and Journey: Initial struggles with chronic illness and delayed acceptance of modern treatments like ostomies; challenges navigating cultural stigmas and family expectations in South Asian and other communities of color.
  • Addressing Stigma and Cultural Barriers: The impact of cultural stigmas on seeking timely medical care; Advocating for education, awareness, and representation in autoimmune and chronic illness spaces.
  • Advocacy Work: Founding Own Your Crohn’s to share her experiences and connect with others; Contributions to SAIA to amplify patient voices and support global IBD communities.
  • Key Messages: The importance of community, education, and acceptance in improving quality of life for patients; Breaking barriers and promoting inclusivity in chronic illness narratives.

Medical disclaimer: 

All content found on Arthritis Life public channels was created for generalized informational purposes only. The content is not intended to be a substitute for professional medical advice, diagnosis, or treatment.

Episode Sponsors

Rheum to THRIVE, an online course and support program Cheryl created to help people with rheumatic disease go from overwhelmed, confused and alone to confident, supported and connected. See all the details and join the program or waitlist now! 

Speaker Bios:

Tina Aswani-Omprakash, MPH, is a multi award-winning women’s health advocate based out of New York City. Tina pivoted from Wall Street to a path of impactful change in healthcare after her own Crohn’s disease diagnosis and life-saving ostomy surgery.  Due to the stigmas and disparities she faced in her own journey, she started a blog and social media advocacy platform called Own Your Crohn’s, which brought to light cultural determinants related to GI care and access and went viral across patient communities. Her pathbreaking advocacy brought together multiple patient advocates and clinicians, eventually leading to the formation of South Asian IBD Alliance (SAIA), a patient-clinician led non-profit organization working to improve education and awareness in the growing South Asian IBD community.

Cheryl Crow

Cheryl is an occupational therapist who has lived with rheumatoid arthritis for nineteen years. Her life passion is helping others with rheumatoid arthritis figure out how to live a full life despite arthritis, by developing tools to navigate physical, emotional and social challenges. She formed the educational company Arthritis Life in 2019 after seeing a huge need for more engaging, accessible, and (dare I say) FUN patient education and self-management resources.

Episode links:

Full Episode Transcript:

[00:00:00] Cheryl: 

I’m so excited today to have Tina Aswani-Omprakash. And she is somebody who had, I have met through the Patient Advocacy Network and actually got to meet in person before recording this, which is rare for this podcast. Usually it’s people I’ve never met. So, anyway, welcome to the Arthritis Life podcast!

[00:00:20] Tina: 

Thank you so much for having me, Cheryl. It’s such a pleasure and honor. I’m so glad we got to meet at Healthy Voices this year. I’ve admired your work for a long time, so thanks for having me on today. 

[00:00:32] Cheryl: 

Oh, my gosh. No, same, right back at you, and I just, I’m actually, I’m like, I feel like I should have earlier — I shouldn’t should myself — but I really think that covering, it’s so important to cover the intersection of inflammatory bowel disease and arthritis. A lot of people don’t know that they overlap, so we’re going to talk about that. But first, where do you live and what is your relationship to arthritis? 

[00:00:57] Tina: 

Sounds good. I’m Tina Aswani-Omprakash. I live in New York city in Manhattan. And as you said, I have inflammatory bowel disease. I’ve also had inflammatory arthritis on and off for many years. And I’m excited to talk to you all a little bit about that. I feel like it’s a topic we don’t talk about enough, so I’m really excited, Cheryl, that you’re covering that and bringing light to that because a lot of the community doesn’t realize how these different kinds of manifestations are connected to one another.

[00:01:31] Cheryl: 

Yeah, exactly. Well, so without further ado, please feel free to share whatever you would like about your diagnosis story/saga for Crohn’s, and then how that led to inflammatory arthritis 

[00:01:45] Tina: 

So, I have a really long Crohn’s journey that’s quite windy and convoluted, so I will spare the community. I’ve talked about it plenty. But I will share that, you know, it’s been a really, really rough journey. And I think what, I noticed since childhood is that I’ve had arthritis. I’ve had knee pain, ankle pain. And it was sort of dismissed as, “Oh, she’s just growing.” I’ve even had wrist pain and finger pain, like small joint pain. And it’s always been dismissed as she’s growing. She’s growing. She’s going through puberty and whatnot. As an, as an 8, 9, 10, 11, 12-years-old. And I just feel like it was so much more than that. I know it was because concurrently I was having, like, eye symptoms which are also connected to IBD and I was having derm manifestations to which are also connected to IBD as well like skin lesions and stuff. So, I know there was something brewing. 

I wasn’t actually diagnosed till I was 22. And I was diagnosed with ulcerative colitis, which was actually Crohn’s disease. So, ulcerative colitis hits in your colon and rectum, whereas Crohn’s disease is from your mouth to your anus. So, it’s the entire digestive tract. And the little known fact about IBD is just, it’s not just a bowel disease. It’s really a whole-body disease and it can affect so many aspects of your life and your wellbeing. I’ve had over 20 surgeries due to the Crohn’s itself. Of course, other surgeries for sinus and dental issues, but that’s separate. And I just feel In my journey, arthritis has been woven in throughout and has been quite debilitating, Cheryl. Like, what’s happened to me is, yes, of course, before my diagnosis, I was having joint pain, and pretty significant joint pain. I wouldn’t say it’s it’s just a little bit of an ankle ache or a little bit of a knee ache. It was like hard to get out of bed. So, it only got worse as my Crohn’s journey progressed. When I got a diagnosis, I think when my disease started to worsen, every single time I would flare, it would be preceded by really bad ankle pain, really bad knee pain, to the point where I had to go and get steroid injections. 

And I’m sure you’re really familiar with this as an arthritis patient leader is just getting those steroid shots also puts you at risk for other sort of issues. And so, every time I was getting those steroid shots, I was like, gosh. These help, but am I sacrificing my bone density or something else in the process? So, it was really challenging. I did want to share, Cheryl, one of the worst points of my journey was 2014, 2015 and proceeding then and starting in 2013, I started developing like fistulizing disease, which are these tunnels from your intestine into other parts of your body. So, your intestine like breaks through because the inflammation is so severe and it can cause sepsis. Fistulas were breaking into my lady parts, into my bottom, causing a lot of leakage, sepsis, all kinds of stuff.

Preceding this — this is like the most severe complication of Crohn’s — preceding this, what was happening was I had the worst joint pain I’ve ever had in my life. And like from my back, to my hips, to like sciatica on top of all of this. Of course, sciatica is a little bit different. It’s neurological. My ankles, my knees, my elbows, my wrists, even my neck, the back of it, even just to move it like this. I could not, I literally could not get out of bed. My mom was taking care of me during this time and she was taking me for like Ayurvedic massages. Like, it was so expensive, too. And it would help; it would help for a day or two and then it would come right back. And I was just like, what is happening to me, doc? Like, what is going on? Why is my whole body feeling like it’s just going to crack? 

And I don’t mean to make light of this. It was really a horrific time because not only was I dealing with these fistulas and just so many Crohn’s symptoms and I had all these derm skin lesions and stuff like that going on too that were acting up, the arthritis was like disabling on so many levels. And you can get steroid shots in every part of your body. Yes, you can take prednisone, but even that wasn’t helping. So, you know, what they did is they restarted me on biologics, which I know you use for arthritis as well. And one of the biologics I had anaphylactic shock to; it was so bad. And, it was just hard to find a treatment for my Chron’s, and then the skin stuff, and the joint stuff at the same time. 

And I found that one of the biologics helped my joint stuff, but my bowel and derm stuff still continued. And then, one of the biologics was, like, just gut specific. So, it started to help a little bit in the gut, but didn’t do anything for the fistulas, and didn’t do a thing for the joints, and certainly didn’t do a thing for the skin lesions. So, it was a very, I feel like you’re just kind of like playing like Whack-A-Mole, like, okay, which symptoms can we like knock out? 

[00:07:53] Cheryl: 

A hundred percent. I’ve used that exact analogy. It relates perfectly, I think. I’m so sorry.

[00:08:00] Tina: 

It’s so hard, and I know you get it. And so, I just want to emphasize that, like when, you’re having like even IBD or when you might have arthritis or when you might have some of these skin conditions or just autoimmune conditions in general, often they come with other conditions, and they sort of overlap. And it’s not just in your head. It’s important for us to make sure we tell our doctors that. And I had to scramble to find a rheumatologist and an orthopedist who could give me those steroid injections and manage some of these rheumatological symptoms. 

So, it’s important to coordinate your care in a way that if you’re seeing a GI already, you may need to get a rheum, you may need to get a dermatologist, or if you have arthritis and you’re starting to have bowel symptoms, it’s important to talk to your doctor about, hey, do I need a GI involved here? So, a lot of these things are overlapping. I was even tested for ankylosing spondylitis for the HLA-B whatever stuff. And, just to make sure that wasn’t happening. ‘Cause that’s also core comorbid with IBD. So, it’s been a really tough journey, but I think it’s really important to highlight that there’s a lot of overlapping diagnoses and symptoms. 

[00:09:28] Cheryl: 

Yes. And one thing that is kind of a parallel is that, like, just like we say with rheumatoid arthritis, it’s not just joint pain. It’s a whole-body systemic issue. Inflammatory bowel disease, like Crohn’s, it’s not just a GI issue. It’s a whole-body issue. And it’s thought to be autoimmune. And so, these, you know, your own your own immune system is attacking these previously healthy tissues in your gut and everywhere else. And I just — oh, for the audience, I just want to make sure, because we don’t talk about GI stuff a ton here. I mean, I have gastroparesis, but no one knows why I have that, it’s just kind of random out of nowhere. But maybe, yeah, maybe it’s related, I don’t know. I got diagnosed with both in the same year with RA, but mine’s very, fortunately, it’s very much like flares and remits. Like, it doesn’t, it’s not constant. 

[00:10:21] Tina: 

We need to talk about the GP at some point. 

[00:10:23] Cheryl: 

Yeah. Oh, yeah, well I just want to get a vagus nerve stimulator at this point because it supposedly works with both GI motility nd RA. I’m like two for one, just like we’re talking about.

[00:10:37] Tina: 

But there’s studies going on and it’s going on for IBD, too, at the same time for vagus nerve stimulation. So, it’s a great point. Gastroparesis is definitely linked to all of this. I, mine’s idiopathic, but yeah, I, yeah.

[00:10:51] Cheryl: 

It just means we don’t know what it is or why it’s there, but I want to make sure the audience knows IBS, irritable bowel syndrome, is completely different than when we say IBD, irritable bowel disease. IBS is much more mild, that’s like when have some constipation or diarrhea, randomly, right. And you might have some reflux, but IBD is — and no one knows why you have it — it’s like just syndrome, it’s like kind of, you have these symptoms, we don’t know why they’re there. Whereas with IBD, it is autoimmune. Is that correct? That’s my understanding. 

[00:11:26] Tina:

Yeah. that’s correct. So, irritable bowel syndrome, IBS, I do have that as well. The constipation kind of IBS. And it was kind — oh, God, I just keep adding the diagnosis, right? Yeah. so I actually think I’ve had that since childhood. I think that’s how my symptoms started was with IBS/D. What they say nowadays, and IBS could be completely not linked to IBD, but in some patients, it’s overlapping. And it could be a spectrum, right? Like, even if your IBD is well controlled, your IBS could be freaking out, which is usually the case for me, and it’s hard to tell between the symptoms. 

So, IBS is a syndrome. I don’t want to downplay it. It is debilitating of its own right. It is something that is often managed with diet, stress management, but also with medications as well. And, you know, breathing exercises, yoga, lots of different things people do, even pelvic floor physical therapy to help manage it. I do a lot of this stuff, too, to help manage mine. IBD, inflammatory bowel disease, is immune mediated, just like you were saying, Cheryl. So, it’s considered an autoimmune condition where your own body is sort of attacking the gut. And along with the gut, it’s often attacking other things like the joints and your skin. So, and your eyes and a whole bunch of other stuff that could be going on. 

And in my case, I have like oral health problems because of it, too. And I have Sjögren’s too, which affects my oral health. But IBD, it’s an autoimmune condition, and it’s usually something that comes with a lot of pain, a lot of abdominal cramping, bloody stools, not for everyone. Sometimes people can have pretty bad abdominal cramping, but if their disease is higher up in the intestine, they may not see the blood. But if you are seeing fresh blood, it’s usually from the rectum or from the bottom of the colon. So, there is, there is that. 

And there’s two forms of IBD and they’re considered kind of like a spectrum now. One’s ulcerative colitis. As I was explaining, that generally affects the colon, which is the large intestine and the rectum. And then, there’s Crohn’s disease, which affects you from your mouth to your bottom. And there could be inflammation, like even mouth sores, and bleeding mouth sores. I’ve had all of that. And all the way down to your bottom, you could have sores. So, and those sores are usually ulcers, and they can bleed. And sometimes those ulcers, sometimes it just gets so bad that the intestine starts to narrow. That’s called a stricture. Strictures are part of Crohn’s disease. And, sometimes, you can develop what’s called a fistula, as I was also describing. Those are like, if you get such bad inflammation, the intestine breaks and causes a tunnel into another organ or out onto your skin or into your private parts. 

It’s really, for lack of a better phrase, a nasty disease. And I don’t think there’s a lot of awareness or understanding. And, Cheryl, you’re 100% right. People often confuse IBD for IBS, and I hear it all the time. And I think both parties, IBS patients get upset when it’s called IBD, and IBD patients get upset when it’s called IBS. Because it’s like, they’re similar, but they’re so different at the same time. And, I’ll tell you the other day, my physical therapist was telling me — and I go for pelvic floor PT for a variety of reasons, and also for my Crohn’s, all the surgeries I’ve had and just how messed up my bowel is — and she was telling me, she’s I don’t think people realize how debilitating Crohn’s diseases. It’s just, she’s like, it’s up there with RA, with MS. 

Yeah, it’s up there. And I think they’re often thinking it’s IBS, and that this can be controlled with diet and lifestyle and some mild medications. And, but we need some big gun medications. And it’s, a really hard thing to accept when you think that you can fix this with diet and cutting back stress and all that. 

[00:16:12] Cheryl: 

Yeah, a hundred percent. And I’m just gonna, I’m a very visual person. So, I’m going to put in the show notes, I made a couple of charts that are kind of an amalgamation of other charts out there to explain — this one’s called ‘Types of rheumatic diseases’, which are diseases that affect the joints, tendons, muscles, ligaments, and our bones. And so, according to my sources in making these, like CDC and Creaky Joints and other Johns Hopkins medicine, the kind of arthritis that can come from IBD, Crohn’s, and ulcerative colitis is called enteropathic arthritis, which I had never even, I mean, I’ve been doing this work for a long time and I hadn’t even heard of that phrase until I was, like, going, making my course, my Rheum to THRIVE course, and it falls under the spondyloarthritis umbrella. 

But, I just think it’s really important for people, because most people who listen to this podcast, yeah, have an inflammatory arthritis, usually like RA, psoriatic arthritis, or like axial spondyloarthritis. But to know that you’re more at risk of having IBD if you have an inflammatory arthritis, and it can go the other way, right? Where you have like —

[00:17:27] Tina: 

Exactly. Yeah. It can go either way. You can be diagnosed with one and then years later be diagnosed with the other. And like, the same goes for is some someone with RA, you can be diagnosed with RA and then be diagnosed with IBD many years later. So, it happens all the time. And I also want to say sacroiliitis, that inflammation of the, your back, your lower back, joints, is very, very common in IBD. And oftentimes, they want to rule out ankylosing spondylitis because of that as well, which I know is sort of a related autoimmune condition as well. 

[00:18:10] Cheryl: 

Yeah. And one of the things that I think is so, powerful about your work is that you — you’ve done so many things, we could spend like hours talking about them — but one thing I want to talk about today with our precious time is South Asian representation in chronic illness communities and particularly GI, because there’s so much stigma. In most cultures, there’s right, like, any like poop jokes are kind of documented across cultures, or there’s like weird feelings about the GI activities. And then, anyway, I’ll hand the mic to you to, you know, share a little bit about why you think it’s important to have South Asian representation. 

[00:18:49] Tina: 

I think that’s such a great question, Cheryl, and thank you for recognizing that. So, I’m one of the co-founders of a South Asian IBD Alliance, SAIA, we call it for short, S-A-I-A, and I think this is so important to recognize how stigmatized and almost traumatic it is to receive a GI diagnosis, especially one as stigmatized as inflammatory bowel disease. One, it’s often equated with IBS, like I was saying. And because it’s equated with IBS, it’s automatically, “This is your fault. You didn’t manage your stress well. You ate garbage. You probably drank too much. And you did this to yourself.” I, for an IBS patients, that’s not a fair assessment to be making, certainly not for IBD patients. 

And I was unfortunately a victim of that. And I dealt with that. And it is a lot of shame, blame, and guilt to take on. And it’s this internalized stigma that then develops. Like, oh, my God, I did this to myself. Oh, my God, I should not talk about this. This is disgusting. And it’s foul, and it’s gross, and blah, blah. I can go on and on. And so, I went through this, and I didn’t really know too many people with this condition at the time. I knew my father had it, but my father died when I was eight-years-old, and he was only 39 at the time, and he died from Crohn’s that time, and colorectal cancer, yeah, it’s really — 

[00:20:19] Cheryl: 

Oh, my gosh, I’m so sorry. 

[00:20:21] Tina: 

And he never talked about it, like, never. Like, literally saw him lose like 80, 100 pounds, lose all the hair on his head with chemotherapy. It was awful. It’s an awful thing for a child to see. And I think it — my sister and I both knew that we’re probably going to have IBD at some point, but you don’t know until you actually get it how bad it is. And so, I saw the shame and blame and guilt that he lived with and suddenly now I had it. I’ve seen my sister live with it. I’ve seen aunts and cousins live with it. And nobody talks about it. Even until this day. They’re just like, “What are you doing, Tina? Like, how can you talk about this? It’s so gross.” Yeah, and I’m like, I don’t know any other way to not only cope, but to help other people. If I’m gonna go through this, I need to know that I can do a service to the community too. So, that’s really the reason why I started my Own Your Crohn’s blog and the reason, why SAIA also came about is because other patients were relating heavily to what I was talking about. 

And not just other patients in the South Asian community, I will tell you, like, when I first started my blog, Own Your Chron’s, it was Africans in Africa, as well as African Americans, South Americans, and Mexicans, like people all over Latin America, as well as folks in East Asia and the Middle East. I didn’t feel comfortable speaking for multiple communities of color, even though we share many stigmas across communities. Some of them can be a little bit different. The Asian and Middle Eastern stigmas are very similar. So, we are, within SAIA, we are getting a lot of outreach from the East Asian, Southeast Asian, Middle Eastern populations, because it’s very similar about maintaining your family’s respect, not disgracing your family in the process of revealing a weakness, such as having a chronic illness, and that too at a young age. 

So, that’s the other point that I wanted to sort of emphasize is, yes, this is very much an IBD, a GI problem, but it’s broader than that. I think South Asians as a whole have accepted more common conditions like diabetes and hypertension and heart disease because they’re pretty common in our community. But what has not been readily accepted is autoimmune conditions. They hit young. They can even hit when we’re kids, right? As pediatric patients, like RA, like AS, like IBD, like MS. And, I think that there needs to be a lot more work done in our community more broadly for the Asian, Middle Eastern communities because we’re 60% of the world’s population. 

I’m going to be really honest, the South Asian diaspora is 25%. I know, we’re the largest diaspora in the world. So, you know, I just want to emphasize that oftentimes, like we’re talking about clinical trials, we’re talking about under representation. But what we’re not talking about is there is this huge chunk of the world that’s being left out of a lot of trials and the reason why we don’t go into trials is not even understood. Like, there is, Cheryl, and I do need to emphasize this point, there is a history of colonization of Asian and Middle Eastern countries, whether it dates back to the British empire or other empires, and there’s a lot of mistrust towards Western therapies. And by Western therapies, I mean modern medicine. 

[00:24:27] Cheryl: 

I just saw a post that was saying, even — sorry, just throwing this out there in case it resonates — that they’re like, we need to stop saying Western therapies, because it’s really modern medicine, because modern medicine has been informed by many other cultures, not just Western. 

[00:24:46] Tina: 

No, we definitely need to change that mindset. I don’t disagree at all. And a lot of times they’ll label it Eastern therapies, like Ayurveda or like Chinese medicine or natural things like that. But you’re 100% right. It’s really modern medicine. And I think it’s associated with the West and that’s, yeah, that’s why it is met with distrust. And the more we call it Western medicine, the more those divisions are there and that distrust is there. So, I, it is a really, really important point that you’re making. And I think the stigmas that we’re talking about are not just towards the bowel disease or the nature of the disease, even mental illness falls into this, right? Mental health and mental illness are extremely stigmatized in many communities of color. And it’s like, “Oh, no, no, no, that’s not a Brown or Black problem.” That’s often what we hear. And so, we don’t seek that kind of care. 

And often, with these chronic illnesses, we do need mental health care, too. This is a lot. It’s a massive burden for us to take on and carry as patients and our families, too. So, a lot of these things are stigmatized, but the other thing that’s really stigmatized is the use of modern medicine and modern surgery to manage these conditions. It’s almost like it’s a failure on your part that you couldn’t get this under control using alternative therapies or complementary therapies. And that’s the other thing that’s stigmatized in a lot of our communities. 

[00:26:19] Cheryl: 

Yeah. Oh, a hundred percent. And I was just going to say that I don’t know if you’ve talked to, have you talked to Sukhjeen Kaur? She is like ‘Chronically Brown’. I had her on the podcast a while ago, I’m looking at 2021, and she really blew my mind as well on this. And so, I’m just — 

[00:26:35] Tina: 

Oh, yeah, She and I are friends. 

[00:26:37] Cheryl: 

Yeah. I was going to say, it’s not a very big, I’m sure like you’re doing a lot, but it’s a small world, and hers — 

[00:26:45] Tina: 

It’s a really small world. And there’s also, Trishna Bharadia, who I can put you in touch with if you’d want to talk with her. She’s in the UK as well, and she works with the Asian MS Society. 

[00:26:56] Cheryl: 

Oh, that’s so, it’s just so, I don’t know. I’m just like, yes, I just, I want to amplify your work because this is so important. And I kind of, I mean, I’ve been so like, blah, blab all my thoughts and into the Universe in the past. And I, know there’s been times when I’ve tried to help reduce the stigma around using Western medicine, or modern medicine, and I’ve probably done so in a way that wasn’t — like, someone pointed out to me gently once that they were like, you know, you need to be, you should be a little mindful about how you talk about people saying, “Just try yoga,” or, “Try these supplements,” because that could be culturally motivated. And I was like, oh, my God, hello, I have an anthropology minor, but I did not, you know what I mean? Brain, we have blind spots. So, did you have a hard time trying yourself like trying Western — I mean, I have to get in the new, having modern medicine? 

[00:27:47] Tina: 

No, I do it, too. I mean, that’s just what we know, right? So, it’s something we’re going to all have to work on. 

[00:27:53] Cheryl: 

Yeah. Yeah. Did you have an evolution towards taking, like, in your own journey, treatment? So, then you mentioned Ayurvedic medicine and then, how did that go in your journey? 

[00:28:08] Tina: 

I — you know, I hate to use the word disastrous. 

[00:28:13] Cheryl: 

It’s appropriate sometimes. 

[00:28:45] Tina: 

It is appropriate sometimes. And, you know, some people will come after me for that. And it is what it is. But I’m not going to lie. Like I, my family was very much against modern medicine. They were really scared of the side effects. And that’s usually what is the case is the fear of the side effects overtakes the understanding of how much quality of life you can get from being on that medication, and that maybe those side effects will never happen. Just putting that out there. 

[00:28:48] Cheryl: 

I know, I’m like, I really think we need to communicate to people, side effects are just a possibility. They’re not a guarantee. I mean, I have so many medicines I don’t have any side effects on. Anyway. So, yes. 

[00:29:02] Tina: 

Exactly. 100%. So, biologics, really scary for a lot of people, including our community. And the first thing my mom said and my grandparents said when I was asked to be put on a biologic when I was 24 is, “Oh, no. We have to retry all the other forms of complementary and alternative therapies out there.” And I’m like, no, I’ve lost so much weight. I can’t do this anymore. And it got to the point of me trying a lot of these therapies because families are — it’s crucial. They’re integral to our care. We talk about shared decision making in appointments. There’s no shared decision making in our Asian cultures without our families. Yes, there might be exceptions to that rule. I don’t want to speak for everyone, but I’m, if I’m 24-years-old and I’m not taking my mother to my appointment or, you know, a family member or many family members to my appointments, it’s almost like why is your family not involved in this? Your family’s supposed to guide on this. 

So, my family and my doctor need to see eye to eye too. And that was not happening. And that’s why I’ve labeled it disastrous because it was a constant tug of war. Do I listen to my doctor or do I listen to my elders? And it’s not a good place to be in as a patient when you’re just trying to get better. So, I did try a lot, a lot of different forms of complementary and alternative therapies. I do have respect for some of these forms. I do use some for my arthritis and stuff. I use a lot of different oils and things like that now, I go for acupuncture. I look at complementary and alternative therapies as adjunctive therapies, as secondary. And I don’t take any pills or supplements without my doctor reviewing the ingredients or without my doctor suggesting those supplements or vitamins or whatever. I don’t take anything like that, put anything into my body unless my doctor’s looked at it. 

If it’s topicals, you know, okay, fine. But I really feel like there is a secondary role for these kinds of things, and that I feel like for immune-mediated conditions like ours, Cheryl, a lot of times we do need medication. And it is an acceptance process in communities of color. Oftentimes, these medications are so stigmatized and the use of them and even surgery —wait till I talk to you about ostomy surgery. God. it’s just, it’s an acceptance journey to realize you need something like this. And that does bring me to ostomy surgery is, you know, Cheryl like —

[00:31:50] Cheryl: 

Oh, can you tell them what an ostomy is, just really quick? Okay. Oh, good. Okay. I just want to make sure. 

[00:31:56] Tina: 

Like, I, when the, when I finally did get on the biologics, we tried really hard, shortened the dosing, double the dosing, didn’t work. It was too late. And that’s the other thing I want to emphasize is oftentimes you can stop the progression of these diseases if you start the therapies early enough. But if you delay and if you wait, which oftentimes the acceptance process results in, the disease can get worse. And that’s what happened to me. And I ended up in surgery. But again, it was emergency surgery because for six to eight weeks, my family was like, no, you cannot go for surgery. What was the surgery? It was removing my colon and most of my rectum and giving me a bag on the outside. So, small portion of my small intestine was brought to my abdomen and a bag was put over it. So, a pouch was put over it externally and my family was up in arms, Cheryl. They were like, “How could you do this? You’re 24-years-old. Who’s going to marry you? This is such a disgrace. It’s so foul, smelly, disgusting.” 

By the way, it’s not foul, smelly, or disgusting. It’s perfectly fine. There are some beautiful models out there who are modeling it. I’m not really — out of respect for my family and in laws and husband, I don’t model my ostomy bag. But I will wear a sari or I will show that you can live a life with an ostomy bag. An ostomy bag can give you your life back. It is a different way of pooping. It’s a different way of going to the bathroom. You don’t have pain through your bottom anymore. You’re not bleeding through your bottom anymore. And I do have an ostomy bag. I tried to reverse it to get married. My family was like, you need to reverse the thing. I tried doing it. Nothing worked. 

So, it’s just one of those things, again, to get to the acceptance process. What do we go through in that process to only end up back in that same spot? So, that’s been my journey is just accept some of these things up front. For me, if I had accepted modern medicine, modern surgery early on, I feel like my outcomes would have been completely different. I don’t know if I would have had this many surgeries. 

[00:34:20] Cheryl: 

Yeah, I mean, and it’s, I think your story is just, is very important. And we’ll never know, right? And there are people with rheumatoid arthritis, they call it difficult to treat RA. It’s anywhere from 5% to 20% of people do have kind of treatment resistant disease that even when you hit it with all the meds, like I have a couple friends, it’s just such really, they’re in such a hard place, they’re on medicine number nine in two years, and you’re just like, oh man. Like I, I have treatment. What was the opposite of resistant? Treatment happiness?

I, but mine, they eventually wear off. I’m on biologic number six in 22 years, but I am a testament to like the typical experience of somebody whose body does respond to the medicines. Which again, in rheumatoid arthritis is like about 80% to 95% and I went into remission quickly. But I didn’t have these cultural barriers and, you know, ultimately it is your own body for whatever reason. You can decide what you put in and out. It’s just a matter of being informed fully as to that decision. And it’s just, thank you again for sharing. And I think I’ve learned so much about ostomies and how people thrive with ostomies through — I learned about them in occupational therapy school briefly, but then on social media, there’s been such a great work on destigmatizing them there, you know.

[00:35:40] Tina: 

Yeah, no. And I will say just about ostomies in general, I think we’re often afraid of what we don’t know or understand. I think that’s why awareness and education is so important to know, look, this isn’t that bad. I was tagged in a UK group yesterday. And they tagged me because it was a South Asian, young South Asian man saying he’s tried all the medications and his family’s really against the ostomy. And I’m like, okay, this is my fourth ostomy I’ve tried to reverse through God knows how many times. And it’s not worked out well, and I can tell you, I can assure you, that there was a time I was begging my doctor for the ostomy back because I was so sick. And because the ostomy allows me to eat again, it allows me to go out again, go to the movies, go out to dinners, travel all over the world. It is truly a lifesaver. And I think it’s really important to educate yourself and recognize this is a treatment option, too. And that you can often get a lot of life back. And it really saved my life. Like, at 24-years-old, I was 85 pounds. 85 pounds. 

[00:36:52] Cheryl: 

Oh, my gosh.

[00:36:53] Tina: 

I know. I know. And my normal is like 135, 140. So that, that tells you like, and I gained it all back and it took time for my Chron’s to come under control and then I gained it all back. But it’s just, it’s amazing how far modern medicine, modern surgery has come, and I think it’s important not to look at it as the enemy, but to look at it as something that can help us, that can be a tool in us getting better. And I think oftentimes we want to do everything under the sun besides medicine or surgery for our diseases, and I think it’s important to look at what is the gamut that we have available to us. And these are all tools in our toolbox. And if we want to do complementary alternative therapy on the side, work with our doctors to see, let’s optimize the medication, the surgery first, optimize nutrition, optimize our mental health. And then, sort of, you know, if they think it’s appropriate, maybe we try that acupuncture and see if it helps, something like that. That’s what I would recommend to patients. 

[00:38:04] Cheryl: 

It’s really a both/and not an either/or. There’s no reason you can’t do them alongside each other. 

[00:38:10] Tina: 

We just need to be careful and just be mindful of making sure that you’re not doing anything that could you know interfere with your medications.

[00:38:19] Cheryl: 

Yes, a hundred percent. Well, do you have time for one last question? 

[00:38:23] Cheryl: 

Sure. 

[00:38:24] Cheryl: 

Okay. Okay. So, this, I mean, you’ve answered this already kind of in some ways, but one of my favorite questions to end on is what does it mean to you to live a good life and thrive with IBD and inflammatory arthritis? 

[00:38:39] Tina: 

Such a good question, Cheryl. I think being able to live my life again, have quality of life again, means the world to me. To own my Chron’s, the name of my blog, Own Your Chron’s, is really how I live my life. And I want to make sure that I continue to empower other people to see the other side of this disease. There is a light at the end of the tunnel. Yes, I know not everybody achieves remission, but you can get to a point where you can live a better life and live the kind of life you want to live. A more meaningful, purposeful life that you want to live. And it’s, hard to see that, but that’s what gives me joy every day to make sure that I can do that for myself and that I can make sure I can help others do that for themselves, too.

[00:39:29] Cheryl: 

That’s beautiful. You’re such a pro. Well, thank you so, so much. You really have turned so much of your own pain into such a beautiful mission. And I just, I’m such a huge fan of all your work. So, I’m very glad that we were able to talk today. I know you’re in pain right now and just, it’s just, people, it’s just so hard for people to imagine like how much people go through. So, I just, I appreciate you so much and we will — everyone, all her links will be in the show notes, so make sure to go check out Tina’s work and follow South Asian IBD Alliance and Own Your Chron’s. All right. Thanks so much. 

[00:40:09] Tina: 

Thank you, Cheryl. Thanks everyone.

[00:40:10] Cheryl: 

Bye-bye for now! Bye.

Add comment

Your email address will not be published. Required fields are marked *