TW/CW: This episode features graphic description of rectovaginal surgery, as well as discussion of suicidal ideation.
Tina Aswani Omprakash has been a Crohn’s patient for 14 years, and is the award-winning patient expert and advocate behind Own Your Crohn’s. Her aim is to normalize the rhetoric around chronic illnesses and disabilities in order to help patients own their ailments to live fuller, happier lives. Having endured multiple surgeries and overcome the stigma of her disease among family and friends, she is now pursuing a Master’s degree in Public Health at Mount Sinai’s Icahn School of Medicine. Tina is involved in IBD Social Circle and is on the Board of Advisors for the HealtheVoices 2020 advocacy conference. She also sits on the Board of Advisors for Health Advocacy Summit, the non-profit founded by former guest Sneha Dave. Tina was recently awarded the 2019 Healio Gastroenterology Disruptive Innovator Award in the Patient Voice category at the American College of Gastroenterology conference for moving the needle on GI care for patients. Via her platform of influence, she spearheads public health causes, including those proposing research for and creating awareness for inflammatory bowel disease (Crohn’s and ulcerative colitis), life-saving ostomy surgery, gastroparesis, fistulizing disease and initiatives supporting health concerns for women and racial, ethnic & sexual minorities.
Key links mentioned in this episode:
Tune in as Tina shares:
- that early on, she was additionally diagnosed with Lyme disease and Epstein-Barr Virus (EBV)
- that Crohn’s disease runs in her family, and was fatal for her father at the age of 39 (when she was 8)
- that at 21, she was diagnosed with mild ulcerative colitis — and neither given the diagnosis directly nor medicated
- proactive steps to take control of your health: requesting your medical records and labs, and seeking second opinions
- her first life-and-death experience: she developed C. diff after taking courses of antibiotics to treat contracted gastroenteritis — and had to leave work and move home
- the cultural stigma associated with IBD as a woman of South Asian descent
- that she had a 4-step J-pouch surgery after a temporary ostomy, but she developed chronic refractory pouchitis — and then went back to Wall Street
- that she developed her first rectovaginal fistula in 2011 — after one year of marriage
- how dehumanizing and desexualizing her experience has been
- that she has traveled to Cleveland Clinic and Mayo Clinic for treatment, and has had over 20 surgeries to-date
- that when trying biologics again to treat her condition, she went into anaphylactic shock — and then later, developed pyoderma gangrenosum, hidradenitis suppurativa, erythema nodosum, and Sweet’s syndrome
- that she spent 6 years with her J-pouch, and developed 4+ rectovaginal fistulas despite the use of biologics and follow-up surgeries
- that her J-pouch removal surgery was botched — by a doctor who had previously saved her life in 2008 — and as such, she was torn about pursuing a malpractice suit
- that follow-up surgery to correct the J-pouch issue revealed an abscess and open wound, which required more extensive long-term care
- her second life-and-death experience: at this stage, she was a ticking time bomb — considered septic, with a fistula growing toward her spine, and told to act fast to avoid potential paralysis
- that she ended up with a JP (Jackson Pratt) drain attached to her bottom and was told she’d need 3 more surgeries — and medical PTSD finally kicked in
- breaking point: when she became suicidal
- how her mom stepped up for her at her worst
- that she now lives with a permanent ostomy
- that she now has an additional diagnosis: gastroparesis (but was also diagnosed with IBS-C)
- that in early 2016, her Crohn’s disease went into remission
- how she’s navigated disagreements between different doctors on her medical team
- that her currently-advised diet consists largely of soup and smoothies
- that one of her doctors now believes she may never have had Crohn’s, but possibly had severe inflammation all along
- that advocacy work has become a coping mechanism for her
- how COVID-19 has influenced her healthcare choices
- how she’s experienced prejudice as a racial, ethnic, and cultural minority — both within and outside the medical system
- that in many ways, “coming out” with her health story 2 years ago was social suicide for her — she lost friends who couldn’t handle either her illness or her outspokenness as an advocate
- the role of mental healthcare in her approach to wellness
- how she got involved in patient advocacy
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Lauren: All right, guys. Thank you so much for joining us. I am here today with Tina Aswani Omprakash. Tina is a public health advocate and actually a student right now, working toward her Master’s in Public Health, which is very exciting. And she’s also the writer behind the blog, Own Your Crohn’s, an award-winning blog about living with Crohn’s. So Tina, thank you so much for joining us.
Tina: Thank you so much for having me today, Lauren.
Lauren: Oh, it’s such a pleasure. Actually I’ve been following you for a while. And it’s such a thrill when I’m following someone, and then they reach out to me, and we end up having conversations. It’s always a joy for me. So it’s very exciting to have you on the show. And I’m excited to talk more about your life and your experiences. And with that in mind, let’s start from the very beginning. Can you tell us when you first realized that you had something going on health-wise, and what steps you’ve since taken to get your health under control?
Tina: Sure. I can go back to the very, very beginning. When I was a child, I had a lot of joint pain and eye issues. I had pink eyes a lot, and my ankles and my wrists were always hurting. And the doctor or the pediatrician would always tell my parents, “Oh, it’s just growing pains. It’s fine. She’s got conjunctivitis. Kids get this all the time.” And we kind of just let it go for a long time. And I think around 18 or so, when I entered college … I had gotten Lyme disease, mono, all those things.
Lauren: Oh, my gosh.
Tina: And I know there’s some studies associating inflammatory bowel disease with Epstein-Barr virus, with Lyme disease. So, that happened. Then I had to take some time off from school. And I remember around the age of 19, 20, when I was studying abroad in England, I started having a lot of gastro, reflux type issues, and a lot of constipation.
Lauren: Not caused by the British diet! (laughs)
Tina: Not at all. I think it was just a function of my body starting to show me that something was off. So that’s kind of how things got started, and I didn’t have health insurance through college, so I didn’t really have it checked out. When I started to work full-time, at that point I had health insurance and I was, like, look, this Crohn’s disease runs in my family. Perhaps I should see a specialist and see if this is something that needs to be evaluated, and if I need to be on medication for it. I had done a lot of research on it. I really wasn’t symptomatic as far as the traditional symptoms that we see with inflammatory bowel disease — whether it’s diarrhea, all sorts of gastro issues, vomiting, abdominal pain, lightheaded-ness, anemia. I hadn’t really experienced all that yet. But I was just sort of being proactive.
And also the fact that my father had Crohn’s disease, and it actually took his life at the age of 39.
It was that factor that was at the back of my mind, because I was eight years old when he died. So, growing up, there was this expectation that my sister and I would probably end up with this disease. It is something that sometimes gets passed down. That was heavily weighing on me. So I did go and get it checked out. That’s when I had a colonoscopy done. I was, I think, 21 at the time, and they didn’t tell me that I had mild ulcerative colitis at the time. That’s what they were calling it. It took me getting the medical records from the hospital where it was done, in order to find out. They didn’t medicate me, nothing.
Lauren: I just don’t understand how you can literally have a diagnosis, and they not tell you. They just thought it wasn’t severe enough?
Tina: That’s what I asked the doctor, when I came back! I ordered the records a few months later, because I was starting to have issues then. And I was, like, let me get this, let me hold on to this.
Lauren: I just want to highlight that as a first step in taking control of your health. And that’s a really big thing. Because sometimes it takes a second set of eyes on our labs to actually gain some insight, and sometimes get the proper diagnostic criteria going. And that’s exactly what you did. You took control by requesting your results.
Tina: Absolutely. And I think that’s what I was trying to do, I was trying to be proactive about this in case I needed to switch to another institution. Because I was working in New York, and I did go to a community hospital — a local doctor in New Jersey, where I grew up. So that was on my mind as well, and I started to have symptoms a few months later. So at that point, I requested the medical records, and I saw, this says I have mild colitis. Why didn’t he prescribe anything? Why didn’t he mention this at the colonoscopy? Why wasn’t this brought up to me? So I was a little bit upset about that.
Lauren: Yeah, I would be upset, too!
Tina: Rightfully so. This was 2006, so about 14 years ago, and I asked the doctor, “Why was this not revealed to me?” And he was, like, “It wasn’t anything major that I thought needed to have medication or much alteration. But now that you’re presenting with symptoms again, perhaps we need to reevaluate.” It got really bad. I had a flare-up; that was my first flare-up, and that was June of 2006. So five months after I had the colonoscopy. I was admitted to the hospital, because I nearly fell outside my workplace because I was anemic and dehydrated, and just felt dizzy. So I was hospitalized back at that community hospital; my family picked me up and took me straight to the hospital. From there, he did another colonoscopy, and he’s, like, “It looks like it’s progressing.” And I’m looking at him and I’m, like, “Why didn’t you prescribe something?”
This was really a very upsetting moment for me. I was, like, I clearly need to change care.
And I think that’s an important thing to highlight as well — taking charge of your own care and being proactive about it is so, so important. I finished up the hospital stay, he prescribed medications; I was allergic to one of them, had hives all over my arms. I was just, like, this is not gonna work out with this guy. So at that point, I started my hunt for a new doctor. I was willing to cross state borders, whatever it took to get proper care. Because I knew what this could do in my family. I even went to a specialist down at Johns Hopkins, that a friend had recommended. She was, like, “You definitely have this. There’s a question mark if it’s Crohn’s.” And I was, like, “Can you recommend somebody back in New York?” She had given me a couple of names, and that’s when my journey in New York began with a physician here who I actually really like and was my doctor for many years. So I just have to say, sometimes it takes time to get the diagnosis. Sometimes it takes time to find the right doctor who you have a good relationship with, and who’s actually going to take the time to explain your disease to you. And take the time to titrate and change your medications should you have allergic reactions or side-effects. So don’t give up; please keep looking for the right fit for yourself. I think that’s a really important thing that I’ve learned over the course of all these years with Crohn’s disease. That’s kind of how my journey started. It was pretty rocky and things were mild, I’d say. I was labeled “mild ulcerative colitis” for the first couple of years, till 2008 hit. Then things started to really shift and change for me.
Lauren: You mentioned 2008. It’s a year when a lot happened here in the States, too, and this recession started. I’m wondering whether that may have been a contributing factor, stress-wise, on your physical health, too.
Tina: That’s a good question. 2006, 2007, I was working in banking. I worked at an investment bank. I think the stress levels were pretty high in general. The banks were doing really well at the time. But that meant I was working anywhere from 12 to 15 hours a day. And during book close, when earnings season happens for three weeks, I might have been working more than that. So obviously, my diet, my sleep schedule … things were kind of haywire during that time. So yes, I do think that definitely contributed. I think later in 2008, when things got bad with the economy, I was already starting to have issues. I think it was New Year’s Eve, leading up into 2008, I basically did not go back to work at that point because I had gotten so sick. In late 2007 for my 24th birthday, I’d gone to Cancun. My boyfriend at the time, who’s now my husband, had taken me for my birthday and I came back with severe viral gastroenteritis. I had my PCP prescribing antibiotics and all sorts of medications to treat something viral, which again is a problem. And I took it. I listened to the doctor, I took it, and within a couple of months I developed an infection called C.diff (Clostridium difficile infection).
Lauren: This is a really dangerous condition to be developing. So the doctors gave you C.diff?!
Tina: More or less! As a result of that C.diff, my disease also worsened, which can happen. So at that point, I was hospitalized, in January of 2008.
I had pulled away from my Wall Street career and I was basically in and out of the hospital, like a revolving door, for the next several years.
But in 2008, things got pretty serious; my disease sort of rapidly evolved from mild to severe. And by rapid I mean … in January, I was asked to take all these antibiotics to treat the C.diff. And then I was told I needed to be put on prednisone, and work my way up to 6-MP. And then I was asked to go on to a biologic. And that was really, really tough.
Lauren: Well, it’s enough that in the midst of this, you’ve had to give up your career because you can’t even work. This is such a fascinating turn of events, and I think it’s a common thread in the stories that we hear on the show — that we overwork ourselves, because that’s kind of the expectation now, if you have a job, that you’re overworking yourself, no matter what you’re doing. And then our bodies give out on us. In your case, it sounds like there was also some potential misdiagnosis. Maybe, medical malpractice in there, too, which of course can happen. We’re going to get into why you’re in a very special group for that as well. It’s amazing to me that it takes this overwork, this expectation culturally that we have, and then the medical system not serving us. And it sounds like you were bounced around enough that things got so severe. I mean, this sounds life-and-death to me.
Tina: It was life-and-death. And it was a really tough time. Not only did I have to leave my New York City apartment, move back home to my mom’s house, which was 50 some odd miles away from New York City, in New Jersey.
Lauren: And this is totally dehumanizing. It’s enough you’ve lost your career. Now you’re living back at home!
Tina: Now living back at home, and I’m shitting my pants for lack of a better phrase. It got to the point where I was going to the bathroom 30 to 40 times a day. And it wasn’t just from my bottom. I was vomiting, too, and I was vomiting blood, I just got so, so sick. And I have to add in a piece here … and I’m sorry for the TMI, but …
Lauren: No, this is the show for that, so go for it!
Tina: (laughs) I have to add in here … at this point, I was 24 years old, and I was getting a lot of pressure … and this goes into some of the cultural stuff. I’m South Asian-American. And what had happened during this time was, I was getting blamed … you don’t eat properly. You probably drank too much. You probably didn’t take care of yourself. It was this blame game.
Lauren: And that was coming from doctors and family and friends, from every direction?
Tina: Not so much, doctors. My doctors, they were, like, “This happens at this age. You also have a family history.”
But it was coming from friends and family. And my extended family.
“Oh, she’s probably been drinking too much, partying too hard, not eating well, probably eating junk.” I’m 24 years old. That’s what kids do. We might drink; I wouldn’t say anything was out of the norm of what normal 24-year-olds do. So, I was sort of feeling very guilty … like, did I do this to myself?
Lauren: And that’s interesting, too, because as a woman, all other factors aside … as a woman, you’re getting that kind of feedback. Would you have had that same feedback if you were male?
Tina: I highly doubt it. And I’ll give you examples down the line, but just hearing from men with the disease, as an advocate? In my culture, they’re treated very differently from women. And in this country, as a racial, ethnic, cultural minority, we’re also treated differently. So I think there’s several layers that we have to deal with as women of color and different ethnicities, that make it very difficult. And at that age, who’s taking you seriously, when you’re a 24-year-old woman? Nobody.
Lauren: it’s hard enough to be taken seriously at work. And then, to have that rug pulled out from under you. I mean, who else is taking you seriously?
Tina: Exactly. So this was a turning point for me in the sense that okay, I’ve just sort of lost my entire life. And I was afraid that my boyfriend was going to leave me, because at this time, with my culture and everything, his family was like, “Oh, my God, what’s going on with her? You can’t be with her.”
Lauren: Yeah. Is she defective?
Tina: She’s defective. She’s flawed. In a lot of cultures around the world, arranged marriage is still a thing. And even if it’s a love marriage that you do of your own choosing, there are certain criteria, certain boxes that have to be checked off.
And being sick is not one of them.
It affects so many things. It affects pregnancy; it affects … oh, is this person going to be able-bodied enough to take care of you? I completely understand those things. But there is something called companionship, love, and we do also deserve to be loved. Whether disabled or abled, whatever we are. So, all of this stuff was coming at me at once.
Lauren: That is so much to deal with, aside from the fact that, also at that age, you’re sort of just coming into your own, too. So you were just coming into your own, the rug was pulled out from under you — not just in terms of career, but also with family, with your relationships romantically. With everything. So, it’s the potential to lose every part of what you had established as your own identity.
Tina: Absolutely! My entire identity was in flux at this time. I was just, like, oh my God. Everything just went. It was like an explosion. It’s kind of like what we’re dealing with now with the coronavirus, Life, as I knew it, had changed. And that was really, really a hard thing to digest. For lack of a better word!
Lauren: Yeah, I know. Nice choice of words there! So, all of this was going on. And you had to find a way to get well in all of it. Obviously, we know that you end up married to your then-boyfriend. So that seems to have worked out well. But how did you end up where you are now, from that point? I mean, this is a huge journey you’ve been on.
Tina: Huge, and I’ll tell you, at that point, I ended up in emergency surgery. On the 4th of July in 2008. I had tried all the medications that were available at the time. Plus culturally, there was a push to try alternative medicine. And by alternative medicine, I mean, complementary medicine — like Aruyveda, homeopathy, naturopathy, even Chinese herbs I tried. I got so sick that I was 50 pounds lighter than six months before, 50 pounds lighter than what I am now. And I was being fed by total parenteral nutrition, TPN.
And literally, the hair on my head was starting to gray. I was malnourished.
So I ended up in emergency surgery, and the surgeon told me, “I’m not sure I’m going to be able to save you.” My family was very much against surgery, because I would end up with an ostomy bag to start. And that was a huge problem for my family. It’s culturally unacceptable to have an ostomy.
Lauren: Even if it’s lifesaving.
Tina: Even if it’s lifesaving. My father had one; he hated it. He would rip it off in the hospital in a coma. It was so bad that my mother was scarred from it. She was, like “Tina, please, whatever you do, do not get the ostomy. Your father hated it.”
Lauren: She had her own version of medical PTSD.
Tina: Yes. And I was, like, “Mom, I’m 24. I need to do this. I’m dying.” And so there was that family stress, too, that I was dealing with.
Lauren: Well, I also wonder … you’re growing up sort of between two cultures. I wonder if you had been completely immersed in one culture over the other, that may have changed your decision, too?
Tina: 100%. I completely agree with that statement. I can’t tell you … had I not been in this country, I don’t know what would have happened. And I’m very, very fortunate and I count my lucky stars every day. I had the surgery done. It was very hard, because my mom was my primary caregiver, and she was very much against it. So coming home, it was very much of a struggle. Because she had to help me with the ostomy. And like you said, she had some serious PTSD with it. But I think that changed over the course of the next several months. She was, just like, “Oh, my God, you actually like this thing.” And I was, like, “Mom, it saved my life!”
Lauren: Because she saw you getting better, rather than what she’d seen with your dad, which was a progression into his early death.
Tina: Yes. She did a 180 within a couple of months. And she was, like, “You know what, this was the right thing. You made the right decision, and I’m happy that you’re getting better.” So that support came back.
Some of the stress levels, they also came down, and I started to begin my recovery at that point.
The thing was, I was going to have a 3-step J-pouch done; it was done as four steps. I had a lot of abscesses and complications because I was too sick. So I had a 4-step J-pouch surgery done. But even before take down … meaning, even before my ileostomy, my stoma was put back in reversed, and my J-pouch was connected to the rectal cuff and I started to go again. I already developed pouchitis three weeks before that. And so I started talking to the surgeon, “Can I just keep the ostomy? I’m fine with that.” And at this point, my family was like, “Tina, no one’s gonna marry you with an ostomy.” I just kept hearing that.
Lauren: Meanwhile, you’re still with your boyfriend through all this?
Tina: Yes. And his family’s, like, “Leave her. She’s damaged goods.” And he’s, like, “No, I want to marry her. I’ve practically been married to her for the last couple of years. There’s just no marriage certificate. I can’t just walk out on someone I love.” So it was a very trying time. I went ahead with the J-pouch surgery with the connection, and it didn’t go well at all. I developed chronic refractory pouchitis from the very beginning. And I went back to my Wall Street career.
Lauren: Oh, my goodness. So there’s an extra layer of stress there that you added on in the midst of all this madness. Okay.
Tina: So, come May 2009, three months after my last surgery, I went back. And I went back for a good year. And I couldn’t do it anymore. I tried going part-time; I tried taking a position that was lighter. I went back doing 50 hours rather than 75, or whatever.
Lauren: All of it’s too much, yeah.
Tina: When I asked for part-time, they were, like, “You’re already 50 hours.”
Lauren: But that’s Wall Street part-time, isn’t it?
Tina: (laughs) Yes! So that was definitely a difficult transition. I did what I could, but it just did not work out for me. At that time, my then-boyfriend proposed, in November of 2009, and we got married in July of 2010. And I ended up going out on disability again, because I was actually flaring throughout the entire marriage ceremony and wedding day. Between the wedding planning, going back to work, all the stress of people being, like, “How is she getting married?” Telling me, “Don’t get married.” And people telling him, not just his own family, people telling him, “You deserve so much better.” And I’m listening to this, where he’s telling me, and I’m, like, “Oh my God, do you not know what this is doing to me?”
Lauren: It’s enough that you’re already grieving the loss of your able-bodied self, right. And then to have this additional judgment heaped upon you from all directions. Yeah, that’s gonna be stressful, and that’s going to affect you physically. It’s like a vicious cycle, isn’t it.
Tina: It is, it is. And honestly, it really takes a toll on your self-worth.
It makes you feel worthless and unproductive.
So anyway, we did end up getting married. It was very hard because I was put on antibiotics chronically. And during our wedding ceremonies, I was flaring and needed all sorts of enemas and suppositories — steroid ones — to keep my pouch at bay to get through those few days. My journey got very, very complicated after we got married. Things started to really, really slip in the sense that I developed a fistula into all of this. Are you familiar with a fistula?
Lauren: I am. But for those who are tuning in who aren’t, can you please give them a little info?
Tina: Yeah. So what happens is, ulcerative colitis is mainly a disease of the colon, inflammation of the colon. But when you have Crohn’s, it can go anywhere from the mouth to the anus. And remember, I was diagnosed with ulcerative colitis. But there was always this question mark as to whether or not I had Crohn’s disease. Crohn’s disease is a more penetrating disease, and you can have all sorts of extra intestinal symptoms, including eye issues, joint issues, skin issues. But another feature of it can be a fistula. I developed an abnormal tract. Basically, the inflammation got so severe in my J-pouch that the mucosal lining broke through, and there was a tract that formed into my lady parts. The rectal vaginal fistula.
Lauren: Wow, and this is as a newlywed.
Tina: Yeah. And it was a very difficult thing for me. I had been put on prednisone again at that time. I believe I put on about 40 pounds. So it’s like a really big seesaw, you know, going from 125 pounds up to 160 all of a sudden.
Lauren: And that kind of rapid weight gain and loss isn’t healthy anyway, but this is all as a result of drugs that were attempting to make you healthier.
Tina: Yeah, while it was attempting to make you healthier, the disease is taking its toll; it was all over the place. So, I developed my first fistula in 2011. And we had been married a year. We were going to Cleveland Clinic at this point to get second opinions galore to figure out how to deal with this. And when I say, having a fistula is beyond dehumanizing — it really is.
And it makes you feel like you’re not a woman anymore.
Lauren: Well, especially in the way that you developed it, that it affected your sex life as someone who was recently married. The one area of pleasure in your body is suddenly transformed.
Tina: It’s gone. And it was hard enough anyway, with all the surgeries that I had. It was complex with the J-pouch. All these things can affect both a man and a woman’s sex life in general. So having a fistula only complicated that. And not only that, there’s mucus, there’s stool, there’s pus coming through … and that’s not the way things are supposed to be. I was 28 years old and it was probably the most harrowing thing that could have happened to me at that age. So I had multiple surgeries to try to correct it. Eventually they just ended up putting a c-ton, leaving it open because the surgeries couldn’t do justice to it, couldn’t close it. They tried something else. They tried to disconnect my J-pouch to allow time for the fistula to heal. So what they did is they gave me a temporary ostomy again, to rest the bowel — that was closer to my rectal cuff.
Lauren: Even though having the ostomy can be lifesaving, these are very invasive surgeries. You’re going under time and time again, cutting into your abdomen, to have the the ileostomy come through. All of this kind of stuff. It also takes time to heal. This was a pretty quick turnaround, and I imagine challenged your body to heal very quickly.
Tina: It really did. They even scraped the rectal cuff because I was having something called cuff-itis which is inflammation of that little portion of the rectum that was left. The number of surgeries, I’ve had over 20. At some point, you just lose count because you’re constantly going under. This was really difficult dealing with the fistula. And then giving me the temporary ileostomy, we tried that; we tried enemas with that. This was something that was compounded for me; didn’t work. I developed another rectal vaginal fistula, and at that point my doctors decided, “Look, Tina, we’ve got to restart you on biologics. Didn’t work; we tried that for about four months.
And it’s an arduous process, to try new medications and keep failing them.
Lauren: Because it takes time for your body to adjust onto these biologics, in particular, right? And you have to get on a very strict schedule with them over time. So four months with Humera … you need at least four months to know whether it’s even working.
Tina: Exactly. That’s the thing. You have to give that amount of time and be patient — and also put your life on hold during that time. So I wasn’t working during this entire time. My mom was taking care of me, even though I was married. So it was a very tricky time, and my husband was working a lot of hours to make sure we had insurance and he could afford my care. It was very, very difficult, but I started biologics and I developed anaphylactic shock. Nothing’s working. I have whole body arthritis. I have skin nodules all over my legs; some of them were necrotic, it’s called erythema nodosum. I had pyoderma gangrenosum, and also had Sweet’s syndrome — hidradenitis suppurativa — all over my legs. It was so mind-numbing; I was, like, what is going on with my body? This disease is just completely taking over my body.
Lauren: From the inside out. Now you’re having the visual; you’re seeing it on your legs and stuff, and now it’s not something that’s just happening inside, too.
Tina: Exactly. It was just attacking anything and everything it could find on my body, literally. Then I developed two more fistulas in the next few months. Four recto-vaginal fistulas! I went into my surgeon’s office and I was, like, “You need to take me into surgery now and get rid of my J-pouch. I cannot do this anymore. Six years is too much.” Now we’re at December 2014, and he took me in the next day for emergency surgery to remove my J-pouch. And I thought … now things are over; I can really begin my healing journey. No! It was not quite that simple. The surgery was botched. Mind you, this was someone who had saved my life in 2008.
Lauren: So, was that something that could happen, or was it something that was like a malpractice issue?
Tina: I’m pretty sure it was a malpractice issue. This was very complex surgery. I think it’s very, very hard. I went to Cleveland Clinic to get a second opinion, because I was left with a chronic rectal wound three months later, and I was, like, why is this thing not closing? I’m bleeding constantly. I go to Cleveland Clinic, and the surgeon and the GI there that I was seeing, both said there were bits and pieces of J-pouch and rectum left behind.
Lauren: Oh my God.
Tina: I remember they admitted me because they were, like, “Your MRI results are showing that it’s far more complex than that. The pieces of J-pouch and rectum that look like they’ve been left behind, they’ve created an abscess and it was giant — where the J-pouch once was. It’s basically like a honeycomb. And we’re not going to be able to break through all of that. We’re going to have to go in,re-excise everything. And we’re probably going to have to take a flap from your leg to close that wound.” I was, like, “What?! I thought it was done!”
Lauren: And also at this point, if you’re dealing with malpractice, were you, like, I need to sue this doctor? Which is an additional stress.
Tina: But he had saved my life. I was just, like, I can’t do that; he’s done so much for me over the years. He’s such a good man. I toyed with the idea for a long time, but I decided not to pursue it. I went ahead with focusing on correcting this, and healing. At that point in time, I was not really okay with what the Cleveland Clinic was suggesting. I was, like, I need to do my own research. There wasn’t really much research on this.
Because it was kind of an out-of-the-box problem.
Lauren: Extraordinary, yeah.
Tina: Exactly. And what they had told me was that this abscess had a fistula coming out from it, and it was heading for my spine.
Lauren: Oh God. So you would have been quadriplegic at that point, probably?
Tina: Yeah, they were, like, “It could paralyze you, we’re not sure what to can do. You need to act.” And I was, like, “Okay.” They gave me a PICC line again, to not only feed me but also to deliver antibiotics because I was considered septic. I had sepsis.
Lauren: So this is another life and death … times two.
Tina: Exactly. It’s happened a few times, unfortunately. But at that point, I got an appointment at the Mayo Clinic to see their head. We flew out there; I was on antibiotics for a couple of months until I could get over there. I knew I needed to act fast. So I go over there … they’re looking through everything … let me just say, the fellow who sat down with me the first time, was, like, “You look great!”
Lauren: At the Mayo Clinic? Of all places! I’m coming to you because there’s something mysterious going on!
Tina: I look at him, “Really?!” He’s got this stack of papers in front of him with my medical records from God knows how many years. He’s, like, “I know you’re really sick, but I just have to say this.”
Lauren: It’s just so short-sighted, isn’t it.
Tina: It really is. But then after hearing my case, he brings the doctor in, who sat down with me for about three hours. And then he’s, like, “I’m going to need a minute. I think we need to bring colorectal surgery in.” And I’m, like, “Okay.” And 20 minutes later, he comes back with the colorectal surgeon. The doctor was fantastic. Between the GI and the surgeon, I mean, world class, really. They spent a while with me, reviewing everything. And then he’s, like, “I’m gonna take you in for surgery tomorrow morning.” And I was, like, “What?!” I knew things would be all over the place. Cleveland and Mayo have an interesting way of doing things that I think is extremely well managed. It’s almost like an assembly line. And I don’t mean that in a bad way at all. I actually think it’s very, very effective and productive how they do this. So when you call up to make an appointment, they will set up whatever they think you might need, and ask you to stay for an extra day or two in case they need to add things on. And there’s these coordinators that structure your appointments … CGI at this time, get labs at this time, go here … like, they give you a map, they give you a whole schedule that gets mailed to you and emailed to you. It’s a really very well coordinated belt, well-oiled machine, so to speak. So, I was just, like, “Wait, I was gonna go home in a couple of days, I can’t go in for surgery.”
And they were, like, “Well, you’re going to need to change your flight.”
And so they took me in for surgery the next morning, and actually my mom and husband were there with me because they were very worried about what was going on with me. This was July of 2015. Mind you, the botched surgery happened in December 2014. So seven months in between, and they were, like, “We can’t wait. We need to deal with this abscess right now.” So the surgeon takes me in, and it was an outpatient procedure. I wake up, and medical PTSD hits hard — because I see this grenade-shaped thing coming out of my body, coming out of my bottom. I couldn’t feel anything because of lots of painkillers and God knows what else. And I’m looking at this thing, and I’m screaming, asking for the nurse. And I’m like, “What happened? Why do I have this thing?!” It was a drain; it’s called a JP drain, a Jackson-Pratt drain. I have had multiple drains throughout all of my entire experiences with all the abscesses I’ve had. They leave drains coming out of my bottom. It’s awful. You literally have something hanging out of you. Or, you have a drain down your leg that has a bag that things are emptying into. It’s that kind of stuff, having these drains which are like an additional appendage on top of having an ostomy and a PICC line in your arm. So I’m, like, what am I? Some kind of circus animal?!
Lauren: It’s dehumanizing, and you don’t recognize your body.
Tina: Exactly. The nurse was, like, “The doctor will speak to you. You are in the recovery room right now. We are going to take you back to your room so that you can talk to the doctor before he discharges you.” I’m just literally freaking out, because that’s not the plan that we discussed. What we had discussed was, he’s going to attempt to re-excise the first time, see what’s going on in there and how much of it he can take out. And it turned out to be completely different. So I get back to the room. A couple of hours later, he comes in, and I’m nervous as all heck and I’m telling my husband and my mom how nervous I am. And he’s, like, “Tina, we couldn’t go through the bottom like I said we would; it was too scarred. So I created another opening.” And I’m, like, “What?!” Mind you, I’m on painkillers, so I have no idea. “We went through the side of your bottom. I made another little opening into the fat tissue. I left a drain there because this is worse than we thought. This abscess, I want it to drain for some time — maybe three, three-and-a-half weeks or so, maybe four weeks. And I want you to come back.” I was, like, “Why?!” And he’s, like, “I wasn’t able to finish this and I need you to come back, and we’ll have to open that side of the bottom wound up, go in there, re-excise everything three more times. It’s a mess.” This thing is going to flop around! I don’t have enough appendages that I have to deal with? How do you sleep at night? I’ve done this so many times, where I’ve had drains, PICC lines in my arms, dealing with an ostomy … which way do you sleep? People don’t think about these things! He was just, like, “You know what, Tina, we’re gonna have to get through this.” As if that wasn’t bad enough, the kicker was … he told me:
“You’re going to have to inject hydrogen peroxide into the drain. It’s gonna go into your pelvic cavity.”
Lauren: Oh my God, this is just to keep it all clean for the next three weeks?
Tina: To debride the abscess.
Lauren: And also, if you didn’t have a partner or a caregiver around at this point, how could you reach around to do that kind of follow-up care? But then, asking someone to do that for you … “Hi, can you please inject this hydrogen peroxide into the side of my butt, basically?” That’s not an easy thing to ask of anyone.
Tina: No, and I appreciate you recognizing because very, very few people understand how much of a toll this took on me, because I had to ask my husband to do it in the beginning.
Lauren: And that’s not sexy! You’ve already had the fistulas that you’ve had to deal with. God bless this man! He sounds like he’s wonderful, and he has stuck by you. This is what he signed up for. But this is not the kind of thing that anyone wants to have to ask anyone in their lives. This is not a pleasant experience.
Tina: Not at all. I remember that night in the hotel, pulling out all the supplies that Mayo Clinic had given me, and I sat in the bathtub, and I cried and I cried, and I cried and cried. And my husband came in. And he’s, like, “Tina, what’s going on?” I was, like, “I can’t do this to myself. I’ve been asked to do some pretty crazy things to myself over the years with this disease. But I can’t.” And he cried with me. Because it’s been so hard for him, hearing that things would be fine, every step along the way. When I got the J-pouch done … this will be the end of the road. When I had the J-pouch removed … this will be it. Or even when I had it disconnected before that, this is it. Every single time that we thought this was over, it was not over.
Lauren: And it’s also this complete lack of control or understanding of your body. Here’s someone who, culturally as a woman living in this world, is already not in control of how anyone sees her body. And on top of that, you have no control over your own bodily functions anymore.
Tina: No, none whatsoever.
Lauren: And your body’s killing you!
Tina: It’s virulently attacking me, and I’m, like, I’ve done everything right all this time! My diet’s been good. I’m taking all my meds.
Why does this keep happening to me?
I follow my doctors’ instructions; it’s not like I’ve been a renegade about any of this. It was very, very frustrating, and he ended up doing it, injecting the hydrogen peroxide — I still remember it was 10ccs. One injection full … it’s a lot to put into your pelvic cavity. And I remember screaming at the top of my lungs.
Lauren: So it really hurt?
Tina: Imagine you have a cut … you put hydrogen peroxide on it and it stings, doesn’t it.
Lauren: But this is inside, too. So this is even more sensitive.
Tina: This is not just a cotton swab of hydrogen peroxide, it’s 10 milliliters. So the idea was to help de-breed it … it was scarred over … so that he could pull the abscess out and clean that entire area. And it was effective; I’m not gonna lie. It worked. But over the course of those three-and-a-half weeks, I became suicidal.
Lauren: I really appreciate you being open about that, because I think this is something that doesn’t come up enough … how when our bodies betray us, what it does to us psychologically. And it requires this level of honesty, with being, I’m done. I’m done with my body. I’m done with this life.
Tina: I was so done. My mom has never picked up the phone and called my doctor the way that she took such an initiative that day — when I told her, “Mom, I can’t do this anymore. I’m gonna kill myself.” She picked up the phone. I’ve always handled all my care. Even being on narcotics or whatever, in a hospital bed, I’ve handled all my care. My mom and husband have been great caregivers, but I’ve managed my care … through my insurance, through everything. Understanding my disease, all of that … I’ve handled it head-on.
But at this point in time, she picked up the phone and she said, “You’ve got to get her in for surgery, like right now.”
And they pushed up my surgery a little bit, by a few days, because I was already at the point where I was supposed to go back the following week or something. They pushed up my surgery and they took me in right away.
Lauren: During that whole time, you stayed in Minnesota, too?
Tina: I went home. And I was lopsided because there was a drain on the side of my bottom. So we flew back to Minnesota again. And this was now August of 2015. And they told me, “Okay, we’re going to go back in three more times to clean all this out. And we’re going to use a vacuum, instead of taking a flap from your leg, to try to close this.” It’s a longer process. But what I was concerned about the flap that Cleveland had offered me was, is my Crohn’s going to attack that flap, too, to create fistulas there, too? So my experience was, like, “No, no, we’ve got to try to close this some other way.” What Mayo had offered me made a lot of sense. So when I went back, they did re-excise. But before, they dipped me in a saltwater pool. This was after they had to open up that small hole that they’d created, and it was the size of a small football.
Lauren: This sounds so painful.
Tina: It was traumatic. It was extremely painful. I’ve never been on this many painkillers in my life. I was on six different narcotics. I’m not joking. I was having full-fledged nightmares at night because of how many painkillers I was on; I was hallucinating. It was really bad. But what they hadn’t told me in advance, because I don’t think they realized this, is how long I would need to stay in the hospital. Because it was on the side of my bottom, it was very hard for me to sit or function. They actually wanted to discharge me. We had rented an apartment for a month in Minnesota, and we thought we would just stay there and I would have a wound and home health care. What they didn’t realize, and I didn’t realize, was how much pain this would be. And the fact that I couldn’t be discharged because of that pain. So every other day in my room, under sedation, they would clean out the wound. They tried to do it without sedation; I remember screaming at the top of my lungs. And again, my mom got up — and this is not something my mother would ever do — and she said, “Sedate her right now.” I was awake. I was in so much pain, and I still remember my mom saying, “You sedate her right now. I will not tolerate this.” Because they were trying so hard to have me deal with this and get out of the hospital. I needed my mom to say that in that moment.
Lauren: Yeah, so she really stepped up for you.
Tina: She was, like, “She needs to stay here. This is not going to work for us.” So I was there for about five weeks. And then the wound was about three inches deep, and they pulled it out. But, like I said, my journey never ends.
So, a couple days before I was discharged, I started having symptoms of a fistula again.
Lauren: Oh, no.
Tina: So I requested that they do an MRI before I was discharged. And lo and behold, they found a hole in my vaginal wall. It was really bad. They discharged me and they were, like, “You need to talk to GI about this, because this is something that has to be managed outpatient.” I was, like, “Are you kidding me? Why do I have a hole now?” So I speak to my GI, and he’s, like,” Look, I’ve seen this twice before, where the organs might be pulled out — the colon, the rectum, the J-pouch, whatever, are now gone. But it’s like this phantom-sort of thing that’s still attacking that area. I’m sorry, we were not planning to put you back on biologics, but I think we’re going to have to.” And I was, like, “Are you kidding me?” I don’t know how he did this, but he put me in a clinical trial – because there were no other options. I started Stelara in September of 2015. I coordinated the care with my doctor here in New York at the time, because they knew each other, and he got me into this trial and I was followed very closely for the next few months. And after that point, it was a very arduous recovery.
Lauren: And did you have an ostomy at this point, too?
Tina: The whole time. I live with a permanent ostomy. They didn’t touch that; they just kept going through the side of the bottom or trying to go through the bottom. The ostomy, being on my abdomen … they were, like, “We’re not touching that.”
Lauren: So for better or worse, you were still able to get stuff out of your body as it were.
Tina: I started to develop other issues with severe constipation at the time — between all the narcotics I was on, and I think it was the beginnings of a new diagnosis. I have gastroparesis.
Lauren: So how does it work when you have gastroparesis and Crohn’s disease? This is like two opposite ends of the spectrum, almost. What’s the point of having any kind of gastric system, full stop, at this point. What do you do?
It has been such a nightmare the last few years.
I finished up that course, or phase, of my life in the sense that my disease went into remission. My Crohn’s disease went into remission in early 2016. But in late 2015, I started having this severe constipation, and I was tested for small intestinal bacterial overgrowth. I was told I had IBS-C (IBS with constipation); I went from D to C now. At that point, they were, like, “Oh, we’re just going to change up your diet, and stuff.”
Lauren: But to even be diagnosed with IBS in the midst of this … in my opinion, and from what I’ve heard from people I’ve spoken to on the show, IBS is this catch-all thing. There’s something wrong with your stomach and/or your bowels, and we can’t quite figure it out, but it’s not severe enough to be Crohn’s or ulcerative colitis, and it’s not gastroparesis. It’s just this weird in-betweeny thing.
Tina: That gray area.
Lauren: So they’re like, “IBS!” But also you’re not pooping, you can only poop through your ostomy. I don’t even understand.
Tina: I could not wrap my head around it, but my bowels just kept slowing down over the years. I spent like a good chunk of 2016 and ’17 eating salads, and I could never do that. So it was, like, okay, this is working for now, soups and salads. It’s working, my plumbing’s sort of working. And then I started having to take some Miralax here and there. I started complaining to my GI doctor. My GI had left so I had a new GI doctor, and started complaining to her, “This is not getting better.” And she’s, like, “Let’s add some Miralax, and I want you to see a motility specialist.” This was just last year, so this has been going on for a while now — since late 2015. So just last year, she finally said, “We need to get you in to see a motility specialist.”
Lauren: So it took four years. The thing that’s striking me about your story so far … whether it’s as a woman of color, whether it’s as a woman, whatever layer we’re at in terms of the way that you’re being perceived by the systems around you … you are being systematically brushed aside, not treated as an emergency, and becoming an emergency because you’ve been previously ignored.
Tina: Absolutely. 100%. That doctor definitely brushed me aside, for a few years. And it was so frustrating. I’m, like, “Miralax isn’t cutting it anymore. We need to do something else.” And then I did this whole round with motility specialists in New York; I went through three of them. And I even went back to Mayo last June because my GI there, my IBD specialist, was, like, “Come back.” I’m supposed to be pooping 6 to 8 times a day with my ostomy; I’m lucky if I get once a day. And I was putting on all this weight.
Lauren: Yeah, because it’s all bloat and it’s all in stuck in your body. Which, by the way, excrement is waste for a reason. That kind of thing stays in your body, you’re going to get sick — because it’s toxins being re-absorbed by your organs.
Tina: Exactly! And I think it became an emergency, I really do. And when I went back in June finally, my doctor at Mayo Clinic, he really had to push for me. I love him because he’s such an amazing man. But the motility specialist there did not take me seriously. At Mayo Clinic. He’s just, like, “You probably have gastroparesis. You don’t need to have this test.”
Lauren: Do the f*cking test. I don’t care who you are!
He’s, like, “It’s a really awful test.” I was, like, “I don’t care. I’ve had really awful things done to me. Please, just do it.”
So I went back and I called the IBD specialist, and I was, like, “Can you please push him to do this test on me tomorrow, because I am staying anyway and because I need a definitive diagnosis. I came all the way here.” And he’s, like, “Yes.” In the meantime, that evening, I started to throw up, big time. I ended up in the ER, they did a CAT scan. They found inflammation in the last 12 centimeters of my small bowel. I’m, like, “What?! I’ve been in remission all this time.” And my IBD specialist is, like, “Tina, I don’t know that this is Crohn’s. We need to have that test done.” It’s antral manometry that gets done; and it’s basically a small bowel manometry measuring the pressure, the contractions of the small intestine to see why there’s a motility dysfunction. At which point it’s slowing down. It was an eight-and-a-half hour study. They barely put me out to put tubes down into my stomach and small intestine.
Lauren: Also, why aren’t you putting people on a general anesthesia for things like that, when you do it for a colonoscopy.
Tina: Because it’s going to slow things down too much.
Lauren: And also, it’s going to hurt like hell. I’m so frustrated for you. I want to shout at all these doctors who’ve done you wrong!
Tina: It’s been very difficult. They put 15 sensors inside me. They made me eat at certain intervals; they watched me. I get the diagnosis. I have antral gastroparesis, meaning at the bottom of the stomach. And when I came back, I spoke to my IBD specialist at Mayo, and he was, like, “I’m not 100% convinced that this is Crohn’s. I feel like you have so much constipation that it might have actually set off some form of inflammation in your bowel.” Because the ileostomy, the scope that he had done earlier in the week, looked clean. “I can’t say for certain but I don’t necessarily want to up your medication for Crohn’s.” My doctor here though, in New York, was disagreeing; she was, like, “We cannot take any chances with you given how severe your case has been. We’re reintroducing on Stelara as part of a clinical trial.” Again. They admitted me in the hospital. They re-induced me on the Stelara, and they upped my interval from eight weeks to four weeks for my Stelara. And my Mayo Clinic doctor was, like, “I don’t agree with that. But I know you have to be managed in New York, so we’re going to take it one day at a time.” In the meantime, he got me in; he wanted me to see a specific motility specialist, who I did see, and she was fantastic. And so she’s been working with me for almost a year now in terms of getting my motility under control, my gastroparesis a little bit better controlled.
I can’t say that it’s all that well controlled right now, even, and I’m on a lot of meds.
So I’ve had to alter my diet completely. No more raw, no more salads. It’s mostly soup. So I make a lot of soups in the Instapot. That’s kind of what’s been advised to do. I have a lot of smoothies. I do eat some solid foods; I’ll try to eat tofu and stuff — I’m vegetarian. I do have proper nutrition, but I’ve just noticed — especially with being stuck at home recently — I have put on a lot of weight, in the sense that I don’t think things are moving that well because I’m not able to get enough exercise in and because exercise seems to be key for me right now. And has been, to get things to move. So it’s been very, very difficult for me.
Lauren: So the journey’s not done is the bottom line here. We still don’t exactly know what the final answer is going to be.
Tina: We don’t. And I’ll be really honest with you … after I came back from Mayo, I was very disgruntled with my doctor, my GI doctor here in New York. My husband was very upset because they were just trying to escalate my biologics. We weren’t even sure if this was Crohn’s or not. I did listen to her. But I got another opinion at Mount Sinai. So I went to another hospital system. And I actually ended up switching my care. This doctor was, like, “I don’t agree at all. I agree with Mayo. But I’ll leave you on Stelara every four weeks for now.” In December, he scoped me; he did an MR enterography, and he was, like, “Tina, there’s no inflammation. I’m de-escalating you to six weeks instead of four. We can consider eight weeks down the line. But I don’t believe this was Crohn’s. I believe that you had severe inflammation that had started to act up because you were so backed up.”
Lauren: But how do they fix that though, that’s the other side of it.
Tina: With pro-motility medication. I started Trulance in June, I started domperidone, which is not approved in the United States; my motility specialist got it from Canada. And in February, she started me on Motegrity.
Lauren: So you’re on three different drugs for this.
Tina: Just to go to the bathroom. And it’s still not good; it’s still not perfect. Granted, I think being indoors has complicated things. I’m usually pretty active; I try to go to the gym to do a lot of exercises. I go for acupuncture and pelvic floor physical therapy to help manage these things. Which hasn’t been possible during this pandemic. Plus, I had a major ankle injury in the winter. So things have kind of been bad these last six months in terms of my motility, because of that.
Lauren: And you can’t just do any home exercise either. Your body has so much stuff going on, you’ve got to be very selective, being physically active. So it’s hard to change that up when you’re someone who already has limited options.
So it’s definitely been a journey. I have multiple diagnoses.
Yes, I have Crohn’s and gastroparesis, and all this functional GI stuff going on. But I also have just whole body, mess of diseases. And I feel like it’s always been a balancing act for me to juggle one chronic illness against the next, you know. It’s been hard, but I think one of the ways that I cope is by doing advocacy work.
Lauren: Absolutely. Well, let’s talk about the people who’ve been advocates for you as well. Because the two people who’ve come up in a recurring theme in this story are your mom and your husband. We’ve touched on how these experiences have affected your relationship with both of them. But given everything that you’ve experienced now, now that we’re in 2020 and in the midst of this pandemic, tell us about your relationships with them and how your conditions have affected those relationships.
Tina: So, my husband and I are obviously stuck indoors together in a tiny Manhattan apartment. I think I’m very fortunate in a lot of ways, but especially in this one way, that he and I get along really well. And I mean, yes, we’ve had tiffs and stuff over the last seven weeks that we’ve been stuck indoors together! I think any normal couple would. But in general, I think things are going well. I think he can struggle sometimes to advocate for me, but he has always been sort of my rock in the sense that he’s always been there. He doesn’t believe in leaving somebody, just because they have an illness. And it makes me believe in humanity again to see that. He has stood up for me against our culture, against a lot of people who’ve said otherwise.
Lauren: He’s had more naysayers than your typical person would. Because, as you’re saying, it’s not just the friends here or whatever, it’s also these cultural mores of your family.
Tina: Exactly. I think it’s been really hard for him to stand up oftentimes. And I think he has to do it so often, in terms of keeping this wall up around me … that is his sort of advocacy. Being that piece of the puzzle, and keeping people out and away from causing arguments between us and causing unnecessary fights, when we otherwise get along.
I’d say that’s been the biggest problem in our relationship, people saying he shouldn’t be with me.
We’ve argued over it many times. But at the end of the day, he knows what the right thing is. And he knows that should something like this, God forbid, ever happen to him, he wouldn’t want anybody doing this to him. And he’s always said that to me. Which I appreciate, because this has not been an easy journey by any means.
Lauren: No, not at all. What about your relationship with your mom?
Tina: So, my mom has always been a rock for me. I think it’s been very, very difficult for us to not see each other during this time, because she does live 50, 55 miles away. So that’s been very difficult. We’ve been trying to keep up via FaceTime as much as we can. But she’s also a caregiver to my grandparents. And my stepdad’s also part of the picture, so she’s got her plate full, so to speak. So, over the last couple of years, I’ve tried to become more independent to give her that space. Because I’ve been able to. As my disease went into remission, or in and out of remission whatever you want to call it, I’ve picked up the slack and really taken care of myself through the gastroparesis diagnosis and through everything else I’ve been through these last few years. So, she’s definitely still very much a part of my life, but especially now during the pandemic, we have to keep that distance, unfortunately.
Lauren: Absolutely. But it doesn’t change the fact that she’s obviously concerned about you, and is clearly keeping in touch with you, too.
Tina: Of course. I get emails constantly about, “Oh, do this to prevent the coronavirus.” And I’m, like, “Mom, it doesn’t work that way!” (laughs)
Lauren: Yeah, when you’re a chronic illness patient, at least, we have a little bit more know-how in terms of protecting ourselves at home or being stuck at home or, you know, disinfecting areas that we live in!
Tina: Exactly. It’s very cute, you can tell that she cares in that kind of regard. But I do get a lot of messages in that sense. But, yeah, that dynamic has definitely changed and I’ve taken more charge of my care.
Lauren: Yeah, you’ve really been your own advocate throughout this process. But you’ve had to step up a little more in the last few months, it sounds like. What’s a typical day looking like for you? Because we still don’t have clear diagnoses in every direction. I know you’re right now studying for a Master’s in Public Health. Balancing your work and your life and living around your symptoms and your diet and lifestyle management … what does that look like for you day-to-day right now?
Tina: That’s a great question. I think my routine has definitely changed. I’m really lucky that I’m not revolving around the hospital system, in the sense that I’m not constantly in and out anymore. But I do have a lot of appointments. And that’s been my reality ever since I came back from Mayo Clinic.
In order to maintain my health, I have a lot of specialists managing a variety of different illnesses and issues that I face on a regular basis.
And that’s been unusually tough during this time. Because we have to use telehealth, which I think is amazing on some levels, but not so great on others. So, my life has changed in the sense that I would have probably one doctor’s appointment a day; I usually have five to seven a week. When I say doctor’s appointments, I also mean acupuncture and pelvic floor physical therapy. Those seem to be staples in my life right now.
Lauren: Maintenance activities.
Tina: Yeah, because they help on so many levels with multiple issues. Because I have pelvic floor dysfunction from all the surgeries I’ve had, and all this constipation. So, there’s that. And acupuncture seems to help with the motility, but it also helps with allergies and migraines and sinus issues, and all of that. So I think those were really staples in my life before this pandemic started. But then I might have a bone density scan, or I might have to follow up with my rheumatologist, or … guess what, now I have a herniated disc, I need to go see my neurologist and have an MRI. So it’s constant management of something.
Lauren: And that’s what I’m curious about, too, because right now, you’re not going to any of these doctor’s appointments, you’re doing telehealth appointments. Do you think you could end up … and I don’t want to catastrophize here … but could you end up in another situation where you’re not treated like an emergency and you become an emergency again?
Lauren: So you’re really having to be hyper-vigilant right now, that if anything feels a little funky, you’re gonna have to go in — and you’re gonna have to push for it, too.
Tina: 100%. So, I’ll give you an example … I actually did go for pelvic floor physical therapy and for neck physical therapy this morning, and it was a first time in over a month. And the reason was because I was afraid I would end up in the ER. And I was, like, I’d rather go into an office that has nobody in it, where the employee’s been furloughed and is just coming in to see me to do physical therapy on me. And so that’s what I did.
Lauren: And this is why maintenance is so important, in knowing what you need. This is your version of self-care.
Tina: Exactly. I had to push for it, because I was starting to have pretty severe pelvic pain in the last couple days. And on top of that, my neck was feeling out of whack, and she said today, “Tina, I’m glad you came in; your neck’s feeling really leathery.” I’m doing the home exercises that she’s given me; I’m on top of all of that.
But there’s only so much you can manage from home that doesn’t need manual intervention.
So I really do feel like during this time, there’s going to be a lot of illness that crops up that becomes emergencies, potentially later on down the line, because people aren’t getting the care that they need early on.
Lauren: Well, because we’re only doing acute care right now. And we’re already not good at doing prevention, are we.
Lauren: That’s a lesson you’ve had to learn by being sick, as well. Psychologically, how we get our heads around this. You’ve had to buck the system in the sense that you’ve had to be, like, “No, I need this prevention.” You’ve been through that to understand it. But your average person over here who might be coming down with the first symptoms of Crohn’s might not know that yet.
Tina: Nope. I know how I have to take care of my body now because I’m very proactive, I’m very much on top of it. But even then, there’s always a pipe that’s bursting somewhere! That’s how I refer to it — because you can fix a leak, but the leak is gonna pop up somewhere else. That’s how it is with chronic illness. So I do the best I can because I’d rather go into an empty physical therapy office than end up in the ER. It’s all about sort of taking care of ourselves, and managing in between all of this. So I did the best that I could. I wore gloves. I had a mask on. I changed out of all my clothes. I took an Uber, because I did not want to take a New York City cab, nor did I want to go into the subway. So I took the Uber back and forth; this is what I needed to do for my own self-care. I need this right now. This is what I’m gonna do.
Lauren: It’s interesting, in this discussion of becoming an emergency, because you’ve been through that so many times where you’ve been brushed aside. You told us the story about the doctor who said you looked great, even though he had your stack of papers a foot high for your medical record. What about these experiences? Do you have any particular memories that you could share with us that aren’t too painful for you to regurgitate, experiences you had where you knew something was up, you looked fine on the outside, and no one would believe you?
Tina: The gastroparesis, the constipation. And you heard it, it took four years to diagnose the disease.
No one would listen to me — for the life of me.
I went to two male motility doctors last year, at two different hospital systems in New York — Cornell and NYU — and they just did not hear me! I would call and be, like, “I haven’t gone in a whole day.” Or whatever. And I wouldn’t even get a response. And I’m, like, “When is the gastric emptying study test?” Three months from now. I’m, like, “Listen to me, hear me. This is so inappropriate. You need to get me in sooner. What’s going on with me??” “Oh, you just need to keep taking Miralax. Add milk of magnesia.” It’s not cutting it!
Lauren: And these are not long-term solutions.
Tina: They’re not! And then they would act annoyed with me that I’m calling too much. And I’m, like, “Look, I am not that patient if you would give me proper solutions. I should not have to keep calling you in order to get the care that I need. This should be smoother than that. I know how this healthcare system works. And I know that when it works well, you can get things done sooner rather than later. It doesn’t have to take three months to get a procedure done or a study done. I know that by now.” And so it was very, very frustrating to me that nobody was believing me, because I had an ostomy — like you said earlier. And to have Crohn’s and gastroparesis … aren’t those two opposite things? Nobody would believe me that I was constipated with an ostomy and no colon. And then finally they were, like, “You probably have a stricture. So they’re looking for a stricture this whole time, doing scopes.
Lauren: So they didn’t even do a test. They just conjectured?
Tina: Yes. “You probably have a stricture.”
Lauren: So do something about it then.
Tina: Find it! “Oh, you probably have scar tissue that’s blocking stool from passing.” Find it!
Lauren: Find it and remove it. Like, why is this an ongoing discussion?
Tina: I have gastroparesis. Fine, but how did it get this bad?
Lauren: Well, let’s dig into that a little bit. We talked about these layers in your experience, and we’ve touched on the fact that you’re a racial, ethnic and cultural minority woman living with a stigmatized condition within your culture and within ours. What is it like having that experience, but then also seeing that experience reflected so poorly by our medical system where you’re experiencing medical bias on every single level because of it?
Tina: Every single level. If I talk about this, I think I would have to say, first of all … I don’t think they realized how educated I was on my condition. I think there’s always the shock that I see in doctors when I speak to them in an educated manner about my Crohn’s, and they’re almost, like, “You know that? You know that language, that terminology?”
Lauren: I’ve been sick for 20 years. So if I don’t know it by now …
Tina: I literally read studies. That’s what I do. When you have such a complicated case of Crohn’s, you want to be abreast of the latest cutting-edge information. I have started to get that respect from some of my doctors now.
I’ve switched a lot of my care over to women doctors, to be completely honest with you, since 2016.
My Mayo Clinic doctor and my GI at Mount Sinai, both males, they absolutely respect that I am proactive, and very well informed about my conditions. So I have had to sort of engineer the physicians that I see to be ones who respect my level of knowledge, treat me like a peer, treat me like they can speak to me and tell me like it is, how it is. That’s what I need right now. One of the things I’ve learned is, female doctors hear you. At least for me, the ones that I’ve mostly switched to have heard me. My female GI, she was hearing me, but when it came to the gastroparesis, she was not. So, I have to say and I can’t emphasize this enough, you have to find someone who can really, really listen to your symptoms. And not just listen to them, but do something about them.
Lauren: Do you think your whole experience would have been different if you’d been a white man?
Lauren: Yeah. It’s like a foregone conclusion at this point! We have the statistics. I don’t even need to ask this question, but I ask it for a reason.
Tina: And I’m glad you’re actually asking me this, because no one’s actually openly asked me that before. How would it have been different? I think I would have gotten treated with biologics much sooner. I think that I may not have had this many surgeries. I think my Crohn’s disease may not have gotten this bad. I really don’t. I don’t think I would have had all these surgeries, tried all these medications — and that my life wouldn’t be quite as disabled as it’s been had I been treated to a target therapy early on.
And I do think [if I were] a white male, they would have listened to me.
Lauren: What about your family, and extended family at this point, too, because we know that you’re living with this condition that’s highly stigmatized. Are they all fully apprised of the developments in your medical chart? Are you and your mom sharing, or are they even interested? What does that look like?
Tina: That’s a really good question. What does it look like to have all these diagnoses in my culture? It’s honestly very much taboo for me to even open my mouth and say I that have anything bigger than a small stomach ailment. In fact, when I came out with my story, just a little over two years ago through the Crohn’s & Colitis Foundation, I got so many phone calls when that story hit social media. And let me just tell you, it was social suicide for me to come out with my story. Because it was just, like, “Wait, Tina, we thought you just had a small stomach ailment.” And then I wouldn’t hear from those people again. People just kept falling off. Some of my closest friends disappeared when I started my advocacy work. There’s one other thing I need to add to this … sometimes people want to be there when you’re down, but they can’t handle it when you start to come up and speak up for yourself. And I respect that, I understand. But at the same time, sometimes when you’re building yourself back up is when you really need people, too. It was a really lonely place when I first started to advocate and started to create awareness. It was, like, “Tina, what are you doing? This is not something we talk about.” There’s even an Asian cultural phrase in Hindi and in Urdu, which means: ‘What are people going to say? What are people going to think?’ And I know in the Chinese and some of the Asian languages, they have similar phrases. Don’t say that, because what are people going to think? That’s what that question means? What are people going to think if you open your mouth and expose a flaw? Expose that you have a disease? Better just keep it under wraps.
People often get married in a lot of these cultures without disclosing that they have an ailment.
And you’re pretty much married to that person, not knowing. And to me, that’s wrong on so many levels.
Lauren: And it’s manipulative.
Tina: Absolutely. It was one of the first things I had to tell my husband when we started dating; I think I told him within the first month of dating. And I told his parents the first time I met them. It doesn’t sit well with me when these kinds of things happen. And just seeing around the world, having done some of this advocacy work now for a couple of years, I get a lot of messages — from not just Asia, but Latin America, and even parts of Africa. Even the Western world, of course, all over Europe and Australia. It’s, “Tina, you’ve exposed this huge cultural stigma around having such a stigmatized disease.” But not just that; I get messages from men and women that are different. Men can be more accepted. Whereas women with a “flaw” like this …
Lauren: It’s not a flaw, it’s just who you are.
Tina: It’s just who you are! But in a lot of cultures, it’s considered a flaw — which is unfair to us. I get a lot of messages that say, “Thank you for talking about this. This kind of awareness isn’t here. How do we do this over here? Am I going to lose my family and friends if I do this?” And I’m, like, “Yeah, probably.” It’s one of those things that I needed to do. And I alluded to this earlier … I am so fortunate to be in this country and have survived …
Lauren: The fact that you even have to say that is the unfortunate thing, isn’t it. You shouldn’t have to feel lucky to survive in this country. And that’s the fundamental issue at play here.
Tina: Even though there might have been medical malpractice.
Lauren: Might have been? I think it sounds like there definitely has been, more than once.
Tina: All these sort of issues, I’ve survived all of this. 100%, Lauren. And it’s not just survived.
I know patients in some of these other countries whose surgeries are botched and can never be fixed.
I get pictures sent to me, and thank you notes sent to me, and “How do we do this?” But not just that; it’s, “I finally found someone else like me online.” Because they can’t talk about it. I got a message today from a 23-year-old woman in a part of India, and she has colorectal cancer. She was given a colostomy. And guess what, her parents told her she can’t get married. She knows nobody with a colostomy. And she’s, like, “Thank you for doing this. And can we be friends? Because I don’t know anybody.”
Lauren: And for you, I guess, those people who maybe can’t handle it … well, you have a whole new community of people who can handle it because they’re going through similar things.
Tina: I made a whole bunch of new friends — whether they’re advocates, whether they’re patients. People who get it. As a result of my journey. And I’m happy with that, I’m happy that I can make that sort of difference. But it’s really heartbreaking to hear some of these stories from abroad, too, because it heightens what I’ve been through, too.
Lauren: And I’m sure a lot of the PTSD associated with your experiences, too. Just to swing back around also to the mental health aspect of this … because you touched on earlier how you experienced suicidal ideation in the midst of all of this confusion about diagnosis and surgeries. How about managing that mental health aspect, and the stigmatization, culturally, with that, too?
Tina: 100%. I’m so glad you brought up the mental health aspect. Very early on, in 2008 when my disease started to get very severe, my mom actually put me in therapy. And it was the best thing ever. And she started to put me in support groups. She’d be, like, “No, we have to go into the city today, Tina. Schedule your appointment for this time so that I can take you to this ostomy support group. You need this.” Even though my mom and I have had our differences culturally about ostomy, or how to treat this disease, she really pushed for my mental health. As you heard about, especially with the suicidal ideation, how she picked up the phone and got that taken care of right away with Mayo Clinic.
She really, really pushed to make sure I was being taken care of emotionally through all of this.
Because she knew how hard it was, seeing my father go through it, having been widowed at the age of 27 when my father passed away. I really look up to her for that, and for many other things. But mental health has been a priority for me side by side with the physical health concerns. I started doing therapy in 2008. I am still in therapy, all these years later; 12 years later. And not just that … in 2016, I started seeing a psychiatrist. I’ve been diagnosed with generalized anxiety disorder. Not so much depression; I think I’ve had bouts of depression, especially at my sickest points, during which time they would try to prescribe me anti-depressants. So she got involved in the picture when I started to have complications with gastroparesis and other issues around my Crohn’s and pelvic pain. That’s when my psychiatrist got involved. But before that, my GI was trying to prescribe anti-depressants, and I think it’s very important to understand that while a gastroenterologist and other specialists can really handle the physical health aspects, it’s really important to get a psychiatrist involved to really properly evaluate you. I had them evaluate me in the hospital, but it’s not the same thing, to have regular followup.
Lauren: Absolutely. That’s really key. And I’m glad that you bring that up, too. And it’s wonderful that you’re able to speak to the experiences you’ve had. Even though you’re not totally on the other side, what you’ve gained in perspective, and where you are emotionally, are a 180 compared to 2008.
Tina: 100%. I will say this also, I think, being out with my story — because this is a closet that I’ve had to come out of, literally and figuratively — being out with my story has actually helped me cope better. And it’s something that my therapist actually encouraged very much, because being in the closet was just too emotionally suppressing and it felt suffocating for me on so many levels. And now even though my friend circle has changed, even though people might be, like, “What the heck are you doing?” And I might not have the support of some people in my community … that’s fine. What I know is, in my heart of hearts, I’m doing the right thing, and what I need to do to keep myself happy and to help the world.
Lauren: So tell us a little bit more about Own Your Crohn’s. You started this in 2016?
Tina: I started Own Your Crohn’s in 2018.
Lauren: Tell us a little bit more about what’s happened since you’ve launched the blog. There have been awards, there have been appearances. Tell us about how that’s developed, and enriched your life?
Tina: It kind of just happened, honestly. It was a name that I was thinking of since 2014. I honestly wanted to get into advocacy work for a good four or five years before I actually did it. And the reason is because I had been through so many twists and turns in my journey, and I wanted to talk about them. And I really wanted to help people. I was in no place in 2014 to do that. Not just physically. I wasn’t ready to expose myself and provide that kind of vulnerability to the world, in terms of what I had gone through. I hadn’t fully digested or comprehended what had happened to me at that point. In 2014, I started talking to my husband about it. And he was, like, “Oh, no, no, Tina. My parents, our families, it’s going to be a disaster if you do this.” And I was, like, “Well, maybe down the line?” And he was, like, “We’ll see.” And in 2016, after I had come into remission, I started to run some support groups in New York City — a women’s support group, specifically for the Crohn’s & Colitis Foundation. And during that time, I saw how many women are living full lives even with this disease. Yes, not as extensive a disease as me. Fine. But they had fruitful relationships, and they weren’t afraid of having relationships. Or they weren’t chastised for being sick all the time.
It was like a whole new world had opened up to me, and I was, like … wait, why am I not treated this way?
It was eye-opening for me. And so I started to write some articles about my experience. I didn’t share them on social media. I didn’t have a blog at that time. And then went back under the covers! But in late 2017, the Crohn’s & Colitis Foundation asked me to be their Adult Honored Hero for their New York City Take Steps Walk in 2018. So they asked for my story and to interview me, and they were saying they were going to release this on social media. I was, like, uh-oh, all right. It was released, and honestly got such a huge response that I even had reporters reach out, and that’s how I started to speak and write. And I remember one of the publications said, “Well, if you want to share this article, you can share it on your blog.” I was, like, “I don’t have a blog.” And they were, like, “Okay, well, create one.” That’s kind of how Own Your Crohn’s happened! I was, like, okay, I guess it’s time to create a blog now!
Lauren: You also realized that your story was inspiring so many other people.
Tina: Yeah,. And I think I was, like, okay, now the time is right. So that’s when I started to get some freelance gigs to write and to speak. And it’s only sort of grown over the last couple of years, whether it’s by attending patient conferences, by continuing to do some volunteer work for the Crohn’s & Colitis Foundation, or speaking for the American Gastroenterological Association. I work with different non-profits — United Ostomy Associations, National Alliance for Caregiving — there are a lot of different non-profits I work with. I work with biotech — certain freelance arrangements, most of which include talking about my disease, to explain to the company and staff really what this is like to live with so that they can understand what we go through. I do a lot of that kind of work, and I also do a lot of social media advocacy, just on my own, to create that awareness. Sometimes for companies, but also sometimes just on my own blog to put my story out. I also highlight different people on my blog, sometimes from different countries, to normalize the talk around ostomies or fistulas, or Crohn’s disease in general, or ulcerative colitis or J-pouches in general, and what life is like in other countries to live with this.
So that people can feel … we’re not freaks, we’re normal people, we deserve to be loved and respected, too.
So I want to continue to do that on my blog, to highlight different stories, highlight different aspects of my own story — to really help normalize rhetoric around this disease.
Lauren: I think that’s so beautifully said. So we’re going to sort of slide into the tail end of the interview now, and I like to wrap up with a couple of Top Three lists, as you may know. I’m wondering, given all this experience you’ve had and are continuing to go through, what your top three tips might be for someone who’s in this … perhaps IBD, but chronic illness world … living with invisible chronic illness. What would you recommend to someone who’s entering that life and new to it?
Tina: I think, first of all, this is going back to our conversation around mental health … get a mental health provider on board. Get good recommendations, shop around if you need to, because the relationship has to be right with any kind of provider. So number one, get a mental health provider on board. Number two, make sure the right doctor is taking care of you. Sometimes that can change over a few years and then you need to switch doctors again.
Lauren: And that’s okay.
Tina: That’s okay! We all evolve, our cases evolve. Sometimes we need a second pair of eyes on our intestines or on whatever diseased body part we might have, to make a call. So second opinions are very important, but also it’s okay to switch doctors if you need to do so at this time. And I would say, number three … and this is really, really important to me … a lot of times, we can be agitated and take it out on our caregivers. Always show love and respect to your caregivers. It’s really, really hard on them.
Lauren: And to you. Everyone deserves it, right?
Tina: It’s really hard on us. And I think this is a journey for all of us, whoever our caregivers are, whoever the patient is. Remember, they’re in it with you, so show them that love and respect.
And demand that love and respect of them, as well.
Lauren: Really beautifully said. So, the last Top Three list. This is kind of a fun one. You’ve been to hell and back multiple times. And we’ve gone through the bad stuff. I want to get into the good stuff as we wrap this up. What are top three things in your life that gives you unbridled joy? So, these are things, that despite lifestyle adjustments, you’re unwilling to compromise on. It could be guilty pleasures, secret indulgences, maybe comfort activities … three things that fill your heart up.
Tina: Okay, so number one, I will say, is my advocacy work. I think making a difference in people’s lives has made a huge difference in mine. It’s allowed me to take the lemons of my own life and make lemonade out of them. And so I think that even though I’ve gotten so much pushback with my advocacy work, it is not just a guilty pleasure; it’s a way of life for me at this point in time. I need to do it for myself and for my community. Number two … and this is a very tough one at this time because of the pandemic that we’re living through … I really enjoy traveling. And I think that’s one of the things that I picked up again after my disease started to remit. For the first time in nine years, I went to an international destination and I went to my favorite country, Spain. I’m fluent in Spanish, and it was my major in college and I really love their culture. So, I really enjoy traveling, visiting new sites and getting to know new cultures and people, and understanding them and understanding their psychology and how things work. So, it’s something I hope to pick up again. No matter how long it takes to get through this pandemic, I hope I can pick that up again. And I’m glad I got my fill right before the pandemic. We had gone to Vienna; I was invited to a conference there. So I really hope that that’s something that’s going to happen sooner rather than later. I have a couple of invitations in the fall, too. And three … and this is kind of a difficult one, a really difficult one given my disease … I have this love/hate relationship with food, but it’s really a love one!
I really love food, and I’ve worked around my illnesses for many years with food to make it in a way that’s tasty, and still satisfactory in terms of my gut, and digestible.
I’ve had to be very creative, whether it’s been my mom involved in helping me get that nutrition and making things taste good — even though I can’t eat spicy because spicy is a huge thing in my culture. So, I think finding novel ways to still eat good, delicious food, with all these GI issues I have, is definitely one of my pleasures in life.
Lauren: I suppose now’s a good time to be experimenting in the kitchen too!
Tina: I definitely have been!
Lauren: Well, Tina, can you tell everyone where they can find you and your blog online?
Tina: Yeah, sure. You can find my blog at OwnYourCrohns.com. I’m on Facebook, Instagram and Twitter as OwnYourCrohns. You can also find me on LinkedIn as Tina Aswani Omprakash.
Lauren: Thank you so much, Tina, it’s been such an honor to hear more of your story. And to be able to give you a platform to speak more about it. It’s so important that we gain these perspectives … beyond our own experiences … which is so much of what we’ve been talking about today. And I really commend you for coming out of the closet. It’s just a gift to have your story in the world. So thank you for sharing it.
Tina: I really appreciate you saying that, Lauren. Also for highlighting certain aspects of my journey that, between the bias and the malpractice, it’s been a really tough journey. And I think we need to give more of a voice to these kinds of aspects of how women, and women of color, are treated in the medical system.
Lauren: Absolutely. That’s so much the mission of the show at this point, and I am very glad that there are advocates like you who are out there who are enabling us to see past the BS stories that we’re told. And see what’s actually going on, and be able to, if we can identify what’s happening systemically, we can start to change it. So I’m very excited to see what continues to grow out of this work. And I’m sure we’ll have you back on the show again.
Tina: Thanks so much, Lauren. This is really great. I really appreciate it.