**Originally published in Health Central on April 10th, 2019**
CHAPTER 1 Crashing Down
When I first began having inflammatory bowel disease (IBD) symptoms in 2005, I had just graduated college, started my first job, and I gotten out of a difficult relationship. And then, to top it off, I was diagnosed with ulcerative colitis (UC). I was at the top of my game, and everything just came crashing down in the blink of an eye.
I had also just started my master’s in financial management, but, after the diagnosis, I couldn’t complete it. With a new career on Wall Street, I took a break from my graduate education to focus on my career and health at the same time. But it was still getting to be too much at work. I was getting too sick.
I had acid reflux, and I was back and forth between constipation and diarrhea. My father passed away from colorectal cancer from Crohn’s disease when I was 8 years old, so the doctors were concerned. They were saying, “This is very aggressive in your family, you know, and you have other GI issues going on,” so they wanted a colonoscopy to figure out exactly what was happening.
My formal UC diagnosis came in June 2006. During one hot day, as I was commuting to work from New Jersey to New York City, I nearly passed out on the subway from being so dehydrated.
I was admitted to the hospital right away. That’s when my doctor finally told me that it had looked like I had mild colitis back in January. Why hadn’t they told me at the time? Now, five months later, it had progressed. It was still considered mild, but he now decided to put me on medication.
CHAPTER 2 Changing the Pace
When I went back to work, I was not the same. I was losing weight, I was definitely anemic, and I could feel the fatigue hitting hard. I couldn’t do all the things that I used to, or as much as I used to. I couldn’t work the 14-hour shifts that my job required. I don’t know if I ever really quite returned to normalcy after my UC diagnosis. I had to adjust to working fewer hours and/or getting a lot more sleep.
I also had to cut back on social activities and found myself becoming isolated from friends and colleagues. I couldn’t drink anymore or eat the same foods, so it was easier to avoid social situations. Nevertheless, I found myself in a new relationship and told him within weeks of dating that I had this diagnosis and that the disease ran fairly aggressively in my family. It was a tough pill for him to swallow, but to my surprise, he was willing to give the relationship a go.
As the summer of 2006 wore on, I continued on the medication. I switched to a new doctor who would manage me a bit more aggressively, and he helped me get my disease under control within a few months. He said there was a a possibility that I may actually have Crohn’s disease, but given the disease’s presentation, it still appeared to be UC to him. By the fall of 2006, I was doing much better on his cocktail of medications.
I continued to work on Wall Street for the next year dealing with the ups and downs of UC. In October 2007, I went to Cancun with my then-boyfriend (now husband) and came home with severe gastroenteritis. I was never the same again. Around New Years Eve of 2007, I got really, really sick. After the New Year, I didn’t go back to work.
I dropped 50 pounds in seven months and was being fed by tubes. I had my first emergency surgery on Independence Day of 2008, and I’ve had more than 20 surgeries since. After the first four surgeries, I went back to work in 2009 for another year and got married in 2010. But eventually, I reached a point where I developed chronic pouchitis, and I couldn’t sustain a Wall Street career any longer.
CHAPTER 3 Stress Test
I found that when I was stressed out, had to work late, and didn’t get enough sleep, my UC symptoms would get worse. When you have to work such long hours with so many deadlines, what happens is you don’t pay attention to if you’re eating enough, drinking enough, or hydrating enough. It can spiral out of control because if I get laser-focused on one aspect of my life — my career for instance — everything else takes a hit.
As a patient who knows her body quite well now, I’ve realized that I don’t respond well to stress. It’s one of those things where I’ve learned I have to take a step back and say, “Tina, this doesn’t have to be done right now.” I’ve had to shift my mindset toward prioritizing my health over everything else.
I manage my stress through therapy, meditation, and acupuncture. I also try to schedule in social events, even if that means having friends come over when I’m not feeling well enough to make it out. It’s important to get my mind off the disease, and other stressors in life, and focus on the people and things that make me happy.
My husband and my mom have been my primary support system and caregivers for years now. My mother was a caregiver to my father, so she’s had experience with IBD, the ostomy, and undergoing multiple surgeries. This was immensely helpful to me, and still is. Whether it was getting me back up after surgery, helping me shower, or having real conversations with me, she’s helped me feel like I am valued.
My husband has stood by my side no matter what. He remained steadfastly loyal to me even when society told him he could do better and didn’t need to tend to a wife with such serious health issues at such a young age. And even though we talked about mortality, he remained unfazed and optimistic. He believed in me and made me believe in myself.
Chronic illness can take a hit on our self-worth. Sometimes we’re not able to work or do the same things we used to. I didn’t feel like the most productive member of society because I was sick, but my my mother and my husband made me feel that it was worth me fighting for my life and surviving for their sake. They really kept me going, and they gave me reason to hang on for dear life. So much of this disease is invisible, so seeing my family advocate for me to my doctors made such a huge difference in my life as a patient struggling to make it known how much she’s struggling.
If I go to a new doctor, they’ll look at me like, “Oh, you look wonderful!” But then I think, “OK, well you need to see my insides,” and when they do, it’s a complete 180. It’s so important to have caregivers who advocate for us so that medical providers actually believe the patient when something’s going on.
CHAPTER 4 Reinventing Myself
I had my J-pouch surgery in 2009, but in the few years after that, I suffered from chronic pouchitis and developed five rectovaginal fistulae. The pouch was perpetuating the disease, and in 2011 the doctors told me, once and for all, that what I actually had was Crohn’s disease — not UC.
I tried everything I could for six years to keep the J-pouch. I had the pouch diverted and I was given another ostomy in 2012, and it didn’t work. The pouch continued to fistulize, and at that point my doctors told me I needed to have the J-pouch removed.
In early 2015, bits of the J-pouch left behind from my pouch excision surgery caused an abscess in my pelvis with another fistula heading for my tailbone. I got a second opinion at the Cleveland Clinic, where I was told that the fistula could paralyze me if it hit my spine. I was told to act quickly as I was already septic. I decided to have surgery at the Mayo Clinic, where the surgeon was able to remove the abscess with multiple surgeries, but I was in the hospital for about six weeks with a wound VAC attached to my bottom side. While the abscess dissipated, there was still a large wound; it took another month after that for the wound to finally close.
I thought I was done and could go home, but the doctor found a hole in the vaginal wall before discharge. He told me my Crohn’s disease was still laying siege and fistulizing as if my rectum was still present. I was told this was not a normal case of Crohn’s disease, and he had only seen this twice before. I was put on a clinical trial of a biologic medication in addition to an immunomodulator and antibiotics. I was discharged from the hospital in September 2015.
Coming back home from the Mayo Clinic in Minnesota after several surgeries, I didn’t know how to bring myself back to life. I had reinvented myself after the J-pouch, ostomy, and fistula surgeries, but I didn’t know how to come back from this. I had experienced significant medical and surgical trauma from this last set of surgeries, and I didn’t know how to rebuild my life and my marriage after such harrowing experiences.
So I began going to support groups with the Crohn’s and Colitis Foundation and getting involved with their events. I was struggling with who to talk to about this, because yes, my father had IBD, yes, his sister had it, but they both passed away from advanced Crohn’s disease that turned into stage 4 colorectal cancer. Others in my family who had GI issues didn’t struggle the way I had. It was hard to relate to anybody.
Come 2016, I had met so many women with my condition. That’s when I decided to create awareness by starting my own team for the Crohn’s and Colitis Take Steps Walk. I began co-facilitating the Foundation’s Women’s Support Group in September 2016. And more recently, I spearheaded the creation of a group for teenagers in New York City with two other leaders from the foundation.
It’s been very much a relief to share my story with others that have similar experiences. It doesn’t matter how severe or how mild the condition is — we can still inspire each other, we can still help each other. We’re our own community. We’re our own tribe of warriors.
CHAPTER 5 Becoming a Hero
In 2018, I was chosen to be the Adult Honored Hero for the Manhattan Take Steps Walk. One of the things that came out of sharing my story for the walk was the launch of my blog, Own Your Crohn’s, which was really hard to do because I had been private about my condition for many years.
There’s such a stigma within South-Asian Americans where we don’t talk about health conditions, especially when it comes to young, able-bodied people. Many of my friends and extended family just thought it was, you know, some tiny little stomach issue that I had. That’s what everybody would tell me. And I would never correct them.
But since the launch of my blog, I’ve continued with writing for publications and doing advocacy work, getting more involved with the foundation, and even going to D.C. to lobby for better patient care for Crohn’s and colitis. I feel like I’ve been able to make a difference, especially when I hear from other patients and caregivers who reach out to say thank you for raising awareness and giving us a voice.
I’m willing to see what the future holds for me. There are a lot of medications and research in the pipeline, and if I can be a part of the solution someday, whether it’s through blogging or something else, I want to be that to help myself and others.
One of my biggest takeaways living with Crohn’s is to celebrate every good moment, because for every bad moment, a good one will follow. There are two choices we have — two roads we can walk down: One is we can be sad about the condition, perpetually upset about it, and stay there, or we can say, “Look, I have this condition, but I’m not going to let it slow me down anymore. And, even if it does slow me down, it’s not gonna slow down or change my attitude.”
So, as I often write in my blog, “Own your Crohn’s, own your ostomy, own everything that might not fit societal norms and give it a voice. Because what knocks us down can make us stronger, fiercer and more united if we let it. “
