Throwback to the summer of 2006 at La Caverna in New York City, just a few months after my IBD diagnosis when I was 22 (you can literally see how pale and anemic I was). My buddy, Sunil, and I were always the ultimate dance partners wil’in out on the dance floor. Some really fun times that I’m glad I had the chance to enjoy back then. Fast forward 12 years along with countless medications and surgeries, here Sunil and I are again at La Caverna. This time with our amazing husbands recreating dance moves from our college days. As friends for many years, we have come a long way…
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- acceptance, advocacy, awareness, Colorectal Surgery, coping with flare, Crohn's, living with IBD, Ostomy, patient rights, stigma, Ulcerative Colitis
The Value of Support Groups
In a world where medical professionals have only a few minutes to go over a whole slew of symptoms, medication interactions, and surgical complications, it is impossible to cover the psychosocial aspects of one’s condition(s). These aspects include methods of coping with the emotional roller coaster of living with inflammatory bowel disease (IBD).This is where support groups come into the picture. They fill that gap between doctor-patient interactions and provide real-time support and understanding to patients caught in the rigmarole of hospital visits, health insurance, and invasive testing. But more than this, the true value of support groups lies in empowering patients by fostering lifelong friendships through a deep understanding of…
- acceptance, awareness, Colorectal Surgery, coping with flare, Crohn's, living with IBD, Ostomy, stigma, Ulcerative Colitis
Metamorphosis
This past weekend marked 3 years since my series of surgeries at the Mayo Clinic in Minnesota. That trial was my greatest test to date. 3 surgeries back to back to clean out remnants of j-pouch, rectum and anal sphincter that left behind a wound the size of a small football. From daunting saltwater whirlpools, Jackson-Pratt drains, Hydrogen Peroxide flushes into my pelvis, a wound VAC and procedures under sedation every other day to clean out the wound. I was on 6 different painkillers and I was barely hanging on for life. In the months prior, I had drains galore, one from my back down my leg with a bag…
- acceptance, advocacy, awareness, Crohn's, living with IBD, Ostomy, patient rights, stigma, Ulcerative Colitis
Being Brown and Coming Out of the IBD Closet: The Chronic Illness Experience
***Originally published in Brown Girl Magazine on August 2nd, 2018: https://www.browngirlmagazine.com/2018/08/being-brown-coming-out-ibd-closet/*** Just as soon as he landed from India, a good friend called me, half laughing: “Tina, I know exactly what it feels like to be you now! I’ve had diarrhea for the last three weeks after eating at Elco Market in Mumbai! What do I do?” Another time when I was deathly ill, languishing from anemia, malnutrition and weight loss due to 20-30 bloody bowel movements a day, I remember the aunties ridiculing me. They would cackle behind my back as they proclaimed that I did this to myself. “She must have eaten lots of junk food and drank…
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The Hydration Challenge
We all know the feeling of waking up to our legs cramping, and our voices barely squeezing out a faint peep as an intense lightheadedness sets in. These symptoms, among others, are classic indications of dehydration. And with summer now in full swing, it is high time we talk about the importance of hydration. So, why does dehydration happen and why is it so important to stay hydrated as an IBD patient? According to the Mayo Clinic, “dehydration occurs when you use or lose more fluid than you take in, and your body doesn’t have enough water and other fluids to carry out its normal functions.” Dehydration comes into…
- awareness, coping with flares, Crohn's, Independence Day, living with IBD, Ostomy, stigma, Ulcerative Colitis
My Very Own Independence Day
Today, Independence Day 2018, marks 10 years since my colon and rectum were removed in emergency. I was 24 years old, 85 lbs, being fed by a PICC line and the hair on my head was greying from malnutrition. I was dying from IBD my doctors warned me as they urged me to have surgery. I remember that day so clearly when my then boyfriend/now husband, Anand, along with my close friend, Radhika, drove me into the city to have emergency surgery. And when my surgeon came up to me in the emergency room, he expressed that I may be too far-gone, that he was…
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The Waiting Game
Does nail-biting anxiety wash over you as you await results after a colonoscopy, MRI, or CT scan? Or restlessness while waiting for your latest round of biologics to start kicking in? Yeah, me too. I sit here today twiddling my thumbs endlessly as I await my ileoscopy and upper endoscopy biopsies from last week. This form of anxiety is all part of the waiting game. We patients live in constant agony while test results are pending, especially when a definitive diagnosis depends on those results. We worry as we take dose after dose of the latest round of immunosuppressants, earnestly hoping that this medication will be “it” — remission, finally. These feelings…
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MC Capital T Reppin’ from the BK Walk!
Thanks to the Crohn’s & Colitis Foundation for the opportunity to serve my fellow IBDers by sharing my experiences as well as introducing past and present Honored Heroes at the Brooklyn Take Steps Walk. Hats off to all of you for being brave enough to share how miserable these diseases are and how you are working to transcend #IBD. And a special thank you to all the doctors/surgeons and Lyfebulb for coming out to support us patients in our struggle! Even though I look well in the above photo, after the walk, I quickly deteriorated. I was dehydrated, had trouble breathing and had a partial bowel obstruction. Luckily, the Foundation…
- acceptance, advocacy, awareness, coping with flares, Crohn's, living with IBD, Ostomy, stigma, Ulcerative Colitis
12 News to Your Health IBD Segment
My TV debut with News 12 NJ! I discuss having inflammatory bowel disease (IBD) and ostomy surgery alongside Rosemarie Golombos, Executive Director of the NJ Chapter of the Crohn’s and Colitis Foundation. Thank you, Prashanthi Musapet, for the special segment and for helping to create awareness and acceptance for these awful diseases!
- acceptance, awareness, caregivers, colorectal cancer, coping with flares, Crohn's, Father's Day, living with IBD, patient rights, stigma, Ulcerative Colitis
Honoring My Late Father
(Daddy at his Doctoral Commencement at Columbia University in the ’70s.) This Father’s Day I honor all fathers. I especially honor my father who devoted his life to the sciences and to his family. He toiled endlessly until the very last minute working until he couldn’t anymore all to ensure his wife and daughters could get by without him. Not a day goes by that I don’t wonder how much better life would have been if he could have lived to see his girls all grown up. ? His battle with Crohn’s and later colorectal cancer may have taken his life but he has become my inspiration to fight incessantly for my…
