Gaurav’s Covid-19 Journey as a Crohn’s Patient in India
Greetings! I’m Gaurav Sengupta, a 32-year-old IBD patient advocate from India. I currently live in Kolkata and run a plastic manufacturing business of my own. I was diagnosed with Crohn’s disease back in 2015 when I was working as a Corporate Banker in the UAE. I nearly ended up in surgery back then and once again in 2019 due to stricture formation and bowel obstructions. I have been fortunate that my GI has helped to successfully control my disease during both of those flares with the help of oral steroids and immunosuppressants. I recently fell prey to the global pandemic of Covid-19...
Madhura’s Journey in India: Coping with Stigma around IBD & Feeding Tubes
My name is Madhura Balasubramaniam and I live in India. I have been locked in battle with my intestines for as long as I can remember. I spent a large part of my early childhood dealing with constant spells of stomach pain, diarrhea, vomiting and rashes. I struggled to meet my height and weight targets and had multiple nutritional deficiencies. When I was 10 years old, I was given a tentative diagnosis of celiac disease and I have been gluten-free since. While this diet seemed to provide pain relief, I remained underweight and anaemic. In mid-2018, I began to experience occasional...
Demi’s Journey: Coming Out with Ulcerative Colitis as a Filipino Woman
I sat on the toilet for the tenth time that day, clueless about what was going on inside of me. For the past seven months, I had been experiencing episodes of bloody diarrhea and had yet to be diagnosed. My ass was spewing blood and I was worried that I am losing a lot of it. I thought to myself: if I were back home in the Philippines, I would probably hear someone say "Baka kinulam ka" ("Someone probably hexed you"). Filipinos, although predominantly Catholic, have their share of beliefs - both superstitious and supernatural. Kulam, a form of folk magic, is one of them. I turned 40 three...
Bachatera with a Bag: Theodora Shattering Ostomy Stigma Through Dance
Elegance, beauty, confidence, and rhythm: these are some words used to describe a female Latin dancer. Chemistry, passion, sensuality: these often come to mind when describing or watching a Latin dance couple. Each genre of dance comes with its own culture. Dance shoes, music and certain beats accompany each genre and of course, that exists within bachata, a form of dance I love to practice. Nationally and internationally, people congregate to study, perform and/or socially dance the bachata together and there is absolutely nothing quite like it! Being a bachatera (a female bachata dancer),...
Basmah’s Journey: The Cultural Impacts of Being an Egyptian Crohnie
“You have Crohn’s Disease.” That’s what my gastroenterologist told me after my first colonoscopy in 2003. I was 16 years old, and nobody in my family, except for my mom who is a doctor, had heard of the disease.For the last 18 years, I have experienced multiple hospitalizations, taken a plethora of medications, and contended with related symptoms and illnesses such as extreme weight loss, loss of hair, C. difficile, osteoporosis, and blood clots.I am a child of immigrants from Egypt, and grew up in a tightly knit Arab Muslim community in Minnesota. I absolutely loved it (still do) when we...
Taryn’s Journey: Navigating Relationships and IBD During the Pandemic
“I think I might be at the start of a partial obstruction. What do I do?” The words I shared with my husband in late March 2020 weren’t rhetorical. It was more like I dropped a mini bomb into an already stressful situation. Even though I’ve had a series of partial bowel obstructions over the years, this time felt different. We were at the beginning of the pandemic. At a time when merely stepping outside seemed dangerous, a trip to the ER felt terrifying. In that moment, I was asking for much more than just advice. I wanted – no, needed – reassurance that...
~OYC Trailblazers~ Tanya’s Journey with an Ostomy & Endometriosis
My name is Tanya and I live with endometriosis and a permanent ileostomy. I’m of North African and Asian background from Mauritius. For years, I experienced uncomfortable bowel pains and no one could diagnose me properly. I struggled with retaining weight as all of my food would pass through me. It felt as though I was intolerant to all foods. I often found blood in my stools, and I felt permanently bloated. I eventually resorted to eating the same meals everyday to avoid upsetting my stomach. Work colleagues would notice and question why I had the same lunch everyday. Like many...
Receiving the COVID-19 Vaccine as a Patient with Several Autoimmune Conditions
I recently received both doses of the Pfizer-BioNTech COVID-19 vaccine! Many folks have been asking about my stance on it and what my experiences with it have been. First of all, I want to be clear - in line with the guidance shared by the International Organization for the Study of Inflammatory Bowel Diseases, I am without any doubt a supporter of vaccination against COVID especially as a student of public health who has learned about the immense significance of vaccines in curbing pandemics. I believe this pandemic has taken far too many lives (~500K just in the U.S.) and I think that the...
Dietary Guidance in IBD – A South Asian Approach
On March 5th, 2021, Dr. Neilanjan Nandi of Penn Medicine, Philadelphia, PA, USA, hosted Dr. Sumit Bhatia of Medanta The MediCity Hospital, Gurgaon, India as well as Neha Shah, RD, of University of San Francisco, CA, USA, and me, Crohn's & ostomy patient advocate of New York, NY. We sat down to discuss dietary guidance as provided by Dr. Bhatia along with practical tips of what South Asian foods to eat, how to customize them and how to include more protein in our diets to promote healing. Dr. Nandi also shared many important insights about diet from a South Asian American perspective and...
IBD Motherhood Unplugged: Womanhood Questioned by Crohn’s Disease
Motherhood is so much more than a word—it’s an expectation and an identity. It’s a right of passage many girls dream of when they think about their future and what their family will look like. But family planning, pregnancy, and motherhood are far from a given, especially for those with chronic illness. This week my post kicks off IBD Motherhood Unplugged, an ongoing series that will be shared on my dear friend and fellow Crohn's advocate, Natalie Hayden's blog: Lights, Camera, Crohn’s. My post has been in the works for 2+ years sitting in my drafts folder with me hoping that I'll eventually...
Key Takeaways from Crohn’s & Colitis Congress 2023
The Crohn’s & Colitis Congress 2023 took place last month in Denver, Colorado, bringing together more than 1,300 healthcare professionals and researchers from across the globe to share the latest advancements in inflammatory bowel disease (IBD). To summarize some...
~OYC Trailblazers~ Tanya’s Pregnancy Journey Living with Crohn’s Disease in India
Written by Tanya Manohar My name is Tanya, and I live in Chennai, India. I was diagnosed with Crohn’s disease in 1999, a time when little was known about IBD in India. This means that I have segments of intestinal narrowing and scarring throughout my small intestine...
A Direct-to-Patient Model: How Online Pharmacy Marley Drug is Revolutionizing Drug Pricing
Sponsored by Medicure’s Marley Drug. All thoughts & opinions are my own. As patients, have you ever wondered if forgoing health insurance could perhaps save us money on prescription drugs? I honestly hadn’t considered it and this concept blew my mind when I first...
My Feature in Gastroenterology & Endoscopy News!
Very honored to have been featured in Gastro & Endo News with regard to addressing sleep issues in IBD. This is something I've struggled with for a long time because I often need to use the facilities overnight and have trouble falling back asleep. Learn more...
7 Tips for Traveling With IBD, From Someone Who Gets It
Don’t let inflammatory bowel disease and fears of COVID-19 get in the way of your travel plans. Here’s what you need to know before you start packing. By Tina Aswani-Omprakash Summers are a time to look forward to rest, relaxation, and vacations. But for those of...
