As an ostomate and IBD patient, many people often ask me if I am able to play sports. I tell them ‘YES’. Yes, we can actively participate in sport activities, but there may be some restrictions. For example, Larry Nance Jr. is an NBA star who has Crohn’s disease (CD). But his illness does not prevent him from staying active. Although I am not a professional athlete, I do play sports for fun with my friends and it helps my physical and emotional well-being. However, as an ostomate and CD fighter, I have to take extra precautions while being physically active. I used to play football, badminton and volleyball before…
- Colorectal Surgery, Crohn's, hydration, living with IBD, Mental Health, Minority Health, Nutrition, Ostomy, Ulcerative Colitis, World Ostomy Day
- advocacy, autoimmune disease, Clinical Trials, Colorectal Surgery, coping with flares, Crohn's, living with IBD, Ulcerative Colitis
A Gutsy Feeling: Advocating for the Best Care Possible as IBD Patients
By Tina Aswani Omprakash **Supported by agutsyfeeling.org, a collaboration between Girls With Guts, Purdue University, College of Pharmacy, and the Academy for Continued Healthcare Learning** In today’s day and age, there are many treatment options for inflammatory bowel disease (IBD – ulcerative colitis and Crohn’s disease). But given all the new medications on the horizon, how do we as patients participate in shared decision making with our IBD specialists regarding which medication might be best for us? And how do we know when we have given the medication a fair enough shot and that it might be time to move on to the next treatment option? How do we know…
- Crohn's, Cultural Stigma, extraintestinal manifestations, feeding tube, Healthcare Disparities, living with IBD, Minority Health, Nutrition, Stigma, Women's Health, World IBD Day
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 bouts of watery diarrhea and fatigue. I was travelling…
- Asian American Pacific Islander Month, autoimmune disease, coping with flares, Cultural Stigma, diversity, living with IBD, Minority Health, Ulcerative Colitis, Women's Health
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 months ago and…
- advocacy, autoimmune disease, Colorectal Surgery, Crohn's, Dating & Relationships, Gastroparesis, invisible illness, living with IBD, Minority Health, National Minority Health Month, Ostomy, Ulcerative Colitis, Women's Health
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), and 50% of a bachata dance partnership with my husband Marcos, I am fortunate to experience…
- acceptance, advocacy, Arab American Heritage Month, awareness, coping with flares, Crohn's, Cultural Stigma, diversity, living with IBD, Mental Health, Minority Health, National Minority Health Month, Ulcerative Colitis, Women's Health
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 all got together for picnics, holidays, and gatherings.…
- autoimmune disease, Black Lives Matter, Caregiving, Coronavirus, Crohn's, Dating & Relationships, J-Pouch, living with IBD, Minority Health, Ulcerative Colitis, Women's Health
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 regardless of what was happening with…
- autoimmune disease, awareness, Coronavirus, COVID-19, Crohn's, immunocompromised, living with IBD, Minority Health, Ostomy, Ulcerative Colitis, Vaccinations
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 potential for overarching complications of contracting…
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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 I also talked about what has worked…
- Colorectal Surgery, Crohn's, Egg-Freezing, fistula, IBD Parenthood Project, living with IBD, Minority Health, Motherhood, Ostomy, Pregnancy in IBD, Ulcerative Colitis, Women's Health
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 be able to speak up for women…