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…
- Asian American Pacific Islander Month, autoimmune disease, coping with flares, Cultural Stigma, diversity, living with IBD, Minority Health, Ulcerative Colitis, Women's Health
- 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…
- Clinical Trials, Crohn's, Digital Healthcare Innovations, Emerging Therapies, living with IBD, Ulcerative Colitis, Wireless Drug Delivery
Incredible Innovations: A Brand New Wireless IBD Medication Delivery Solution
Sponsored by Veloce Corporation – SmartTab. All thoughts & opinions are my own. As a Crohn’s patient for the last 15 years, I’ve done my fair share of taking oral medications, receiving infusions and giving myself subcutaneous injections. So last summer, when I came across a digital health company called SmartTab, I was fascinated to learn about the wireless drug delivery solutions they are working on to change the way we take and absorb medications. After having done a lot of research and seeing the buzz at Crohn’s & Colitis Congress ’21 on SmartTab’s poster session, I thought it’s now high time to share this technology with the IBD patient…
- awareness, Crohn's, Fistulizing Disease, Healthcare Disparities, Minority Health, Ostomy, stigma, Ulcerative Colitis
Being South Asian American & Living with IBD
Originally published on February 2nd, 2021 on the Crohn’s & Colitis Foundation’s IBDVisible Blog: https://www.crohnscolitisfoundation.org/blog/being-south-asian-american-living-with-ibd By: Tina Aswani Omprakash I was 22 years old when I was first diagnosed with inflammatory bowel disease (IBD). I felt very isolated as a young South Asian American woman, unable to relate to those around me who were healthy and able-bodied. Even though this disease runs in my family, there was very little knowledge about Crohn’s disease or willingness to discuss my journey. Not only was my diagnosis delayed from my teenage years, due to a lack of understanding of extraintestinal manifestations (in my case, joint pains, ocular inflammation, dermatological issues), but once I did get a diagnosis, many healthcare…
- acceptance, advocacy, awareness, coping with flares, Crohn's, diversity, living with IBD, Mental Health, Minority Health, stigma, Ulcerative Colitis, Women's Health
~OYC Trailblazers~ Anisha Zumba-ing Her Way into 2021!
This blog post has been done in collaboration with Girls With Guts Community Connection. By Anisha Gangotra My name is Anisha, I’m 37 years old and I live in Buckinghamshire in the United Kingdom. I’ve lived with ulcerative colitis since 2008, from the age of 24. I experienced my first colitis symptoms following a two-week holiday abroad. My stomach hadn’t felt quite right but I’d also had my period when I was on holiday so I assumed that it was a mixture of jet lag, my body adjusting to a different environment and my menstrual cycle. I’ve always had a sensitive stomach so I didn’t think much of it. When…