SAIA is honoured to announce that Tina Aswani-Omprakash, MPH, is now our full-time Chief Executive Officer 🎉🎉 Written by Madhura Balasubramaniam, Sharan Khela, Dr. Neilanjan Nandi & SAIA’s Board of Directors Tina is a patient advocate and thought leader par excellence, with several years of experience in spearheading international health advocacy efforts within and beyond the GI space. Tina’s work with Own Your Crohn’s has been groundbreaking for communities of colour, especially the South Asian community, where discussions around inflammatory bowel disease (IBD) have historically been clouded by cultural stigmas and misconceptions. Tina brought to light and underscored these hidden cultural considerations that shape healthcare for communities of colour across the world.…
- Crohn's, health equity, Healthcare Disparities, living with IBD, Ostomy, Patient Voice, Stigma, Ulcerative Colitis, Women's Health
- acceptance, advocacy, chronic illness, chronic pain, Colorectal Surgery, coping with flares, Crohn's, endometriosis, extraintestinal manifestations, Irritable Bowel Syndrome, Mental Health, Pelvic Floor Dysfunction, Pelvic pain, PTSD, Ulcerative Colitis, Women's Health
When Diagnoses Accumulate – My Endometriosis Journey
Last spring, just when I had thought I had turned a corner and had many of my conditions better controlled, I developed a ton of crippling pelvic pain. Within a couple of days, I started bleeding a lot, which made no sense because I had been on hormones for years to stop my periods. Hormonal therapy was presented to me as a treatment option by Mayo Clinic’s gynecology team because I had many peritoneal inclusion cysts (scar tissue filled with fluid in my pelvis) that were wreaking havoc on my bladder before and after major surgeries done to remove my j-pouch. So, it was either hormonal suppression of ovulation or a hysterectomy at age…
- Caregiving, Crohn's, Cultural Stigma, Family Planning, IBD Parenthood Project, invisible illness, living with IBD, Motherhood, Nutrition, Patient Voice, Pregnancy in IBD, Ulcerative Colitis, Women's Health
~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 known as strictures caued by Crohn’s. I had one small bowel resection in 2009. A treatment regimen, comprising Azathioprine and Mesalamine, was the cocktail my Gastroenterologist Dr. Ashok Chacko prescribed to treat my Crohn’s. In combination with a restricted and closely monitored low-fiber diet, this regimen has kept me fairly stable. It has allowed me to live alone in a foreign country, pursue…
- Coming Out, Crohn's, Dating & Relationships, diversity, LGBTQ+ health, living with IBD, Minority Health, Pride, stigma, Ulcerative Colitis, Women's Health
This Love Takes Guts
Our love isn’t simple, but it’s also the easiest feeling in the world. Being a woman in the LGBTQ+ community, I assumed that I would always have to come out over and over again throughout the course of my life. But when I was diagnosed with Crohn’s at 19 and had my first surgery at 20, I realized that I would have to come out about multiple parts of who I am for the rest of my life. It wasn’t until I found Girls with Guts in 2016 that I found a group of people that I finally didn’t have to go through the process of coming out to, at…
- 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…
-
~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 suffering from endometriosis, I was misdiagnosed with IBS and…