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…
- Crohn's, Cultural Stigma, extraintestinal manifestations, feeding tube, Healthcare Disparities, living with IBD, Minority Health, Nutrition, Stigma, Women's Health, World IBD Day
- 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…
- 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…
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~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…
- 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…
- 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…
- Body Positivity, cervical cancer, Dating & Relationships, diversity, Mental Health, Minority Health, Ostomy, Self-image, stigma, Women's Health
~OYC Trailblazers~ Jennylyn’s Ostomy Love Story in the Philippines
My name is Jennylyn Ajes and I’m 32 years old from Laguna, Phillippines. In 2018, I was diagnosed with stage 2b cervical cancer, which means I had a tumor that had grown beyond the cervix and uterus.[1] During this time, I had undergone chemotherapy, radiation therapy and brachytherapy. I had to do these therapies for 5 months total and none of it was easy. The brachytherapy required internal radiation therapy to get to the source of the cancer and try to wipe it out. I felt fine for the first 3 months after treatment but I really struggled with my confidence losing most of my hair and eyebrows due to…
- advocacy, Colorectal Surgery, Crohn's, fistula, Fistulizing Disease, J-Pouch, Mental Health, Minority Health, Ostomy, Self-image, stigma, Ulcerative Colitis, Women's Health
FitWitMD’s Live Discussion on Perianal Fistulizing Crohn’s Disease
A couple weeks ago, esteemed IBD specialist, Dr. Neilanjan Nandi (@fitwitmd) of Penn Medicine, hosted a live discussion with me on my experiences around Perianal Fistulizing Crohn’s Disease. We opened up the discussion to an international audience and allowed for a Q&A on this very deeply stigmatized topic that’s often not discussed or understood very well. To view the video, please watch here: I have been very open about my struggles with multiple fistulae in female parts. I have lived with 5 rectovaginal fistulae and 1 pelvic transphinteric fistula that was headed to break through at the site of my tailbone, nearly paralyzing me. To read more about my experiences,…
- advocacy, awareness, Black Lives Matter, coping with flares, Crohn's, Disability Justice, Healthcare Disparities, Minority Health, Ostomy, Ulcerative Colitis
Black Lives Matter in the IBD Community, Too
In recent weeks, months and years, we have witnessed far too many hate crimes toward our Black brothers and sisters. It is not unknown to us that many Black bodies have been tested upon without fair pain medications, expected to endure tremendous suffering in the name of science. Within the healthcare system, not only do Black folx face significant health disparities and delays to diagnosis, they also deal with uphill battles when it comes to accessing good insurance, care and treatment options. With this blog post, I aim to shed light on the stories of 8 lovely Black inflammatory bowel disease (IBD) patients while sharing the resources of 3 die-hard…
- Ableism, acceptance, advocacy, Crohn's, Dating & Relationships, Disability Justice, Minority Health, stigma, Ulcerative Colitis
I am NOT a Burden: A South Asian Perspective
The recent advice column in the NY Times called “Is it OK to Dump Him Because of His Medical Condition?” has been percolating in our minds for the last few weeks. Tomorrow, July 2nd, 2020, marks 10 years since I’ve been married to the love of my life, Anand. Yes, you read that right: one whole decade of wedded bliss and 14 years of us being together. (See Love Knows No Disability.) I still vividly remember telling him 3 weeks into us dating that I had been diagnosed with inflammatory bowel disease (IBD) a few short months earlier and that the disease had taken the lives of my father and…