Recovery…it’s not something we talk about enough. Surgery, like the classic Bollywood love story, takes precedence but the moment the couple gets together, they live happily ever and we never hear about the rest. Same thing with the rush and excitement of surgery. We hear all about it but the reality is we never hear about how arduous the recovery is. Today marked a month since my surgery. It was quite an emotional day for me. For those of you just tuning in, I had an emergency laparotomy due to multiple bowel obstructions from previous surgical stapling and complications caused by scar tissue and a hernia strangulating my bowel and…
- Colorectal Surgery, Crohn's, Gastroparesis, invisible illness, living with IBD, medical trauma, Mental Health, Ostomy, PTSD, Ulcerative Colitis
- 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…
- Colorectal Surgery, Crohn's, hydration, living with IBD, Mental Health, Minority Health, Nutrition, Ostomy, Ulcerative Colitis, World Ostomy Day
Saravanan’s Exercise Tips as a Crohnie & Ostomate
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…
- 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…
- 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, 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…
- 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…
- advocacy, awareness, Coronavirus, COVID-19, Crohn's, immunocompromised, Minority Health, Ulcerative Colitis, Vaccinations
South Asian IBD & COVID-19
Ten days ago, India released its two vaccines, CoviShield & Covaxin, to begin distribution to frontline workers and eventually the general population. As such, Dr. Sumit Bhatia, leading IBD specialist at Medanta – The Medicity Hospital in Gurgaon, India, and Dr. Neilanjan Nandi, esteemed IBD specialist at the University of Pennsylvania, Philadelphia, PA, USA, joined me on the FITWITMD Facebook page for a live discussion to explain the two vaccines in India along with the two mRNA vaccines in much of the Western world. The purpose of this discussion was to understand how COVID is affecting the IBD population and to address vaccine hesitancy in the global South Asian IBD…
- Crohn's, Healthcare Disparities, living with IBD, Mental Health, Minority Health, Ulcerative Colitis
Patients’ Journey Through Inflammatory Bowel Disease (IBD): A Qualitative Study
Tina Aswani Omprakash, Norelle Reilly, Jan Bhagwakar, Jeanette Carrell, Kristina Woodburn, Abby Breyer, Frances Close, Gabriel Wong, PATIENTS’ JOURNEY THROUGH INFLAMMATORY BOWEL DISEASE (IBD): A QUALITATIVE STUDY, Inflammatory Bowel Diseases, Volume 27, Issue Supplement_1, January 2021, Pages S53–S54, https://doi.org/10.1093/ibd/izaa347.127 **Abstract originally published in the Crohn’s & Colitis Foundation’s journal Inflammatory Bowel Diseases on January 21st, 2021 and presented at Crohn’s & Colitis Congress. Research study sponsored by Genentech & led by patient advocate Tina Aswani Omprakash of Icahn School of Medicine at Mount Sinai** I’m proud to announce the first patient advocate led study in the IBD space! Please view the above downloadable poster and link to the abstract for the results…