April marks Sjögren’s Syndrome Awareness Month, so I thought it was high time I shared my Sjögren’s diagnosis journey now that I’m finally getting answers and treatment to deal with a condition that has been plaguing me for years. It all started in November after my laparotomy surgery. The gastroenterologist presiding over my care in Pittsburgh had noticed how much Restatis (cyclosporine for the eyes) and other eye drops I was using for dry eye and observed how often I was needing ice chips for dry mouth while I was NPO from the obstructions, the surgery and the post-op ileus. The skin on my arms and legs was also flaking…
- advocacy, autoimmune disease, coping with flares, Crohn's, IgG4, immunocompromised, living with IBD, Mental Health, Minority Health, Sjogren's
- advocacy, autoimmune disease, COVID-19, Crohn's, immunocompromised, living with IBD, Ulcerative Colitis
Dropping Mask Mandates: A Time of Anxiety or Joy?
Last week I went back to school in-person for the first time in 2 years. There was a part of me that was excited, yes, but the other part of me was nervous as all heck. Meeting professors and students I had gotten to know virtually over the semesters felt like there was a human connection again outside of Zoom! And I have to admit that I really enjoyed going to class and being around like-minded people before this pandemic started. It was definitely a loss to go virtual but at the same time, going virtual meant people with disabilities like us could take care of our health while being…
- Clinical Trials, Colorectal Surgery, Crohn's, Diet, J-Pouch, living with IBD, Mental Health, Nutrition, Ulcerative Colitis
Key Takeaways from IBD Insider 2022: Patient Updates from the Crohn’s & Colitis Congress®
Originally Published by the Crohn’s & Colitis Foundation on their IBDVisible Blog on February 14th, 2022 By: Tina Aswani Omprakash The third annual IBD Insider was, as always, a great culmination of the events from the 2022 Crohn’s & Colitis Congress®. As patients, we often have many questions about what goes on at these medical conferences and how to understand the research in bite-sized, digestible pieces (yes, pun intended). IBD Insider does just that by bringing to us the newest research updates in IBD for us to stay abreast of the latest and greatest, but also to enable us to make the best shared decisions with our physicians in our care. The…
- Colorectal Surgery, Crohn's, Gastroparesis, invisible illness, living with IBD, medical trauma, Mental Health, Ostomy, PTSD, Ulcerative Colitis
Real Talk About Recovery
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…
- autoimmune disease, Coronavirus, COVID-19, Crohn's, immunocompromised, living with IBD, Ulcerative Colitis, Vaccinations
What the IBD Community Needs to Know About Getting a COVID-19 Booster
Patient advocate Tina Aswani Omprakash spoke with gastro experts to get the booster answers for people with inflammatory bowel disease. Originally published in Everyday Health on December 1st, 2021 By Tina Aswani Omprakash For Health Answers Medically Reviewed by Kareem Sassi, MD Reviewed: December 1, 2021 Now that many of us with inflammatory bowel disease (IBD) are several months out from receiving two doses of the mRNA COVID-19 vaccines, the Centers for Disease Control and Prevention (CDC) has approved a booster dose of an mRNA COVID-19 vaccine for all adults 18 and up who received a second dose of the Pfizer or Moderna vaccine at least six months ago or the single-dose Johnson & Johnson vaccine…
- 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…
-
Gaurav’s Covid-19 Journey as a Crohn’s Patient in India
Greetings! I’m Gaurav Sengupta, a 32-year-old IBD patient advocate from India. I currently live in Kolkata and run a plastic manufacturing business of my own. I was diagnosed with Crohn’s disease back in 2015 when I was working as a Corporate Banker in the UAE. I nearly ended up in surgery back then and once again in 2019 due to stricture formation and bowel obstructions. I have been fortunate that my GI has helped to successfully control my disease during both of those flares with the help of oral steroids and immunosuppressants. I recently fell prey to the global pandemic of Covid-19 during its second wave in India. Here, I…
- 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…