~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...
Managing Ostomy Care in the Era of Covid-19
Many of us with chronic illnesses have struggled throughout this pandemic with accessing timely care. One issue I’ve faced is because of my gastroparesis and other functional gastrointestinal conditions (IBS, SIBO etc.) acting up, my weight has been fluctuating a lot these last several months. As a result, my stoma size has been changing every week or two. With that, I’ve suffered a lot of ostomy leaks but even more skin irritation. While I’ve worked with my ostomy nurse virtually the last couple months to get my skin issues under control, I keep thinking of my ostomate family online and how...
IFFGD #DDHChat: Nutrition for the Ileostomy – The Dietitian & Patient Perspectives
The Diet & Digestive Health (#DDHChat) Twitter chat series with the International Foundation for Gastrointestinal Disorders (IFFGD), co-host Tina Aswani Omprakash and lead host dietitian Neha D. Shah, MPH, RD, CNSC, CHES. We are excited to help to educate patients, caregivers, and others about Nutrition for the Ileostomy: The Dietitian and Patient Perspective. Recap originally published by IFFGD on October 6th, 2020: https://www.iffgd.org/blog/october-2020-ddhchat-recap.html IFFGD - introductory tweets and remarks: The views and experiences shared by our participant are their own and do...
~ OYC Trailblazers ~ Amy & Terrell: Crohn-ically Ever After
My name is Amy Btiebet Washington, I’m 34 years old and live in Ohio. I was diagnosed with Crohn’s disease when I was 26 (in 2012). Initially, I thought I had a terrible flu, but after a few days of symptoms, I was rushed to the hospital with a 106-degree fever. I was immediately treated for sepsis, which led to 5 days in the ICU. After multiple tests, I was diagnosed with Crohn’s disease. The sepsis was a result of a severe infection caused by Crohn’s disease. At the time of my diagnosis, I knew very little about the disease and didn’t know anyone who lived with Crohn’s or...
MM&M Transform Talks: Prioritizing the Patient Voice
I recently had the opportunity to work with the MM&M Transform conference on a panel discussion on Prioritizing the Patient Voice in anticipation of their conference on September 29th-30th. A panel of 3 of us patient advocates (Tonya Cherie Hegamin, Type 1 Diabetes; Teresa Johnson, Multiple Sclerosis & Heart Disease; and me, Crohn's Disease & Gastroparesis) discussed why it's so important to engage patients in healthcare discussions, from digital health to biotechnology and pharmaceuticals. At the forefront of our conversation was a topic near and dear to all 3 of us: diversity,...
COVID-19 & IBD: GI Perspectives on Fall 2020 & Beyond
Given all the chatter about COVID-19 this upcoming fall season, I thought it best to inform ourselves as patients as to what to expect. Because rates of COVID infection are so variable across the U.S., I spoke to several leading gastroenterologists around the country to get their take on what they’re recommending to their IBD patients about vaccinations, medications, surgery in addition to attending social gatherings and returning to school and/or work. The 5 IBD specialists I spoke to are located in various parts of the country and include Dr. Jordan Axelrad (Adult GI at NYU Langone Medical...
University Accommodations in the COVID-19 Era
The last few weeks have felt daunting and overwhelming as I've been battling intense floods of illness and considering whether or not to resume graduate school part-time again this fall. You see, even contemplating a graduate program was a huge undertaking for me a couple years ago when I was accepted into a Certificate of Public Health program. As I slowly mustered up the courage to transfer into the Master's in Public Health program, I felt scared yet hopeful all at once. And in between it all, I've had to take a trimester off to tend to my health. But all that aside, now we are in the...
Pelvic Floor Dysfunction in IBD ~ A Live Discussion with the Crohn’s & Colitis Foundation
Pelvic pain is far more common in inflammatory bowel disease than often discussed or addressed. In a recent live discussion with Dr. Tayyaba Ahmed (pelvic pain physiatrist at Pelvic Rehabilitation), Dr. Neilanjan Nandi (IBD specialist at Penn Medicine), Kara Mortifoglio, DPT (pelvic floor physical therapist at Solstice Physiotherapy) and me in conjunction with the Crohn's & Colitis Foundation, we discuss the various ways in which pelvic pain manifests in IBD patients. Given that pelvic pain is often confused with IBD symptoms and flare-ups, we discuss symptoms and how to get help to...
How to Vacation (or Staycation) Safely During the Pandemic
**CAUTION: ONLY TRAVEL WITH THE ADVICE OF YOUR PHYSICIAN AND IF PANDEMIC NUMBERS ARE LOW IN YOUR AREA & THE LOCATION IN WHICH YOU ARE TRAVELING. PUBLIC HEALTH & WELFARE IS EVERYONE'S RIGHT & RESPONSIBILITY** Being chronically ill and immunocompromised is hard enough, add a pandemic into the mix, and it feels impossible to get out and do the things you love. Particularly for those of us who have spent so much time in hospital beds or at home recovering from disease flare-ups and/or surgeries, that when we feel well, we want to seize the day. Seizing that moment though has been...
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: https://youtu.be/2je4SMFWw7o 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...
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....
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...
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...
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...
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...
