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…
- 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
- awareness, Crohn's, Fistulizing Disease, Healthcare Disparities, Minority Health, Ostomy, stigma, Ulcerative Colitis
Being South Asian American & Living with IBD
Originally published on February 2nd, 2021 on the Crohn’s & Colitis Foundation’s IBDVisible Blog: https://www.crohnscolitisfoundation.org/blog/being-south-asian-american-living-with-ibd By: Tina Aswani Omprakash I was 22 years old when I was first diagnosed with inflammatory bowel disease (IBD). I felt very isolated as a young South Asian American woman, unable to relate to those around me who were healthy and able-bodied. Even though this disease runs in my family, there was very little knowledge about Crohn’s disease or willingness to discuss my journey. Not only was my diagnosis delayed from my teenage years, due to a lack of understanding of extraintestinal manifestations (in my case, joint pains, ocular inflammation, dermatological issues), but once I did get a diagnosis, many healthcare…
- Coronavirus, COVID-19, Crohn's, immunocompromised, J-Pouch, Minority Health, Ostomy, Pregnancy in IBD, Ulcerative Colitis, Vaccinations
Demystifying the COVID Vaccine for IBD Patients
By Tina Aswani Omprakash Originally published in Everyday Health on January 8th, 2021 We open the new year with hope after a dreary year filled with ups and downs from the COVID-19 pandemic. As a woman with Crohn’s disease, a type of inflammatory bowel disease (IBD), I have been practicing every precaution recommended by my doctor, from masking up to practicing social distancing and avoiding crowded, indoor spaces. While I’m used to being home a lot as a result of surgeries related to my disease and regular flare-ups, the pandemic was doubly hard for me because I have been in remission, and in good health to go out and about.…
- Complementary & Alternative Medicine, Coronavirus, COVID-19, Crohn's, Diet, IBD Parenthood Project, Nutrition, Ostomy, Pregnancy in IBD, Ulcerative Colitis, Vaccinations
AIBD 2020: Hot Topics for IBD Patients
This year’s Advances in IBD conference was my first time attending and it sure as heck did not disappoint! AIBD may have been virtual due to the ongoing pandemic but it was nevertheless very well-organized and informative. The sessions shared many important studies and topics for us to learn and know all about. As a patient advocate who was sharing information across platforms, there were several topics buzzing in the IBD patient community around the world. Below are my picks for the top highlights from AIBD for IBD patients: COVID-19 & IBD According to the SECURE-IBD registry, IBD patients are not necessarily at greater risk of contracting COVID-19. Rates of…
- Colorectal Surgery, coping with flares, Crohn's, J-Pouch, Kock Pouch, living with IBD, Ostomy, Ulcerative Colitis, Women's Health
~OYC Trailblazers~ Mara Living Her Best Life with a Kock Pouch in Germany
My name is Mara and I am from a small state in Germany called Bremen. I was diagnosed with inflammatory bowel disease in 2016 when I was 21. Shortly after my diagnosis, I celebrated my 22nd birthday. I am pursuing my Ph.D. in Marine Microbiology working to learn more about unknown microorganisms found on the seafloor. One week after handing in my Bachelor’s thesis, I became severely ill with sudden and bloody diarrhea. I could not leave the toilet at all. A few days after having these initial symptoms, I was admitted to the hospital. The verdict was clear: I was diagnosed with ulcerative colitis. I thought this would be…
- 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…
- colorectal cancer, Colorectal Surgery, Coronavirus, COVID-19, Crohn's, immunocompromised, Ostomy, Ostomy Awareness Day, Ulcerative Colitis
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 you all may be handling your ostomy care in…
- Colorectal Surgery, Crohn's, Diet, living with IBD, Nutrition, Ostomy, Ostomy Awareness Day, Ulcerative Colitis
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 not reflect the official positions of IFFGD. Each patient is different. Always consult with your health care provider or a registered dietitian (RD) on a diet treatment plan…
- Coronavirus, COVID-19, Crohn's, immunocompromised, living with IBD, Mental Health, Ostomy, Ulcerative Colitis
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 next to impossible during the COVID-19 era. This…
- 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,…