One of the things I do a lot as a patient with many chronic illnesses is visit all sorts of healthcare providers for the maintenance of my care. However, during this time, when many non-essential visits to the doctor’s office or to medical facilities are not recommended, what do we do? In the last 6 weeks, many providers have ramped up a service we are now calling telehealth. That is, many doctors are offering virtual visits to us from the convenience of our home. While it isn’t the ideal way to examine a patient, it certainly gets the job sufficiently done for many of us who are struggling to manage…
- advocacy, Coronavirus, COVID-19, Crohn's, immunocompromised, J-Pouch, living with IBD, Ostomy, Ulcerative Colitis
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Extraintestinal Manifestations of IBD: An “Eye” on Episcleritis
As many of you know, I was recently in Austin, TX, traveling to speak at Crohn’s & Colitis Congress. So, when I landed in Austin, I noticed a tinge of red in my right eye and I was a bit concerned but thought it would go away. You see, the dryness of the flight does sometimes irritate my eyes. But as I spent more and more time in Austin, I realized my eyes were reacting to something in the air with construction dust constantly assaulting my eyes. At this point, I became really alarmed because I knew this could be the beginnings of episcleritis, a form of eye inflammation that…
- advocacy, awareness, Biosimilars, Canadian healthcare, coping with flares, Crohn's, fistula, Forced Medical Switching, living with IBD, Lobbying, patient rights, Ulcerative Colitis, Women's Health
Sophia’s Chronic Illness Journey: Forced Switching to Biosimilars in Canada
By Sophia Ali Khan From Diagnosis to Remission I was diagnosed with Crohn’s Disease at the tender age of seven in Calgary, Alberta in Canada. This was after I was born with congenital neutropenia, a condition that involves the deficiency of neutrophils, a type of white blood cell that plays a key role in fighting infection and inflammation. After many months of debilitating stomach pains and unexplained weight loss, I was rushed into the OR for an appendectomy, but upon examination, the doctors found Crohn’s Disease. Being of Pakistani origin, Crohn’s was unheard of so naturally my family and I had to navigate our way through a sea of diagnoses,…
- acceptance, advocacy, awareness, Clinical Trials, Crohn's, living with IBD, Ostomy, Ulcerative Colitis
How a clinical trial helped this Crohn’s advocate finally reach remission
Originally published on November 22, 2019 on Antidote’s website Like many people living with Crohn’s disease, Tina Aswani Omprakash had trouble finding a treatment that would send her symptoms into remission. After trying many of the common Crohn’s treatments on the market, she still wasn’t getting a response. She also had developed fistulas: abnormal connections between organs in the digestive tract, typically between one part of the intestines and another. That’s when her doctor suggested she join a clinical trial… To read more of this story, please visit Antidote’s website: https://www.antidote.me/blog/how-a-clinical-trial-helped-this-crohns-advocate-finally-reach-remission As always, I welcome all your thoughts, comments and feedback! Love hearing from you all! ~~LOVE,…
- Colorectal Surgery, Crohn's, Fistulizing Disease, J-Pouch, living with IBD, Ostomy, Ulcerative Colitis, Women's Health
Patient Experiences with IBD Surgery
Last winter, my husband and caregiver, Anand, and I recorded a video with the Crohn’s & Colitis Foundation on what it’s like to have surgery for Crohn’s & ulcerative colitis. We shared my experiences as a patient undergoing colorectal surgery and his experiences as my caregiver. The video was released in the last week or so. To view, check out https://youtu.be/InmqegoP-6c. Be sure to check out the entire video as there are other patient experiences included as well! So own your Crohn’s, own your colitis, and educate yourself on all the treatment options available to you and your loved ones! ?✨ ~~Love, Light & Peace Always~~
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My 9/11 Story: Paying Kindness Forward
I still remember that beautiful sunny Tuesday morning. I had just moved into the city and started my freshman year at NYU Stern School of Business a little over 2 weeks prior. I remember being in the shower getting ready for class when I heard my roommate scream, “Tina, come out here!” Half asleep still and hair soaked, I sauntered over to her television. She pointed in utter shock at the screen showing the first tower up in flames after being hit by a plane. I stood there lifeless in shock watching the breaking news unable to register that this had happened a mile and half south of me. Soon…
- awareness, Colorectal Surgery, coping with flares, Crohn's, Fistulizing Disease, Irritable Bowel Syndrome, living with IBD, Pelvic Floor Dysfunction, Pelvic pain, stigma, Ulcerative Colitis, Women's Health
Pelvic Pain in IBD: An Overlooked Complication
By Tina Aswani Omprakash, Medically Reviewed by Jenny Blair, MD Originally Published by Oshi Health, Inc., on August 8th, 2019 A complication of inflammatory bowel disease (IBD) that often goes unaddressed and misdiagnosed is chronic pelvic pain (CPP). CPP is often defined as pain in the pelvic area that isn’t cyclic and isn’t related to pregnancy and that lasts for three to six months. It may affect from 6% to 25% of reproductive-age women, depending on how it’s defined, as well as men and older women. The condition can arise from a variety of causes. How I’ve Experienced Pelvic Pain So how does CPP apply to us as IBD patients?…
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Clinical Trials: The Next Frontier for Diverse Populations of IBD Patients
According to U.S. Census expert and demographer, William H. Frey, approximately half the U.S. population will be non-Caucasian come 2045.[i] Of the total U.S. population, less than ten percent participate in clinical trials. And the number of racial and ethnic minorities partaking is an even smaller number, approximately five to fifteen percent of those who participate in clinical trials.[ii] As a woman of color living with Crohn’s Disease, I advocate for various marginalized communities (racial and ethnic minorities, LGBTQ+, etc.) suffering from chronic illnesses and disabilities. To me, the above data on clinical trials isn’t just an important set of numbers. These statistics are crucial for our future and become…
- awareness, coping with flares, Crohn's, living with IBD, Mental Health, stigma, Ulcerative Colitis, World IBD Day
~OYC Trailblazers~ Harman’s Story from India
By Harman Singh Randhawa My battle with ulcerative colitis began in 2003. I was 20 years old and in my 2nd year of studying Engineering. By the time the diagnosis came through, I had already lived with pain and inordinate trips to bathroom for more than 6 months. Ignoring my painful symptoms and the discomfort that came with it, I kept delaying getting a thorough checkup. I started experiencing bloody diarrhea for many days. Finally, it was my sister who decided that the situation had gotten out of hand and drove me to PGI Hospital in Chandigarh in Punjab, India. I underwent a few tests and when the blood test…
- advocacy, awareness, Clinical Trials, Colorectal Surgery, coping with flares, Crohn's, Disease Prevention, Emerging Therapies, living with IBD, stigma, Ulcerative Colitis
In the Name of Science & Research
Traveling home from Mayo was beyond excruciating– horrible abdominal cramping and nausea/vomiting as I could barely walk. After all the testing I had had (4 testing procedures, an ER visit, multiple appts all in 5 days) and my Stelara trough levels coming back as borderline, it was no surprise that my Crohn’s Disease had flared. I was in a frenzy and knew I had to act fast. Within an hour of landing, my local GI and I came up with a plan to admit me at my local hospital. She asked me to consider enrolling in the POWER clinical research study in which she would reinduce me with a megadose…