A person I admire once said, “Once you stop fighting your illness, you will allow acceptance to emerge.” I guess I had never looked at illness that way before. Society tells us to fight illness to our last breath, but is it really a fighting attitude we should have? This thought was something I began to ponder after hearing this statement. It took me months to process and understand what fighting vs. acceptance meant for my Crohn’s disease. Read more on the Healthgrades website: https://www.healthgrades.com/right-care/crohns-disease/accepting-my-crohns-disease-to-finally-become-me. Originally Published on Healthgrades.com, Written by Tina Aswani-Omprakash
- acceptance, advocacy, autoimmune disease, awareness, coping with flares, Crohn's, immunocompromised, living with IBD, Mental Health, Mindfulness
- acceptance, advocacy, chronic illness, chronic pain, Colorectal Surgery, coping with flares, Crohn's, endometriosis, extraintestinal manifestations, Irritable Bowel Syndrome, Mental Health, Pelvic Floor Dysfunction, Pelvic pain, PTSD, Ulcerative Colitis, Women's Health
When Diagnoses Accumulate – My Endometriosis Journey
Last spring, just when I had thought I had turned a corner and had many of my conditions better controlled, I developed a ton of crippling pelvic pain. Within a couple of days, I started bleeding a lot, which made no sense because I had been on hormones for years to stop my periods. Hormonal therapy was presented to me as a treatment option by Mayo Clinic’s gynecology team because I had many peritoneal inclusion cysts (scar tissue filled with fluid in my pelvis) that were wreaking havoc on my bladder before and after major surgeries done to remove my j-pouch. So, it was either hormonal suppression of ovulation or a hysterectomy at age…
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My Feature in Gastroenterology & Endoscopy News!
Very honored to have been featured in Gastro & Endo News with regard to addressing sleep issues in IBD. This is something I’ve struggled with for a long time because I often need to use the facilities overnight and have trouble falling back asleep. Learn more about sleep issues and how to help us patients by visiting the article link here: https://www.gastroendonews.com/Article/PrintArticle?ArticleId=67175 As patients, sleep can really make a difference in our care and our overall ability to take each day as it comes. If our gastroenterologists aren’t able to address sleep concerns during our appointments, it may be best to bring up to our IBD nurses, NPs or PAs to…
- advocacy, autoimmune disease, coping with flares, Crohn's, IgG4, immunocompromised, living with IBD, Mental Health, Minority Health, Sjogren's
When Diagnoses Accumulate: My Sjögren’s Story
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, 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…
- Asian American Pacific Islander Month, autoimmune disease, coping with flares, Cultural Stigma, diversity, living with IBD, Minority Health, Ulcerative Colitis, Women's Health
Demi’s Journey: Coming Out with Ulcerative Colitis as a Filipino Woman
I sat on the toilet for the tenth time that day, clueless about what was going on inside of me. For the past seven months, I had been experiencing episodes of bloody diarrhea and had yet to be diagnosed. My ass was spewing blood and I was worried that I am losing a lot of it. I thought to myself: if I were back home in the Philippines, I would probably hear someone say “Baka kinulam ka” (“Someone probably hexed you”). Filipinos, although predominantly Catholic, have their share of beliefs – both superstitious and supernatural. Kulam, a form of folk magic, is one of them. I turned 40 three months ago and…
- 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.…
- acceptance, advocacy, awareness, coping with flares, Crohn's, diversity, living with IBD, Mental Health, Minority Health, stigma, Ulcerative Colitis, Women's Health
~OYC Trailblazers~ Anisha Zumba-ing Her Way into 2021!
This blog post has been done in collaboration with Girls With Guts Community Connection. By Anisha Gangotra My name is Anisha, I’m 37 years old and I live in Buckinghamshire in the United Kingdom. I’ve lived with ulcerative colitis since 2008, from the age of 24. I experienced my first colitis symptoms following a two-week holiday abroad. My stomach hadn’t felt quite right but I’d also had my period when I was on holiday so I assumed that it was a mixture of jet lag, my body adjusting to a different environment and my menstrual cycle. I’ve always had a sensitive stomach so I didn’t think much of it. When…
- 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…
- chronic pain, Colorectal Surgery, coping with flares, Crohn's, fatigue, Pelvic pain, Ulcerative Colitis
Pain and Fatigue in IBD: Provider and Patient Perspectives
Raise your hand if you’ve dealt with chronic pain and fatigue living with IBD. Pain and fatigue are two common complaints amongst Crohn’s & ulcerative colitis patients whether disease is active or in remission. And oftentimes, it’s the least addressed or acknowledged. Many of us patients live with different types of chronic pain from abdominal pain and cramping related to disease flare-ups to post-surgical pain and pelvic pain. Some of us also tend to have pain from extraintestinal manifestations including severe joint pain and pain from dermatological manifestations (erythema nodosum, pyoderma gangrenosum, etc.). And fatigue appears to be a staple living with IBD where even if we have relief from…