How ostomy surgery gave Tina Aswani-Omprakash her life back and the impact these surgeries can have in IBD treatment. Originally published on IBD Social Circle’s Blog It is estimated that approximately three-quarters of Crohn’s disease patients and a third of ulcerative colitis patients will need surgery at some point or another in their disease journey. What’s often not discussed enough, though, is how many of those surgeries will lead to ostomies. So, what is an ostomy and how does it help patients with inflammatory bowel disease (IBD)? According to United Ostomy Associations of America (UOAA), ostomy surgery is a lifesaving procedure. It allows bodily waste to pass into a medical…
- chronic illness, Colorectal Surgery, Crohn's, Cultural Stigma, living with IBD, Ostomy, Stigma, Ulcerative Colitis, World Ostomy Day
- 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…
- 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…
- 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…
- advocacy, autoimmune disease, Colorectal Surgery, Crohn's, Dating & Relationships, Gastroparesis, invisible illness, living with IBD, Minority Health, National Minority Health Month, Ostomy, Ulcerative Colitis, Women's Health
Bachatera with a Bag: Theodora Shattering Ostomy Stigma Through Dance
Elegance, beauty, confidence, and rhythm: these are some words used to describe a female Latin dancer. Chemistry, passion, sensuality: these often come to mind when describing or watching a Latin dance couple. Each genre of dance comes with its own culture. Dance shoes, music and certain beats accompany each genre and of course, that exists within bachata, a form of dance I love to practice. Nationally and internationally, people congregate to study, perform and/or socially dance the bachata together and there is absolutely nothing quite like it! Being a bachatera (a female bachata dancer), and 50% of a bachata dance partnership with my husband Marcos, I am fortunate to experience…
- 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
IBD Motherhood Unplugged: Womanhood Questioned by Crohn’s Disease
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, 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…