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~~
- Colorectal Surgery, Crohn's, Fistulizing Disease, J-Pouch, living with IBD, Ostomy, Ulcerative Colitis, Women's Health
- acceptance, awareness, Body Positivity, Colorectal Surgery, coping with flares, Crohn's, Dating & Relationships, Egg-Freezing, J-Pouch, living with IBD, Ostomy, Pregnancy in IBD, Ulcerative Colitis, Women's Health
~OYC TRAILBLAZERS~ Katie’s Story: Baby-Making Prospects & Egg-Freezing with a J-Pouch
A Nursing Student Tells OYC Her J-Pouch Story and How That Led to Her Courageous Decision to Freeze Her Eggs to Someday Have Children. By Katie Gene Friedman When I was first diagnosed with ulcerative colitis in my senior year of college, my colitis responded to medication and didn’t take up much of my life. Consequently, I only disclosed my diagnosis to my then boyfriend, best friend, and immediate family. During a bad flare and particularly stressful semester in grad school studying social psychology, that group expanded to include the nucleus of my social circle and some professors. At that point, my disease affected what I was doing but not…
- advocacy, awareness, Body Positivity, coping with flares, Crohn's, Diet, J-Pouch, living with IBD, Ostomy, Pelvic Floor Dysfunction, Self-image, Ulcerative Colitis, Women's Health
Weekend Long IBD Retreat Helped Me to Own My Crohn’s
Everyday Health blogger Tina Aswani Omprakash details her experience on a weekend-long retreat for women living with IBDs.
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Summer of Activism: IBD Advocates You Should Follow on Social Media
Originally published by Amber Tresca on August 6th, 2019: http://aboutibd.com/2019/08/06/summer-of-activism-ibd-advocates-you-should-follow-on-social-media/ Improving the quality of life for people with inflammatory bowel disease (IBD) takes commitment and focus to understanding the issues affecting patients and caregivers. Real change means engaging with all stakeholders, including physicians, industry, and government, as well as patients and caregivers. A future that includes more effective treatments and compassionate care for those touched by IBD will only happen when those who have the best interests of patients at heart take their seat at the table. There are many activists in the IBD community that are doing this hard work and you can strengthen their achievements by amplifying their…
- acceptance, awareness, Colorectal Surgery, coping with flares, Crohn's, living with IBD, Mental Health, PTSD, Stigma, Ulcerative Colitis, Women's Health
World PTSD Day 2019: The Faceless Woman
In honor of World PTSD Day today, I release a poem I wrote some weeks ago surrounding the medical trauma I’ve faced as a Crohn’s patient. This poem is not for the faint of heart so I will not be offended if you cannot read it. Post-traumatic stress is a term that’s often thrown around lightly but it has serious implications for people who have been in battle for their country, for their lives and against chronic illnesses. Everyday is a minefield with an array of flashbacks and memories that keep us from living our best lives. I urge you all to learn more and to respond to those who…
- advocacy, awareness, Colorectal Surgery, Crohn's, Fistulizing Disease, J-Pouch, living with IBD, Ostomy, Ulcerative Colitis, Women's Health
J-Pouch Failure – Tina’s Story
Originally published by Amber of Colitis Ninja on June 12, 2019: https://colitisninja.com/2019/06/j-pouch-failure-tinas-story/ J-POUCH TAKEDOWN ANNIVERSARY Next month is my 5 year takedown anniversary for my j-pouch. I have stated many times that the j-pouch has a 94-96% success rate. But you don’t hear many success stories on the internet because most of them are out there living their lives and not boasting about it on the internet. Because you don’t hear a majority of the success stories out there, I feel compelled to keep sharing my own story of life with a j-pouch. SUCCESS & FAILURE STORIES I have given a lot of thought to how I would address this year’s takedown anniversary. I thought…
- advocacy, awareness, Colorectal Surgery, Crohn's, Emerging Therapies, Fistulizing Disease, living with IBD, Ostomy, Ulcerative Colitis, Women's Health
Fistulas: What You Need to Know About a Common Side Effect of Crohn’s
By Padma Nagappan Medically Reviewed by Kareem Sassi, MD Originally published by Everyday Health on May 14th, 2019: https://www.everydayhealth.com/crohns-disease/symptoms/fistulas-common-crohns-side-effect-you-should-aware/ Fistulas are an abnormal connection between two body parts. In Crohn’s patients they form as tunnels within the walls of the intestine and connect to other organs or tissue, causing pain and infection. After years of living in intense pain and going through several misdiagnoses, Tina Aswani Omprakash, found out she had Crohn’s disease. Her condition was so severe that she needed emergency proctocolectomy surgery (removal of the colon and rectum), and she was put on biologics. “I knew Crohn’s was an intense disease, but I did not realize what it takes to really, truly fight…
- Colorectal Surgery, coping with flares, Crohn's, IBD Parenthood Project, living with IBD, Mental Health, Mother's Day, Ostomy, Pregnancy in IBD, Ulcerative Colitis, Women's Health
~OYC Trailblazers~ Brandi’s Journey into Motherhood with a Redone J-Pouch
By Brandi Fliegel I was 22 years old when I went to the emergency room for the first time. I had extreme stomach pain and couldn’t stop going to the bathroom. They told me I had a stomach virus and sent me home with some Imodium. Then the bleeding started. I went to a different hospital and after further testing, they diagnosed me with ulcerative colitis. I didn’t really understand the disease at the time. I just knew I had to take medications to combat inflammation in the gut everyday. Then the flare-ups began and I would end up back in the hospital. I would go on steroids and then…
- advocacy, awareness, colorectal cancer, Colorectal Surgery, Crohn's, Fistulizing Disease, living with IBD, Mental Health, Ostomy, stigma, Ulcerative Colitis
The Top 10 IBD Blogs to Follow in 2019
Discussing bowel movements is undoubtedly a taboo subject for many people, which has helped a stigma form around Inflammatory Bowel Disease (IBD). For people living with IBD, most commonly in the form of Crohn’s Disease or Ulcerative Colitis, ‘embarrassment’, ‘shame’, and ‘isolation’ are regularly used words to describe the emotional strain that accompanies the physical symptoms of their condition. These bloggers, each excelling in particular areas, write openly and honestly about the realities of life with IBD. In doing so, they are helping create a community that offers support, raise awareness that helps tackle the stigma, and provide practical tips for various walks of life. Top IBD Blogs for Real…
- advocacy, Crohn's, Fistulizing Disease, living with IBD, Mental Health, Ostomy, stigma, Ulcerative Colitis
My Perianal Disease Feature at Crohn’s & Colitis Congress 2019
As many of you may have seen on my social media accounts this last month, Crohn’s & Colitis Congress is a premier conference that discusses all the latest breakthroughs in inflammatory bowel disease. I had the honor of taking part in one of the breakout sessions called Management of Complicated IBD: Perianal Disease. During this panel discussion, I shared my experiences with perianal fistulizing Crohn’s Disease and the psychosocial toll it wreaked on my entire being as a woman, as a professional and as a wife. As terrifying as sharing my horrific experience with perianal disease was, it was absolutely validating and felt like a huge weight off my shoulders.…