Pelvic pain is far more common in inflammatory bowel disease than often discussed or addressed. In a recent live discussion with Dr. Tayyaba Ahmed (pelvic pain physiatrist at Pelvic Rehabilitation), Dr. Neilanjan Nandi (IBD specialist at Penn Medicine), Kara Mortifoglio, DPT (pelvic floor physical therapist at Solstice Physiotherapy) and me in conjunction with the Crohn’s & Colitis Foundation, we discuss the various ways in which pelvic pain manifests in IBD patients. Given that pelvic pain is often confused with IBD symptoms and flare-ups, we discuss symptoms and how to get help to alleviate this pain and achieve greater quality of life. Please check out the video below to learn more:…
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- advocacy, awareness, Black Lives Matter, coping with flares, Crohn's, Disability Justice, Healthcare Disparities, Minority Health, Ostomy, Ulcerative Colitis
Black Lives Matter in the IBD Community, Too
In recent weeks, months and years, we have witnessed far too many hate crimes toward our Black brothers and sisters. It is not unknown to us that many Black bodies have been tested upon without fair pain medications, expected to endure tremendous suffering in the name of science. Within the healthcare system, not only do Black folx face significant health disparities and delays to diagnosis, they also deal with uphill battles when it comes to accessing good insurance, care and treatment options. With this blog post, I aim to shed light on the stories of 8 lovely Black inflammatory bowel disease (IBD) patients while sharing the resources of 3 die-hard…
- advocacy, Coronavirus, COVID-19, Crohn's, immunocompromised, J-Pouch, living with IBD, Ostomy, Ulcerative Colitis
Tips for Telehealth and Managing Your IBD Care During the COVID-19 Pandemic
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…
- 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~~
- 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…
