Are you getting ready to start an advanced therapy (for example, a biologic or small molecule medication) for the first time for your Crohn’s disease? Or perhaps this is round 2, 3, or 4 when it comes to trying advanced therapies to better manage your Crohn’s? Whether it’s your first rodeo or not, it’s important to know all the ins and outs so you can make appropriate decisions for your care in conjunction with your gastroenterologist. I have been there, and this is what I’ve learned about navigating my care and feeling empowered when getting ready to start a new therapy. Read more on the HealthGrades website: https://www.healthgrades.com/right-care/crohns-disease/what-ive-learned-about-starting-an-advanced-therapy-for-crohns-disease Originally Published on…
- autoimmune disease, chronic illness, Crohn's, Emerging Therapies, living with IBD, Ulcerative Colitis
- 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…
- autoimmune disease, Crohn's, Diet, invisible illness, living with IBD, Mental Health, Minority Health, Nutrition, Ostomy, Ulcerative Colitis
Key Takeaways from Crohn’s & Colitis Congress 2023
The Crohn’s & Colitis Congress 2023 took place last month in Denver, Colorado, bringing together more than 1,300 healthcare professionals and researchers from across the globe to share the latest advancements in inflammatory bowel disease (IBD). To summarize some of my key takeaways: **Goal is to improve patient care by halting progression of disease** So, own your Crohn’s, own your ulcerative colitis, and stay abreast of the latest and greatest research in the IBD space to advocate for your own best care! To read more about Crohn’s & Colitis Congress 2023, please visit the full blog post on the Crohn’s & Colitis Foundation’s IBDVisible Blog. As a patient advocate myself, I…
- Caregiving, Crohn's, Cultural Stigma, Family Planning, IBD Parenthood Project, invisible illness, living with IBD, Motherhood, Nutrition, Patient Voice, Pregnancy in IBD, Ulcerative Colitis, Women's Health
~OYC Trailblazers~ Tanya’s Pregnancy Journey Living with Crohn’s Disease in India
Written by Tanya Manohar My name is Tanya, and I live in Chennai, India. I was diagnosed with Crohn’s disease in 1999, a time when little was known about IBD in India. This means that I have segments of intestinal narrowing and scarring throughout my small intestine known as strictures caued by Crohn’s. I had one small bowel resection in 2009. A treatment regimen, comprising Azathioprine and Mesalamine, was the cocktail my Gastroenterologist Dr. Ashok Chacko prescribed to treat my Crohn’s. In combination with a restricted and closely monitored low-fiber diet, this regimen has kept me fairly stable. It has allowed me to live alone in a foreign country, pursue…
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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…
- acceptance, awareness, Body Positivity, Colorectal Surgery, Crohn's, Fistulizing Disease, living with IBD, Mental Health, Ostomy, Self-image, Ulcerative Colitis, Women's Health, World IBD Day
Why My IBD Scars Make Me Proud
How I learned to love what once made me shudder. By Tina Aswani Omprakash Originally published by Everyday Health on 5/17/2019: https://www.everydayhealth.com/columns/my-health-story/why-my-ibd-scars-make-me-proud/ This year’s World IBD Day theme is “Making the Invisible Visible,” and I’ve been taking a long hard look at what that means to me. The reality is that living with inflammatory bowel disease (IBD) has meant donning an invisibility cloak for most of my adult life. But over the past 14 months, I’ve striven to make my invisible illness visible. From sharing my story widely on social media to using my platform to educate others on how IBD wreaks havoc on patients like me, I’ve come to realize that visibility is necessary for…
- acceptance, advocacy, awareness, coping with flares, Crohn's, living with IBD, Ostomy, patient rights, Ulcerative Colitis
Allowing Acceptance In
Thanksgiving season is upon us, dearests! As we prepare to celebrate life, love and laughter with our families and friends, it may be tough to avoid the elephant in the room: our chronic illnesses and disabilities. As hard as this may be, we can get through the holidays together by advocating for better quality of life and allowing acceptance of our conditions in! Our bodies may not be in perfect condition but let’s be thankful today and always for the moments of health, peace and joy that shine their way into our lives. ‘Tis the season to allow acceptance to pervade our lives to cultivate more love and better self-care!…
- acceptance, advocacy, awareness, coping with flares, Crohn's, living with IBD, Ostomy, stigma, Ulcerative Colitis
My Feature During Crohn’s & Colitis Awareness Week
Pleased to announce that this year I have the honor of representing my fellow IBD warriors for Awareness Week (12/1-12/7) nationally on the Crohn’s and Colitis Foundation’s website! REPRESENT!! Inflammatory bowel disease (IBD) comes in all shapes, sizes, colors, ages, genders and sexual orientations. IBD affects 1.6 million people and counting in the U.S. alone and over 5 million worldwide. This chronic, autoimmune and often invisible condition is growing by leaps and bounds unfortunately every single year. It wreaks havoc on our guts, bodies and mental health. It behooves us to recognize and de-stigmatize IBD and chronic illness in general so that folks like us can live fuller, happier lives. I…
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Edgar Flores opens up about surviving near-death and the challenges of living with an ostomy in Mexico
Ayatka Wuikot Tlatuan is the Native American name given to Edgar Flores, a 48-year-old Mexico City native who was born into two tribes. His mother Aztec and father Apache Indian. Just over two years ago, Edgar developed appendicitis and underwent an emergency operation to remove his appendix. What happened next truly shocked him. “I thought the operation had gone smoothly, but within a few days I began to experience severe stomach pain and felt very weak,” he said. As the situation went from bad to worse, Edgar was rushed to the hospital where an ER surgeon discovered that his abdomen was filling with blood. He was hemorrhaging from the inside. Read…