Posts tagged ‘crohn’s disease’
IBD Medical Terms in Plain Language
I was going through my Twitter feed the other day and came across something from Care Novate Magazine, an online resource that provides information on caregiving, social media and medical literacy. It’s a really cool idea and I spent awhile going through the site, which is how I came up with this post.
The most difficult part of living with a chronic illness like IBD is understanding what your doctors tell you. No matter how hard they try, medical jargon is still used in explanations, and a lot of the time, patients and their loved ones don’t fully understand what’s going on.
Interview with Reid of Wanted: Crohn’s End
Earlier this week, I came across WANTED: Crohn’s End on Twitter and was intrigued by the name alone. After clicking to view the profile, I learned that there’s a person behind the Twitter handle- Reid Kimball- and an exciting project to raise awareness of Crohn’s disease and the alternative methods people try to treat it.
According to its website, WANTED: Crohn’s End is a documentary about empowered patients with Crohn’s disease or ulcerative colitis who use controversial alternative treatments when nothing else works. They have listened to their gut, and took a proactive approach to ending their condition despite mainstream medicine saying there is no cure.
Below, Reid answers questions about his journey with Crohn’s, the documentary, and how you can get involved.
My Best Friend, A New Crohnie, Tells Her Story on Caring for Crohn’s
A few months ago, my best friend Julia was diagnosed with Crohn’s disease. The diagnosis, like it is for so many people, has been difficult for her to wrap her mind around. I remember how hard it was for Dan when he was first diagnosed- understanding the disease, getting used to living with it, finding trigger foods, getting on the right medications, having tons of procedures, etc. But Julia has handled it with grace, no matter how down she feels.
Julia (on the right) and I in August 2012, two months before she was diagnosed
Julia spent some time last week writing down her thoughts about being diagnosed and what its been like for her. So today’s post is written by her, a new Crohnie, on learning to live with Crohn’s disease (note: Julia is a nurse so there will probably be a lot of medical terminology in this):
I feel like this all came out of nowhere.
Crohn’s disease?
I was half-awake, half-sedated, with the 100mcg of Fentanyl and 17mg of Versed I was given for my esophagogastroduodenoscopy and colonoscopy. My gastroenterologist, who I had met that day after seeing a GI Nurse Practitioner in the office a few months prior, stands over me as I come to. He told me, in medical terms (I’m an ICU nurse) that they found ulcerations and inflammation in my terminal ileum and that he highly suspects that I have Crohn’s disease. He told my friend who was picking me up (an ER nurse herself) that I would have to have a few scripts filled and that I should start taking these medication that day. I said, “Crohn’s disease?”
He said, “Crohn’s disease.”
New Study Shows Depressive Symptoms Tied to Doubled Risk of Crohn’s in Women
A recent study published in the January issue of Clinical Gastroenterology and Hepatology shows a link between depressive symptoms and the incidence of Crohn’s disease and UC. The following information was taken from a write up on MedicalXPress.com:
Researchers from Massachusetts General Hospital and Harvard Medical School collected data from 152,461 women who participated in either the Nurses’ Health Study I or II. From the data collected, a total of 170 cases of Crohn’s and 203 cases of UC were reported from this population.
“We observed that depressive symptoms are associated with a two-fold increase in risk of CD but not UC. Although both recent (within four years) and remote (baseline) assessments of depression appear to influence disease risk, the association with recent depressive symptoms appeared more prominent,” the authors write. “Our findings support the potential importance of a biopsychosocial model in the pathogenesis of CD and suggest the need for further studies on the effect of depression and stress on immune function and regulation.”
The researchers found that women with depressive symptoms within the past four years, were more than two times more likely to be diagnosed with Crohn’s disease. However, no similar link between depressive symptoms and increased risk of UC was identified.
This is an extremely interesting development. As we all know, depression and IBD can go hand-in-hand due to the physical and mental toll the diseases take on your body. However, now there is scientific evidence that actually shows that psychological factors can contribute to developing Crohn’s disease.
You can read the full study here.
Final Installment of the ABC’s of Crohn’s & UC: “T,” “U,” “V,” “X,” & “Z”
It’s hard to believe that we’ve come to the end of the alphabet and thus the end of my ABC’s of Crohn’s & UC series. After this post, I will compiled all of the previous ones into a page on the blog so you can easily access this glossary I’ve compiled about IBD. Additionally, if I’ve missed anything important for any letter, please let me know!!! I would love to keep adding to this list and eventually turn it into something to help explain these diseases to those who are unfamiliar.
That being said, here is the final installment: T, U, V, X & Z.
Caring for Crohn’s Affordable Care Act Primer Part 3:
In the third installment of the Caring for Crohn’s Affordable Care Act Primer, I explore the aspects of the law that affect those 65 and older.
The Affordable Care Act is designed to strengthen Medicare, make preventive services affordable, and close the “donut hole” (discounts on medications that fall in the coverage gap.
Attention NYC-area IBDers: Awesome Vintage Clothing Fundraiser Feb. 18-20
I cannot tell you how excited I am to tell you about this AWESOME fundraiser next month.
My brother-in-law’s girlfriend and her twin sister have their own awesome vintage clothing line called The Vintage Twin. They rework vintage pieces. But what’s even cooler is that each piece is unique – there is only one of everything.
Well, The Vintage Twin holds pop-up shops in NYC throughout the year and gives 10 percent of the proceeds to a charity. In the past, they’ve donated to Hurricane Sandy Relief and to Autism Speaks. Well, from February 18-20, The Vintage Twin is holding their next pop-up shop and donating 10 percent of the proceeds to the Crohn’s & Colitis Foundation of America (through my annual fundraising efforts for them). This is a special event for The Vintage Twin as well because their uncle has Crohn’s Disease.
How awesome is that!
So if you live in NYC, CT, or NJ, or want an excuse to road trip out to the east coast to buy some awesome reworked pieces and give to CCFA, here are the details:
WHEN: February 18 (President’s Day) – February 20 from 12 – 9PM all three days
NOTE: I will be at it on the 18th and would love to meet all you Tri-State IBDers!
WHERE: 45 East 34th Street, 3rd floor, Between Park and Madison, NYC
Hope to see and meet a lot of you there!
Caring for Crohn’s Interviews Oak Park Behavioral Medicine
I recently had the opportunity to ask Dr. Tiffany Taft and Stephanie Horgan of Oak Park Behavioral Medicine some questions for Caring for Crohn’s and I am very excited to share the interview with everyone.
From L to R, Dr. Tiffany Taft & Stephanie Horgan
Oak Park Behavioral Medicine, located in Oak Park, Illinois, specializes in working with adults and children living with chronic medical illnesses. Dr. Taft and Stephanie are experts in the psychology of digestive illnesses, including IBS, Crohn’s Disease, Ulcerative Colitis, and Eosinophilic GI diseases, but also treat patients with other chronic illnesses.
What’s even more unique about this practice aside from the focus on treating patients with chronic illness is that both Dr. Taft and Stephanie are fellow Crohnies!
Read on to hear about their practice and how they help improve the psychological health of IBDers.
Caring for Crohn’s Affordable Care Act Primer Part 2: Insurance Choices & Costs
In this second installment of the Caring for Crohn’s Affordable Care Act Primer, I explain the provisions of the law designed to increase affordability and accessibility to health insurance.
Caring for Crohn’s Affordable Care Act Primer Part 1: Consumer Rights & Protections
The more I write and talk about the Affordable Care Act, the more I realize people actually are not that familiar with the specific details of the law. I will do my best to summarize the important parts and provide you with the implementation dates. However, for real specific questions, you should visit www.healthcare.gov– it’s an invaluable source providing all the information you could ever want on the law. It’s also where I got all of the information below from.
Because the law is so massive, I will be breaking this down into several posts by category: consumer rights and protections, insurance choices and cost, senior services, and employers. Today’s post will address provisions related to consumer rights and protections.
Caring for Crohn's & UC 