Posts tagged ‘uc’
Guest Post: Living with an Ostomy
I am about a month in to my new job and sadly, life hasn’t settled down enough for me to get back into the blogging swing of things. Therefore I bring you another AWESOME guest post to bridge the gap while I am unable to post.
As I wrote earlier this month, I got to meet Stephanie Hughes at the Virginia Wine Country Half Marathon where we were both participating and fundraising for Team Challenge, CCFA’s endurance training program. I read Stephanie’s blog, The Stolen Colon, and loved how positive she was (she’s also pretty funny- check out her Ode to a Rectum). So I was extremely excited to meet her and get to know her (and find out how similar we are).
Stephanie and I before the half marathon
Some quick background on Stephanie: she was diagnosed with Crohn’s disease in 1999 when she was 13. After battling with the disease for over a decade, Stephanie had most of her colon removed on May 7, 2012 and was given a permanent ostomy. And just two days after our half marathon, on June 3, Stephanie had the rest of her colon removed.
Below Stephanie talks about living life everyday with an ostomy.
CCFA Releases Research Progress & Goals
Today, the Crohn’s & Colitis Foundation of America released its “Challenges in IBD Research” report outlining what’s been accomplished in the field of research over the past five years and what they hope to accomplish in the future. The last report was released in 2008 and since then, lots has been accomplished in the field of research.
The previous report detailed findings from 2004-2008, including the identification of genes for IBD; a better understanding of the relationship between the immune system and gut bacteria; the discovery of cells that drive and regulate immune responses; and a better understanding of how the immune system keeps stability in the lining of the gut. All of the below information has been pulled from the study’s Lay Summary.
Guest Post: The Silent Battle Before an Ostomy
Today’s post comes from Brian Greenberg, the man behind the Intense Intestine’s Foundation. Brian has battled Crohn’s disease for years and, two-and-a-half years ago, became an ostomate. Despite having an ileostomy, Brian refuses to let his disease get in the way of his love for the outdoors and life. Below he talks about the internal struggle many patients go through prior to getting an ostomy.
Birthright Israel Trip for People with IBD!
Are you Jewish? Have you ever been to Israel on an organized trip?
Well I’ve got some awesome news for you!
Amazing Israel, a division of Jerusalem-based Routes Travel, is organizing a FREE Birthright Israel trip for people ages 18-26 who have inflammatory bowel disease.
If you have IBD, you know how stressful traveling can be. This trip is made to accommodate the needs of those with IBD while not missing out on any of the sights- the Old City and Western Wall in Jerusalem, Independence Hall in Tel Aviv, the Sea of Galilee and Golan Heights, Masada, the Dead Sea, the Negev Desert, and Mediterranean beaches.
To qualify for the trip you need to be Jewish, going to Israel on an organized trip for the first time, between 18 and 26 and have a doctor’s note or other medical proof of your IBD.
For more information, visit Amazing Israel online or contact Rachel Nissim at rachel@routestravel.com.
It’s New York’s Turn to Pass the Restroom Access Act
Last year, Massachusetts became the 13th state to enact the Restroom Access Act, joining the ranks of Colorado, Connecticut, Illinois, Kentucky, Michigan, Minnesota, Ohio, Oregon, Tennessee, Texas, Wisconsin and Washington. As I wrote previously, the Restroom Access Act requires retail establishments to allow people with certain medical conditions (including Crohn’s disease and ulcerative colitis) access to their employee only restrooms if a public one isn’t available.
Several other states are starting to look at enacting the Restroom Access Act, including New York. It’s about time!
The New York bill was introduced by Assemblywoman Amy Paulin and referred to the Assembly Health Committee. Unfortunately, it hasn’t made any movement in that committee since it was referred there in February.
Running for a Cure
For the past several years, I’ve heard amazing stories about people participating in the Crohn’s and Colitis Foundation of America‘s Team Challenge half marathon program. For those who don’t know, Team Challenge is a half marathon training and fundraising program. Team Challenge participants “train with professional coaches and like-minded teammates for a rewarding and exciting 13.1 mile endurance event at one of our great destination races while raising vital funds for research into these diseases. Funds raised help make new treatments possible and fuel the search for cures.”
REMINDER: Next Week, NYC Open Bar/Pop-Up Shop to Benefit the Crohn’s & Colitis Foundation of America
Do you like alcohol and vintage clothes? Live in the NYC area?
If so, make sure you come to The Vintage Twin‘s Open Bar & Pop-Up Shop NEXT WEEK! Ten percent of the proceeds from the three-day pop-up shop will go to the Crohn’s and Colitis Foundation of America! And since it’s President’s Day and many people are off, what can be better than a Monday Funday?
Sarah Choueiry Talks About Her Journey With Crohn’s
For those active in the Crohn’s blogging world, you’ve come across Sarah Choueiry at one point. Sarah is the amazing person behind the My Journey with Crohn’s blog, which recently became a non-profit!
Below, Sarah talks about her Crohn’s journey and how she came up with the idea for her foundation, as well as its goals.
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.
Caring for Crohn's & UC 