Introducing New Caring for Crohn’s & UC Contributor!
Keeping a blog current takes a lot of work and content. As many of you know, I’ve had a lot of trouble writing as often as I should in order to keep the blog up to date. After a lot of thought, I decided that I could use help writing on the blog and interacting with Caring for Crohn’s readers.
So I am incredibly excited to announce that my friend Rosanne will be joining Caring for Crohn’s as a new contributor!
I first met Rosanne in 2013 through the Crohn’s & Colitis Foundation of America’s Greater New York City Chapter’s Communication’s Committee (man that’s a mouthful). Rosanne was diagnosed with ulcerative colitis in 2006. She is very active in the IBD community, not only on the communications committee with me but also as a volunteer with Staten Island support groups and a Take Steps participant. She is a public relations professional, a Disney enthusiast, and a new mom to an adorable five month old baby boy.
Rosanne will be blogging here about her experience with ulcerative colitis and as a new mom with an inflammatory bowel disease as well as general information about IBD. You can follow her on Twitter at @RoeMoPR.
Please join me in welcoming Rosanne to the Caring for Crohn’s family!
World IBD Day 2015- A Day of Thanks
Today, May 19, marks the observance of World IBD Day, a day led by patient organizations across four continents to raise awareness and educate the public about inflammatory bowel diseases. Around the world, more than 5 million people live with Crohn’s disease and ulcerative colitis, two debilitating digestive diseases that have detrimental effects on patients physically, emotionally, financially, and more. I know that my blog has been stagnant for months, but I figured today was a great day to return to it.
On World IBD Day last year, I talked about feeling defeated by the lack of progress being made for IBD patients. I was feeling pessimistic after the passing of a young IBD patient and a segment on a major news station that confused IBD with IBS. After a lot of thinking, I decided this year I wanted to be more optimistic.
I just returned from spending four days in Washington, D.C. as part of the IBD Social Circle, the online movement dedicated to bridging communications gaps and inspiring and educating the IBD community. While there, I got to spend time with some incredible IBD activists, like Ally Bain (the girl behind Ally’s Law/Restroom Access Act), Laura of Mangia Paleo, Brian of the Intense Intestines Foundation, Stephanie of The Stolen Colon, and so many more. I also was provided the opportunity to attend Digestive Disease Week, the world’s largest gathering of physicians and researchers in gastroenterology, hepatology, endoscopy, and gastrointestinal surgery. After spending a weekend surrounded by strong, passionate advocates and bloggers talking about Crohn’s disease and ulcerative colitis, I decided that this year’s post would be dedicated to thanks.
#ThisIsIBD: Craig
Today is the last day of Crohn’s and Colitis Awareness Week and, as I look back over all the stories that have been shared over the past seven days, I am in awe of how strong the Crohn’s and ulcerative colitis patients in my life are. Each story is unique but what they all have in common is that they refuse to let their disease run their life, no matter how difficult living with the diseases can be.
On the last day of this important awareness week, #ThisIsIBD story comes from Craig. Craig’s story is pretty incredible- diagnosed with both Crohn’s disease and Celiac Disease and overcame odds to become a professional arena football kicker and a two-time Guinness World Record holder.
Make sure to check out his full story after the jump!
#ThisIsIBD: Rosanne & Sean
Today’s #ThisIsIBD stories come from two incredible people- Rosanne and Sean. Rosanne and I met through our volunteer work with the Greater NYC Chapter of the Crohn’s & Colitis Foundation of America. She’s a great advocate and a Disney blogger in her spare time.
Sean is the founder of Crohnology, a social network for patients with Crohn’s disease and ulcerative colitis. Through Crohnology, a newly diagnosed patient can find others with the same condition in his/her city, learn about the treatments are working for patients, and record his/her progress as he/she tries new treatments, ultimately to get better and help others.
#ThisIsIBD: Ben
Today, my friend Ben shares his #ThisIsIBD story. Ben married my good college friend several years ago and this past summer, ran the Jamestown Half Marathon with us, his first race ever. Way to go!
Ben, 29, Crohn’s disease
During the fall semester of my senior year of college, I was studying abroad in South America. After about a month, I started having severe stomach pain and diarrhea. I thought that my body was just getting used to the Chilean food and water. In addition, one of my brothers had been in a severe car accident that caused me to fly home to Maryland for a week, so I thought that stress was a factor as well. However, the symptoms did not abate, and I lost close to 50 pounds. Stubbornly, I did not see a doctor until I returned home for good in the winter, and when I did I was diagnosed with Crohn’s disease.
At first my symptoms were debilitating and I felt very unlike my usual self. However, after several months, I was able to get back to a normal weight and get my symptoms under control. Nevertheless, several of my other friends have not been so lucky. Having friends who have gone through surgery and have to endure monthly infusions of medication shows me how lucky I am compared to others.
For me, my Crohn’s disease has been a great motivator. I take several pills each day to keep my symptoms in check and get a bi-monthly blood test, but as long as I eat healthy foods and exercise regularly, Crohn’s remains a small part of my life. This past summer, I trained for and completed the Jamestown Half Marathon in Rhode Island as part of Team Challenge New England, and raised several thousand dollars for IBD research. This was the culmination of months of training and accomplishing something that I never thought I’d be able to do.
I still have bad days symptom-wise occasionally, but my Crohn’s disease does not define who I am. Crohn’s/IBD means a commitment to staying healthy and showing that life’s challenges can be overcome.
#ThisIsIBD: Laura
Today’s #ThisIsIBD story is from Laura. Laura is one of my good friends from Team Challenge who, despite having Crohn’s disease, is a speed demon half-marathoner many times over (she ran the Jamestown Half Marathon last year in 1:41).
Laura, 30, Crohn’s disease
#ThisIsIBD: Jeffrey
Today’s #ThisIsIBD story comes from Jeffrey . Jeffrey is another IBD blogger and sits on the board of the Intense Intestines Foundation.
Jeffrey, 41, Crohn’s disease
I was diagnosed with Crohn’s disease in the 1980’s and went through years of being sick but just wanting to feel better and live my life. I didn’t know much about the disease, and, due to a lack of resources and motivation, I didn’t see any point in learning more about my disease. I spent years ignorant of what I had.
In 2011, my life with Crohn’s disease changed, and so did my goals. My father-in-law, who lived with ulcerative colitis and had an ostomy, passed away due to complications from his disease. I looked up to him in my battle with IBD and he was an inspiration in how he lived his life. I also went into my worst Crohn’s disease flare that same year. I started going through depression and felt like my life was going downhill real fast.
Three years later, my life has completely changed. Having IBD has built up my character and confidence. Thirty years ago, I didn’t fully understand Crohn’s disease and wouldn’t talk to anyone about it. Now I am well educated about my disease, research and the new treatments that are being developed. I run a support group that helps other find their voice to speak up. I feel like I have been quiet with my disease for way to long and now that it has helped define who I am, I will never keep quiet about it again.
#ThisIsIBD: Andrea
When I sought out stories for my recent Huffington Post piece to illustrate life with IBD, I received an incredible amount of personal stories from people living with Crohn’s disease and ulcerative colitis, too many to fit into the 1,000 word limit I had for my piece. In observance of Crohn’s and Colitis Awareness Week, I am going to share the additional stories on my blog throughout the week.
First up, my friend Andrea from The Great Bowel Movement.
#ThisIsIBD
This post originally appeared on the Huffington Post; however the stories included below are the full versions and not the ones that appear externally.
December 1 marks the start of Crohn’s and Colitis Awareness Week, an important week within the inflammatory bowel disease (IBD) community to bring attention to Crohn’s disease and ulcerative colitis (UC), two debilitating digestive diseases that cause crippling abdominal pain, persistent diarrhea, rectal bleeding, and weight loss.
More than 1.4 million Americans live with these diseases, yet most people are unfamiliar with them, thinking that IBD and irritable bowel syndrome are synonymous, or downplaying the symptoms.
“One of the most challenging things is that every patient’s disease is different,” says Rick Geswell, president and CEO of the Crohn’s & Colitis Foundation of America. “We know that what works for one patient, may not work for another. And it’s so unpredictable. Some patients are so sick that they can’t even leave their homes. Others may have mild disease for most of their life and then all of sudden they flare and land in the hospital. That’s why it’s so important for all patients to rally together — especially during awareness week.”
As Geswell says, it’s hard to grasp the reality of living with these diseases. So in order to explain what it’s like have an inflammatory bowel disease, I asked several patients to share their experiences.
CCFA CEO Addresses Hot Button IBD Issues
There are many hot button issues related to inflammatory bowel disease and when I met with Rick Geswell, president and CEO of the Crohn’s and Colitis Foundation of America, I took the opportunity to address two of them- the use of the word “cure” related to ulcerative colitis patients, and mortality associated with these diseases.
Caring for Crohn's & UC 