Posts tagged ‘Crohn’s and Colitis Foundation of America’

Big Caring for Crohn’s Announcement

Dear Readers,

I am writing with some exciting and bittersweet news for you.

I recently accepted a position with the Crohn’s & Colitis Foundation of America to work on its social media and public relations efforts. I have been heavily involved with CCFA for many years, first through its Take Steps community walks and then through its Team Challenge endurance training program. I greatly enjoyed my experiences with these programs and am incredibly excited about this new opportunity to work with the national organization that is working tirelessly to find a cure for Crohn’s disease and ulcerative colitis and improve the lives of the 1.6 million Americans living with these debilitating diseases.

While this new move is extremely exciting for me both personally and professionally, it is also bittersweet. I will be taking a hiatus from Caring for Crohn’s and turning the reigns over to Rosanne in the interim. I will miss engaging with all of you on here but I am confident that I am leaving you in the best of hands.

Once I am more settled in this position, I will update you on the future of Caring for Crohn’s.

With love,
Rebecca

July 7, 2015 at 7:18 pm Leave a comment

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.

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May 19, 2015 at 2:35 pm 3 comments

#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!

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December 7, 2014 at 9:45 am Leave a comment

#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.

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December 6, 2014 at 2:18 pm Leave a comment

#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.

December 5, 2014 at 9:45 am Leave a comment

#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

I was first diagnosed with Crohn’s disease via a colonoscopy in November of 2006 at the age of 22. Just three months after starting my first teaching job. I first started to have symptoms of lower, left side abdominal pain in April of 2006 during my student teaching.  Since my first colonoscopy I have had two more, along with a CAT scan to diagnose a partial blockage of where my small and large intestines meet, back in April of 2012.
This past summer, after a few months of pain and failed steroid treatments. I I had another colonoscopy and a barium x-ray with a small bowel follow through.   At the same time I was following a strict low residue diet and decided to try Lialda again.  To my surprise, my colonoscopy was normal and my x-ray was “surprisingly normal”.   This was great news, as the pain had also subsided.   I will be most likely be on Lialda for life, but that is something I can live with.  I also take Turmeric and Peppermint leave capsules daily to combat spams and bloating.
I refuse to let Crohn’s disease run my life, I will run it!  Granted I can no longer eat pineapple or popcorn, along with many other high fiber fruits, but if that is what it takes to stay healthy, then that is what I am going to do.   I rather run, play soccer and rock climb.

December 4, 2014 at 10:15 am Leave a comment

#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.

December 3, 2014 at 12:51 pm Leave a comment

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