Posts tagged ‘Colitis’

#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

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.

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October 28, 2014 at 3:30 pm 1 comment

Microbiome & IBD: The future of treatment?

When I sat down with Rick Geswell, president & CEO of the Crohn’s & Colitis Foundation of America (CCFA) in September, I knew the conversation would focus primarily around CCFA’s Genetics and Microbiome Initiative. I had seen the video that CCFA put out but beyond that, knew very little about the two initiatives and definitely had no idea how microbiota are linked to Crohn’s disease and ulcerative colitis. But what I learned about it is fascinating.

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October 17, 2014 at 2:57 pm 1 comment

Meet Rick Geswell, CCFA President & CEO

As many of you know, I am a big supporter of the Crohn’s and Colitis Foundation of America (CCFA). I am an alumnus of its Take Steps and Team Challenge programs, sat on the board of its Connecticut Chapter, and I am currently helping its New York City and Fairfield/Westchester Chapters develop communications strategies. I believe that they are the organization that has the most amount of clout in the inflammatory bowel disease (IBD) field and has the ability to create the most change and bring us closer to finding a cure for Crohn’s disease and ulcerative colitis.

I recognize that there is some discontent in the IBD community over how CCFA engages with them. There have definitely been times when I have been unhappy with how they have responded to a certain article, their use of levity about a serious topic (clown shoes in the Escape the Stall campaign), and how slow they are, at times, to jump on the bandwagon with social media campaigns. That being said, with a $70 million budget, they remain the biggest player in the IBD world. Therefore, I believe that, regardless of your personal experiences with CCFA, it is an organization that we all should rely on for the well-being of those with Crohn’s disease and ulcerative colitis.

I was recently given the opportunity to sit down with Rick Geswell, president and chief executive officer of CCFA, to learn more about him, about CCFA and its initiatives, the future of the organization, and the future of IBD treatment. I will be relaying my interview with him over several blog posts in the near future and to start, here is the first in the series- Meet Rick Geswell.

Disclaimer: The details I am reporting below are directly from Rick Geswell of CCFA and do not represent my personal beliefs (although many are aligned). If you want to know if I agree with something, please feel free to ask me in the comments or email me at caringforcrohns@gmail.com.

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September 11, 2014 at 12:06 pm Leave a comment

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