Posts filed under ‘Advocates’

#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

#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.

10807_10101299192115462_2027024958629790806_nFirst up, my friend Andrea from The Great Bowel Movement.

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December 2, 2014 at 10:15 am Leave a comment

#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.

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December 1, 2014 at 4:03 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

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

Cure vs. Remission: Thoughts from a Crohn’s Caregiver

Recently, I was engaged in a Facebook argument (mature I know) with someone about whether or not Crohn’s disease could be cured. She (who doesn’t have the disease) was claiming that it could be cured by eliminating trigger foods from the patient’s died. I was trying to explain to her, with little success, that yes, if you eliminate trigger foods, some patients will experience a decrease in symptoms and subsequently may enter into a period of remission; however, that does not mean they are cured.

This argument really made me angry and I started to do a little digging online and was astounded to see how much misinformation there is out there. That is why I wrote this piece for the Huffington Post:

Crohn’s disease and ulcerative colitis are the two main diseases that make up the broad inflammatory bowel disease diagnosis. In patients with these diseases, the body’s immune system attacks parts of the digestive tract and causes inflammation, cramping, diarrhea, bleeding and all sorts of other issues.

According to the Crohn’s and Colitis Foundation of America, “To date, there is no known cause of or cure for IBD, but fortunately there are many effective treatments to help control these diseases.”

Medications, surgery, and diet modifications can help patients with inflammatory bowel diseases live regular lives. In patients with Crohn’s disease, neither of these treatments induces a cure; the best they do is bring a patient into a symptom-free state (remission, see below). Patients with ulcerative colitis can be treated with the surgical removal of the colon; however, surgery will not cure the underlying inflammatory disorder that the patients have, leaving them susceptible to pouchitis, arthritis, skin ulcers and other autoimmune diseases. The bottom line: When you have an inflammatory bowel disease, you have it for life.

Please take a look at the full piece here!

January 31, 2014 at 1:13 pm 5 comments

Shop Vintage & Raise Money for CCFA!

It’s that time of the year again.

Dan and I are back at it, raising money for the Crohn’s and Colitis Foundation of American through its Team Challenge program. We will be training to run/walk in the Jamestown Half Marathon this July and we couldn’t be more excited!

Last year we raised $7,500 for CCFA and this year we are upping our goal and hoping to raise $10,000 in the name of research and education about these debilitating diseases.

Shop vintage, benefit CCFA!

From now until February 10, The Vintage Twin, an AWESOME vintage goods company specializing in one-of-a-kind vintage finds, is donating 10% of its online sales to our fundraising efforts for CCFA. Check out their awesome clothing, accessories and other goods and shop early & often!

ccfaFACEBOOK

January 30, 2014 at 9:39 pm Leave a comment

2013: Year in Review

Happy New Year’s Eve everyone!

This past year has been an exciting one for Dan and I, both online and offline. In the past year, Caring for Crohn’s & UC expanded incredibly- while I wrote far fewer posts than last year, the blog received over 19,000 views and gained This year, Caring for Crohn’s & UC exploded beyond my wildest dreams, having over 19,000 views by over 10,000 visitors, and gained 45 WordPress followers, 9 Tumblr followers, 131 Facebook fans and 213 Twitter followers. (Disclaimer: I am a huge analytics nerd, so please forgive me for being so excited over these numbers :-)) Thank you all SO much for your continued readership and support- while I haven’t kept up with posting as frequently as I want to, I am so happy that the content I wrote over the past two years has reached so many of you. It’s all in the name of raising awareness and educating others about inflammatory bowel diseases.

Enough about the numbers- here are some of my 2013 highlights.

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December 31, 2013 at 11:24 am Leave a comment

Not Just a Pooping Disease: 10 Things You Didn’t Know About Inflammatory Bowel Disease

I recently had the privilege of working on a piece for the Huffington Post with Stephanie from The Stolen Colon for Crohn’s Disease and Ulcerative Colitis Awareness Week. The piece posted today and I wanted to share a snippet from it with you:

These diseases have been known primarily as “pooping diseases” because many patients frequent the bathroom as a result of the cramping and abdominal pain caused by IBD. However, there are many aspects of the disease that are far worse than spending time in the bathroom.

Here are 10 things you didn’t know about IBD:

IBD patients often take many medications with powerful side effects.
Patients with IBD often depend on medication to control the inflammation and pain caused by their disease. Medications commonly used include antibiotics, anti-inflammatories, steroids and immunosuppressants.

While beneficial, these medications can cause side effects including nausea, vomiting, heartburn, night sweats, insomnia, hyperactivity, high blood pressure and stunted growth in children. Patients on immunosuppressants are at risk of developing lymphoma, tuberculosis, kidney and liver damage, anaphylaxis, seizures, and serious or fatal infections.

IBD causes extraintestinal issues.
Crohn’s disease and ulcerative colitis can cause issues in other parts of the body, including inflammation of the inner part of the eye, mouth sores, arthritis, osteoporosis, gallstones, kidney stones, skin rashes and ulcerations, blood clots, anemia and several neurological conditions, including seizures, stroke, myopathy, headaches and depression.

IBD can have significant impact on the mental health of patients.
According to Oak Park Behavioral Medicine, about 25 percent of people with IBD will experience depression even when in remission, and that number rises to 60 percent during a flare. Outside of depression, the Crohn’s and Colitis Foundation of America reports that patients with IBD often experience anxiety, denial, dependence, stress and poor self-image.

Having IBD is exorbitantly expensive.
The annual direct cost of Crohn’s disease and ulcerative colitis in the United States is estimated to be $6.1 billion. A recent study showed that the mean annual cost for a patient with Crohn’s was $8,265 and for ulcerative colitis was $5,066. Each patient’s situation differs, but the most common costs of IBD include diagnostic tests, hospitalizations, surgery and medications, some of which can cost as much as $10,000 per dose.

You can view the full piece here.

December 6, 2013 at 4:51 pm 3 comments

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