Posts filed under ‘Treatment’
Living in the in between
For me, the worst part of being the caregiver of someone with a chronic illness and also a patient myself is living in the “in between”- the grey area straddling the line of good and bad, healthy and sick. I am a bit of a control freak (I know, shocking) and get very agitated when I can’t anticipate what’s to come and can’t adequately plan for the future. Ask anyone who knows me- I am the captain of to do lists (and if they aren’t written neatly enough, I’ve been known to rewrite them) and timelines. Professionally, this makes me great at my job because I am always on top of my work and I can multitask incredibly well. But personally, it is a huge source of angst.
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: 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: 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.
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.
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!
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.
Caring for Crohn's & UC 