Posts filed under ‘General 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.
Reblog: Ileostomy, colostomy, urostomy: What’s the difference?
My fabulous friend Stephanie at the Stolen Colon is one smart cookie. Her most recent post about the different types of ostomies is so informative that I needed to share it with you all. You can view the original post here or by reading below.
A conversation about pooping
I know that I have been radio silent on the blog for several months now, and I am sorry for that. Life has gotten very busy and the blog has taken a backseat to everything else. But I am still looking at the comments and am involved with the online IBD community- just to a lesser extent.
Two quick things before I get into this post-
- New Huffington Post piece is up- World IBD Day: It’s Not All Sunshine and Flowers
- My letter to the editor appeared in the NY Times this week in response to a recent column about IBD
Now onto tonight’s post.
I have an incredible group of friends who all have IBD that I met through Team Challenge last year- Kelly (Crohn’s disease), Laura (Crohn’s disease), and Katie (ulcerative colitis). They all live in Connecticut and I was so sad to leave them last year when Dan and I moved for my job. It’s nights like tonight when I am reminded how much I truly love having them in my life.
Tonight I have been part of a group text message about things that these ladies have done while pooping (at one point, I had 43 unread messages). Summarizing it won’t do it justice, so I am just going to write it out verbatim for your enjoyment.
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!
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!
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.
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.
Caring for Crohn's & UC 