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
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.
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!
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!
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.
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.
Happy Crohn’s and Colitis Awareness Week everyone!
Today marks the beginning of Crohn’s and Colitis Awareness Week 2013 and more than ever, I can’t stress the importance of this week for raising awareness and educating others about inflammatory bowel diseases.
Before Dan was diagnosed, I didn’t know much about IBD. In fact I was one of those people who thought IBD and IBS were one in the same (I now know that they are most definitely not).
In the almost seven years since Dan was first diagnosed with Crohn’s disease, I have learned more about these debilitating diseases than I ever imagined I would. I have witnessed the good and the bad- colonoscopies, hospitalizations, surgeries, medications, tens of thousands of dollars in medical bills- you name it, Dan and I have been through it.
I have also been able to raise awareness and educate others who knew nothing about the disease learn about why Crohn’s disease and ulcerative colitis are not just pooping diseases. Through Team Challenge and Take Steps, over the past three years Dan and I raised over $21,000 for research and education of Crohn’s disease and ulcerative colitis.
But I’ve also had the pleasure of meeting incredible people who are battling these diseases and have become my second inspiration for raising awareness.
Today’s post is going to be pretty heavy- I am exploring some of the hard stuff (no not alcohol) that we IBD patients and advocates don’t like to talk about.
Most days, I don’t think about how serious Crohn’s disease and ulcerative colitis can be. I see my husband who, after a few rough years, is living a relatively normal life with little pain. Yes, he still frequents the bathroom and yes he still has cramping but compared to previously, his life has changed for the better.
That’s not the case for many people. This past year has been a rough one for several of my IBD friends. In July, one had her temporary ileostomy made permanent after spending a month in the hospital with uncontrollable inflammation and being under the impression that it was going to be reversed. Another had the last several inches of her colon removed two days after doing a half-marathon and has been struggling with issues at her surgery site. A third has been in and out of the hospital over the past few months with partial blockages.
If you live with a mild to moderate form of IBD, you often aren’t faced with the severity of the disease – in some cases, it can be fatal. This morning, I woke up to find out that a member of one of the IBD Facebook groups I belong to passed away due to complications of her disease. I don’t know the full details of her death but I was told that she had a stricture and trouble breathing, called 9-1-1, and by the time the ambulance arrived, she had passed away. She leaves behind two small children and her husband.
Prior to her death, the only one I had heard of was Jennifer Jaff, who passed away in 2012 from Crohn’s disease complications.
More often than not, IBD patients experience complications from their disease. If not detected and treated early, some of these complications can be extremely harmful and in rare instances, cause death.