Posts tagged ‘Crohn’s Sucks’
Caring for Crohn’s & UC: Year in Review
This has been a great year for Caring for Crohn’s, both on the blog and personally.
After toying with the idea for several months, I finally launched the blog in June. After a few months on Tumblr, the blog was merged onto WordPress and now here we are!
In just six months, I wrote 73 posts and the blog received over 3,600 views, and gained 19 WordPress followers, 50 Tumblr followers, 124 Facebook fans, and 175 Twitter followers. Thank you all SO much for your readership and support– this blog branched out beyond my wildest dreams and I am so appreciative of all of you who made that happen.
Without further ado, here are some of the 2012 highlights for Caring for Crohn’s!
WordPress’ 2012 in review for Caring for Crohn’s
The WordPress.com stats helper monkeys prepared a 2012 annual report for this blog.
Here’s an excerpt:
The new Boeing 787 Dreamliner can carry about 250 passengers. This blog was viewed about 1,800 times in 2012. If it were a Dreamliner, it would take about 7 trips to carry that many people.
IBD & Depression
If you have IBD, you know how taxing it can be, not only physically but also emotionally. It’s no surprise given the symptoms IBDers live with on a daily basis- painful cramps, diarrhea, weight loss, loss of appetite, and nausea. Living with these can wear you down and eventually, you might find that you have fallen into a bout of depression.
According to the World Federation for Mental Health,
“Quite often, physical and mental health disorders go hand in hand. Research shows that persons with severe or chronic physical illnesses often have a co-existing mental health problem.”
A Holiday Wishlist for Crohn’s & Colitis
Living with IBD, whether you are the patient or the caregiver, is taxing on everyone. I’m sure you have wished for something to help with the burden- from financial assistance to new medication and everything in between.
Every year, children (and some adults too) around the world write up their wishlist for presents for the holiday season. In that vein, here is a holiday wishlist for Crohn’s Disease and Ulcerative Colitis.
The ABC’s of Crohn’s & UC: “M” & “N”
I may be posting intermittently from now until the end of the year with the influx of relatives that will be visiting and staying with us. However, I wanted to get one more ABC post in while I still had the time. So without further ado, next up in the ABC’s of Crohn’s and UC- “M” and “N.”
Transplant for patients with severe Crohn’s?
Over the past few months, I’ve written posts about all sorts of new treatments being studied for IBD- bone marrow transplants and whipworms to name a few. Those sounded a little crazy to me but definitely intriguing. However, a new study published by the University of Pittsburgh Medical Center suggests that intestinal or multivisceral (three or more abdominal organs) transplants are effective treatments for patients with Crohn’s so severe that they no longer tolerate an IV nutrition.
As we all know, when Crohn’s is severe, its hard to absorb nutrients or even eat. For those who have irreversible intestinal failure, they may need to receive nutrition through a tube intravenously, known as total perenteral nutrition. According to the study, those who do not tolerate the IV nutrition are often referred for an intestinal transplant.
New Site Feature!
Today, I launched a new feature to Caring for Crohn’s- a listing of IBD specialists across the country. There is now a tab on the menu on the top of the page that reads “IBD Doctors“. If you click on that, you can view doctor listings by each state.
Some states do not have doctors listed- that is because I used U.S. News & World Reports rankings of Top Doctors and there weren’t any listed for that state. However, that doesn’t mean there aren’t any great IBD doctors in that state!
If you know of any that aren’t listed, please email me at caringforcrohns@gmail.com.
There is nothing more important that having a doctor who is extremely knowledgeable in IBD and is helpful and listens to your concerns. I hope you find this new page helpful!
The ABC’s of Crohn’s & UC: “L”
My heart is still heavy from the Newtown shooting in my home state but I wanted to go back to the real reason why I blog: to educate people and raise awareness about Crohn’s and Ulcerative Colitis.
Tonight’s post is the next installment in the ABC’s of Crohn’s and UC series- the letter L.
More genes identified for Crohn’s Disease
Last week, I wrote about Crohn’s Disease and genetics. Now, a week later, a new study identified even more genes that could be linked to Crohn’s Disease, bringing the total number of genes associated with the disease from 163 to more than 200!
Scientists at University College London recently came up with a new method for identifying genes for complex diseases, like Crohn’s. In doing so, they were able to identify more than 200 genes associated with Crohn’s- more than have been found for any other known disease.
Here’s an interesting quote about the study from an article from Science Daily.
Dr Nikolas Maniatis, senior author from the UCL Research Department of Genetics, Evolution and Environment, said: “The discovery of so many gene locations for Crohn’s Disease is an important step forward in understanding the disease, which has a very complicated genetic basis. We hope that the method we have used here can be used to identify the genes involved in other diseases which are similarly complex, for example different cancers and diabetes.”
Doctors typically don’t do genetic testing for Crohn’s or UC, unless its for research purposes, since the link is still so widely debated. However, with more and more genes being discovered, I wonder if more patients will be genetically tested for the diseases.
Right now, Prometheus, a diagnostic testing company, has a NOD2/CARD15 that is used to identify genes in Crohn’s patients. According to the company’s website,
“…is a test to evaluate certain genetic variants for patients diagnosed with Crohn’s disease. Detection of one or more NOD2/CARD15 genetic mutations suggests a risk of having more severe symptoms and complications of the disease. This testis used to help establish a prognosis that may help guide treatment decisions by you and your doctor.”
The same company also has an IBD diagnostic test that uses serologic, genetic, and inflammation markers for diagnostic clarity. This test, IBD sgi Diagnostic, is supposed to help doctors differentiate between IBD and non-IBD and Crohn’s Disease and UC in one blood test.
The idea of genetic testing for Crohn’s and UC is extremely interesting. I look forward to the day when a test is developed that shows the likelihood of passing IBD along from parent to child.
Huffington Post: Why I Celebrated Crohn’s & Colitis Awareness Week
In the excitement of Crohn’s & Colitis Awareness Week and the #PurpleChallenge, I completely forgot to share with you my exciting news- I wrote another piece on Crohn’s for HuffingtonPost.com!
In case you missed it, in August, I wrote a piece for the Huffington Post on what it’s like to be a caretaker for someone with Crohn’s Disease. After writing that and the great feedback I got from those who read it, I knew I wanted to write another piece sometime soon. After racking my brain I realized my next topic was right in front of me- why I celebrate Crohn’s & Colitis Awareness Week.
Here’s an excerpt of my post:
Six years ago, I had not heard of Crohn’s disease or ulcerative colitis. I lived in a world where I was blissfully unaware of inflammatory bowel diseases, where the debilitating symptoms didn’t impact my life. Then I met my now-husband Dan, and everything changed.
Dan was diagnosed with Crohn’s disease just two weeks after we started dating in 2007. Now, six years later, we have been through the gamut with the disease. He’s been on three different medications, with one of them making it nearly impossible for him to function because of severe fatigue. Now, instead of taking oral medication, Dan receives an IV infusion every six weeks at the doctor’s office. He’s had three different gastroenterologists. He’s been hospitalized for a post-colonoscopy infection and an intestinal blockage. Most recently, he had part of his small intestines removed in order to treat the disease.
Check out the full post here.
Caring for Crohn's & UC 