Archive for December, 2012

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.

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December 17, 2012 at 7:28 pm 1 comment

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!

December 17, 2012 at 2:01 pm Leave a comment

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.

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December 16, 2012 at 8:36 pm 1 comment

A state in mourning

Tonight’s post will be short and unrelated to IBD.

Today, a horrific thing happened in my home state of Connecticut. This morning, a disturbed young man opened fire in an elementary school, killing 20 children and six adults. We don’t know why it happened or what caused him to kill these young children.

There are no words to adequately express how I feel about today’s shooting aside from saying that I am saddened by the loss and maddened by what occurred. I am not a mother so I cannot relate to the feeling of having a child. However, I do know that there is no worse feeling than losing a loved one, especially to circumstances beyond your control. I can only imagine how much worse it must feel to loose a young child to the insane actions of a madman.

My heart goes out to the families of those who died in today’s Newtown shooting. It aches for the children who died and also for their classmates who, at such a young age, witnessed such a gruesome sight. And my heart aches for the principal who died trying to protect her students.

I ask you all tonight to pray for the families of those who died in the shooting. Pray for their comfort, assistance, and the ability to cope with such massive grief. I ask you to pray for all the residents of the town of Newtown who had their picturesque New England town turned into a nightmare. And I ask you to pray for all the residents in Connecticut who are so saddened and grief stricken by this awful act of violence.

Tonight I will leave you with a snippet of President Obama’s remarks on the shooting.

So our hearts are broken today — for the parents and grandparents, sisters and brothers of these little children, and for the families of the adults who were lost. Our hearts are broken for the parents of the survivors as well, for as blessed as they are to have their children home tonight, they know that their children’s innocence has been torn away from them too early, and there are no words that will ease their pain.

As a country, we have been through this too many times. Whether it’s an elementary school in Newtown, or a shopping mall in Oregon, or a temple in Wisconsin, or a movie theater in Aurora, or a street corner in Chicago — these neighborhoods are our neighborhoods, and these children are our children. And we’re going to have to come together and take meaningful action to prevent more tragedies like this, regardless of the politics.

You can read the full text of the President’s remarks here.

December 14, 2012 at 10:49 pm Leave a comment

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.

December 13, 2012 at 5:24 pm 2 comments

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.

December 12, 2012 at 10:27 am 3 comments

Medical Marijuana for Crohn’s & UC

I happen to live in a state that recently legalized medical marijuana, so this post has been on my mind for awhile. Medical marijuana is a controversial topic- some people are extremely in favor of the use of the drug to help treat nausea, vomiting, and pain. This post is neither to promote the use of medical marijuana nor prohibit it- its just one that looks into its efficacy as a possible treatment for IBD.

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December 11, 2012 at 8:01 pm Leave a comment

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The Caged Bird Still Sings

Striving to be content with the life I have been given, instead of the life I had imagined

Brian Greenberg

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