Posts filed under ‘General Disease’

CCFA Releases Research Progress & Goals

Today, the Crohn’s & Colitis Foundation of America released its “Challenges in IBD Research” report outlining what’s been accomplished in the field of research over the past five years and what they hope to accomplish in the future. The last report was released in 2008 and since then, lots has been accomplished in the field of research.

The previous report detailed findings from 2004-2008, including the identification of genes for IBD; a better understanding of the relationship between the immune system and gut bacteria; the discovery of cells that drive and regulate immune responses; and a better understanding of how the immune system keeps stability in the lining of the gut. All of the below information has been pulled from the study’s Lay Summary.

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April 18, 2013 at 8:48 pm Leave a comment

Guest Post: The Silent Battle Before an Ostomy

Today’s post comes from Brian Greenberg, the man behind the Intense Intestine’s Foundation. Brian has battled Crohn’s disease for years and, two-and-a-half years ago, became an ostomate. Despite having an ileostomy, Brian refuses to let his disease get in the way of his love for the outdoors and life. Below he talks about the internal struggle many patients go through prior to getting an ostomy.

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April 17, 2013 at 10:50 am 1 comment

Health Activist Writer’s Month Challenge Day 4

Create a “care page” – a list of your best resources that someone who is newly diagnosed could go to when starting to advocate for themselves or a loved one. Remember to include sites that lead to successful self-advocacy!

This is definitely an interesting post for me to write. When Dan was first diagnosed six years ago, I didn’t look for resources- I was just his girlfriend and the bulk of his care wasn’t going to be my responsibility. I lackadaisically went about caring for him and just assumed that how he was feeling was normal for the diseases. Of course I was wrong and, in retrospect, I probably should have taken the initiative to look at resources and different things I could do to help him cope with the disease.

That being said, here is a list of the best resources that have helped me in the three and a half years that we’ve been married:

Crohn’s and Colitis Foundation of America

Mayo Clinic

Advocacy for Patients with Chronic Illness

Crohn’s & Me

Crohnology

Crohn’s & Colitis Diet Guide

Family Medical Leave Act

Social Security Disability

April 4, 2013 at 6:59 pm Leave a comment

Health Activist Writer’s Month Challenge Day 3

Post a picture that symbolizes your condition and your experiences.

Here is what I thought was a good one for symbolizing Crohn’s disease and my experiences with it:

I know I’m not supposed to use words but I want to elaborate a tiny bit as to why I picked this image.

Living with Crohn’s is a constant battle of ups and downs. I can attest to that. Dan has gone through good periods and bad ones and there is no rhyme or reason as to when they occur. It can feel like we are on a roller coaster ride- going up a hill to get to remission, plateauing when he feels well, and then plummeting when his Crohn’s acts up.

This picture also represents how there are highs and lows emotionally with Crohn’s disease- happy when you are feeling well, scared when something is wrong, and sad when the disease interrupts your life.

April 3, 2013 at 2:41 pm Leave a comment

Health Activist Writer’s Month Challenge- Days 1 & 2

I’m a little late to the game (by one day) but I am going to try to participate in WEGO Health‘s challenge this month. April is Health Activist Writer’s Month and brings the official Health Activist Writer’s Month Challenge. Every day, health bloggers and other online writers will get a prompt and I will explore the different topics on here as often as I can. That being said, here are my posts for Day 1 and 2!

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April 2, 2013 at 7:58 pm Leave a comment

Attention Tri-State IBD-ers: Great Education Program in CT This Weekend!

CT Patient Education Symposium - to post online

This is going to be a fantastic education event! Speakers include Dr. Jack Chuong (Digestive Disease Associates), Dr. Dinesh Pashankar (Yale Medical Group), Dr. Francisco Sylvester (CT Children’s Medical Center), Dr. Sandra Escalera, Dr. Joel Garsten (Digestive Disease Center of CT), Dr. Harry Schwartz, Dr. Phil Ginsburg (Gastroenterology Center of CT), Dr. Yanni Oikonomou (Yale Medical Group) and Dr. Michelle Smedley (Connecticut GI).

Topics to be covered include IBD in children, nutrition, medical & surgical care for adults, novel therapies, and support groups.

And the best part of it all- it’s free!

Make sure to RSVP and check it out if you are around this weekend in CT.

April 1, 2013 at 3:49 pm Leave a comment

IBD & Migraines: Increased Risk?

Did you know that people with inflammatory bowel disease may be at a higher risk for migraines than those without the diseases?

That’s what a new study from researchers at Columbia University are reporting.

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March 2, 2013 at 7:46 pm 2 comments

Come Friday, Patients Will Begin To Feel Impact of Sequestration

Sequestration is the buzz word lately.

With the $85 billion in spending cuts set to hit the government, and subsequently all Americans, March 1, it’s time to learn how this will really impact health care.

The unfortunate thing is that there are very few real details out there about the sequester, and as we all know, the devil is in the details. All that is available is estimates as to how it will impact federal agencies and the states as a whole. But there’s no doubt that health care in the country will suffer if our leaders don’t figure things out by Friday.

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February 26, 2013 at 9:40 pm Leave a comment

REMINDER: Next Week, NYC Open Bar/Pop-Up Shop to Benefit the Crohn’s & Colitis Foundation of America

Do you like alcohol and vintage clothes? Live in the NYC area?

If so, make sure you come to The Vintage Twin‘s Open Bar & Pop-Up Shop NEXT WEEK! Ten percent of the proceeds from the three-day pop-up shop will go to the Crohn’s and Colitis Foundation of America! And since it’s President’s Day and many people are off, what can be better than a Monday Funday?

 

February 15, 2013 at 2:05 pm Leave a comment

IBD Medical Terms in Plain Language

I was going through my Twitter feed the other day and came across something from Care Novate Magazine, an online resource that provides information on caregiving, social media and medical literacy. It’s a really cool idea and I spent awhile going through the site, which is how I came up with this post.

The most difficult part of living with a chronic illness like IBD is understanding what your doctors tell you. No matter how hard they try, medical jargon is still used in explanations, and a lot of the time, patients and their loved ones don’t fully understand what’s going on.

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February 11, 2013 at 7:33 pm 1 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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