Posts tagged ‘ulcerative colitis’

A Baffling Side Effect

We are confused.

In the six and a half years that Dan has been treated for Crohn’s disease, he has lucked out in that, for the most part, he has not experienced any serious side effects from medication. Asacol did nothing to him (in fact, it didn’t even help him). The only other medication he’s been on is 6-MP and that gave him terrible fatigue so severe that he could barely function.

Remicade

For the past 3 years, Dan has getting Remicade infusions every six weeks. He suffers very little side effects from it- in fact, the only thing he feels from it is sleepiness after the infusion caused by Benadryl and a slight headache. These all pass within a few hours to a day of the infusion.

As you know, Remicade can cause a variety of side effects ranging from mild ones like headaches, stomach pain or nausea to serious ones like joint/muscle pain, vision changes and anaphylaxis. Dan’s reaction to the medication, so far, has been on the mild side (knock on wood).

However, for over a year now, we have been baffled by one side effect he’s been experiencing since being on the medication – extreme thirst. Dan is extremely, insatiably thirsty every day. He has some days where when he wakes up, the thirst/dehydration is so bad that he feels nauseous and ill. He drinks constantly throughout the day but nothing seems to help his thirst.

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July 23, 2013 at 11:39 am 3 comments

Guest Post: Living with an Ostomy

I am about a month in to my new job and sadly, life hasn’t settled down enough for me to get back into the blogging swing of things. Therefore I bring you another AWESOME guest post to bridge the gap while I am unable to post.

As I wrote earlier this month, I got to meet Stephanie Hughes at the Virginia Wine Country Half Marathon where we were both participating and fundraising for Team Challenge, CCFA’s endurance training program. I read Stephanie’s blog, The Stolen Colon, and loved how positive she was (she’s also pretty funny- check out her Ode to a Rectum). So I was extremely excited to meet her and get to know her (and find out how similar we are).

Stephanie and I before the half marathon

Some quick background on Stephanie: she was diagnosed with Crohn’s disease in 1999 when she was 13. After battling with the disease for over a decade, Stephanie had most of her colon removed on May 7, 2012 and was given a permanent ostomy. And just two days after our half marathon, on June 3, Stephanie had the rest of her colon removed.

Below Stephanie talks about living life everyday with an ostomy.

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June 25, 2013 at 8:02 pm 3 comments

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

Birthright Israel Trip for People with IBD!

Are you Jewish? Have you ever been to Israel on an organized trip?

Well I’ve got some awesome news for you!

Amazing Israel, a division of Jerusalem-based Routes Travel, is organizing a FREE Birthright Israel trip for people ages 18-26 who have inflammatory bowel disease.

If you have IBD, you know how stressful traveling can be. This trip is made to accommodate the needs of those with IBD while not missing out on any of the sights- the Old City and Western Wall in Jerusalem, Independence Hall in Tel Aviv, the Sea of Galilee and Golan Heights, Masada, the Dead Sea, the Negev Desert, and Mediterranean beaches.

To qualify for the trip you need to be Jewish, going to Israel on an organized trip for the first time, between 18 and 26 and have a doctor’s note or other medical proof of your IBD.

For more information, visit Amazing Israel online or contact Rachel Nissim at rachel@routestravel.com.

April 4, 2013 at 8:51 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

It’s New York’s Turn to Pass the Restroom Access Act

Last year, Massachusetts became the 13th state to enact the Restroom Access Act, joining the ranks of Colorado, Connecticut, Illinois, Kentucky, Michigan, Minnesota, Ohio, Oregon, Tennessee, Texas, Wisconsin and Washington. As I wrote previously, the Restroom Access Act requires retail establishments to allow  people with certain medical conditions (including Crohn’s disease and ulcerative colitis) access to their employee only restrooms if a public one isn’t available.

Several other states are starting to look at enacting the Restroom Access Act, including New York. It’s about time!

The New York bill was introduced by Assemblywoman Amy Paulin and referred to the Assembly Health Committee. Unfortunately, it hasn’t made any movement in that committee since it was referred there in February.

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March 21, 2013 at 9:01 pm 3 comments

Running for a Cure

For the past several years, I’ve heard amazing stories about people participating in the Crohn’s and Colitis Foundation of America‘s Team Challenge half marathon program. For those who don’t know, Team Challenge is a half marathon training and fundraising program. Team Challenge participants “train with professional coaches and like-minded teammates for a rewarding and exciting 13.1 mile endurance event at one of our great destination races while raising vital funds for research into these diseases. Funds raised help make new treatments possible and fuel the search for cures.”

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February 20, 2013 at 1:07 pm 1 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

Sarah Choueiry Talks About Her Journey With Crohn’s

For those active in the Crohn’s blogging world, you’ve come across Sarah Choueiry at one point. Sarah is the amazing person behind the My Journey with Crohn’s blog, which recently became a non-profit!

Below, Sarah talks about her Crohn’s journey and how she came up with the idea for her foundation, as well as its goals.

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February 13, 2013 at 3:41 pm 1 comment

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The Caged Bird Still Sings

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