Posts tagged ‘ibs’
Raising Awareness One Day at a Time
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.
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.
My Best Friend, A New Crohnie, Tells Her Story on Caring for Crohn’s
A few months ago, my best friend Julia was diagnosed with Crohn’s disease. The diagnosis, like it is for so many people, has been difficult for her to wrap her mind around. I remember how hard it was for Dan when he was first diagnosed- understanding the disease, getting used to living with it, finding trigger foods, getting on the right medications, having tons of procedures, etc. But Julia has handled it with grace, no matter how down she feels.
Julia (on the right) and I in August 2012, two months before she was diagnosed
Julia spent some time last week writing down her thoughts about being diagnosed and what its been like for her. So today’s post is written by her, a new Crohnie, on learning to live with Crohn’s disease (note: Julia is a nurse so there will probably be a lot of medical terminology in this):
I feel like this all came out of nowhere.
Crohn’s disease?
I was half-awake, half-sedated, with the 100mcg of Fentanyl and 17mg of Versed I was given for my esophagogastroduodenoscopy and colonoscopy. My gastroenterologist, who I had met that day after seeing a GI Nurse Practitioner in the office a few months prior, stands over me as I come to. He told me, in medical terms (I’m an ICU nurse) that they found ulcerations and inflammation in my terminal ileum and that he highly suspects that I have Crohn’s disease. He told my friend who was picking me up (an ER nurse herself) that I would have to have a few scripts filled and that I should start taking these medication that day. I said, “Crohn’s disease?”
He said, “Crohn’s disease.”
Caring for Crohn’s Interviews Oak Park Behavioral Medicine
I recently had the opportunity to ask Dr. Tiffany Taft and Stephanie Horgan of Oak Park Behavioral Medicine some questions for Caring for Crohn’s and I am very excited to share the interview with everyone.
From L to R, Dr. Tiffany Taft & Stephanie Horgan
Oak Park Behavioral Medicine, located in Oak Park, Illinois, specializes in working with adults and children living with chronic medical illnesses. Dr. Taft and Stephanie are experts in the psychology of digestive illnesses, including IBS, Crohn’s Disease, Ulcerative Colitis, and Eosinophilic GI diseases, but also treat patients with other chronic illnesses.
What’s even more unique about this practice aside from the focus on treating patients with chronic illness is that both Dr. Taft and Stephanie are fellow Crohnies!
Read on to hear about their practice and how they help improve the psychological health of IBDers.
IBS v. IBD: the great intestinal debate
There is no worse feeling than someone telling you that they know what you are going through because they have IBS. Sadly, not many people realize that there is a significant difference between IBS and IBD. I know this firsthand because I have IBS while Dan has IBD. Below I explain the two illnesses and the differences between the two.
Debunking 10 IBD Myths
There are a lot of myths floating around about inflammatory bowel disease and I figured what better time than during Crohn’s & Colitis Awareness Week to clear some up!
Again, please note that I am not a doctor. All of the answers below are based on my knowledge of the disease and some external research. If any of this is incorrect, please let me know!
The ABC’s of Crohn’s & UC: “I”
Next up in the alphabet series is the letter I. I never thought I’d be saying that when 20 years ago I would run out of the room when the letter I came on during Sesame Street. But I digress.
There are a lot of really important I’s, so read up!
#13 for the Restroom Access Act!
Today, Massachusetts became the 13th state to sign the Restroom Access Act into law. Big victory for IBD-ers.
“This bill will provide peace of mind to people suffering from IBD, who will be able to shop without fear of a publicly embarrassing situation,” said Rep. Louis Kafka (D-Stoughton).Kafka sponsored the bill in the House and led an eight-year effort to get it enacted. He introduced the legislation at the request of a constituent, Canton attorney Jonathan Rutley, who drafted the measure for his 17-year-old daughter and ulcerative colitis patient, Catherine (Catie).
For those who are not familiar with it, the Restroom Access Act (also known as Ally’s Law) requires retail establishments that do not have a public restroom to allow people with IBD, IBS, other chronic conditions, and pregnant women access to employee restrooms. As you all know, this is very important for IBD-ers. The last thing you need is to be out somewhere that has no public restroom and be denied access and have an accident.
Caring for Crohn's & UC 