Archive for January, 2013
IBD & the Paleo Diet
If you’re like me, cooking special foods to help your loved one with IBD feel good is like a second nature. IBD patients have different needs than those who can tolerate normal diets. There are a lot of different diets that IBD-ers try as a way to help reduce symptoms and enable them to live pain-free lives- SCD, low-fiber, low-residue, gluten-free, dairy-free, etc. Today, I will be focusing on one specific diet: the Paleo diet.
According to the Food Lover’s Kitchen, the Paleo, or “paleolithic,” diet
“…is based upon the idea of eating the foods our bodies were designed for through thousands of years of evolution. These foods were available to early people through hunting and gathering [meat and fish, nuts and seeds, fruits and vegetables].”
IBD & Social Security Disability
We all know IBD can be disabling- the chronic pain, fatigue, surgery and complications.
But did you know that IBD could qualify you for Social Security Disability benefits?
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.”
New Study Shows Depressive Symptoms Tied to Doubled Risk of Crohn’s in Women
A recent study published in the January issue of Clinical Gastroenterology and Hepatology shows a link between depressive symptoms and the incidence of Crohn’s disease and UC. The following information was taken from a write up on MedicalXPress.com:
Researchers from Massachusetts General Hospital and Harvard Medical School collected data from 152,461 women who participated in either the Nurses’ Health Study I or II. From the data collected, a total of 170 cases of Crohn’s and 203 cases of UC were reported from this population.
“We observed that depressive symptoms are associated with a two-fold increase in risk of CD but not UC. Although both recent (within four years) and remote (baseline) assessments of depression appear to influence disease risk, the association with recent depressive symptoms appeared more prominent,” the authors write. “Our findings support the potential importance of a biopsychosocial model in the pathogenesis of CD and suggest the need for further studies on the effect of depression and stress on immune function and regulation.”
The researchers found that women with depressive symptoms within the past four years, were more than two times more likely to be diagnosed with Crohn’s disease. However, no similar link between depressive symptoms and increased risk of UC was identified.
This is an extremely interesting development. As we all know, depression and IBD can go hand-in-hand due to the physical and mental toll the diseases take on your body. However, now there is scientific evidence that actually shows that psychological factors can contribute to developing Crohn’s disease.
You can read the full study here.
Final Installment of the ABC’s of Crohn’s & UC: “T,” “U,” “V,” “X,” & “Z”
It’s hard to believe that we’ve come to the end of the alphabet and thus the end of my ABC’s of Crohn’s & UC series. After this post, I will compiled all of the previous ones into a page on the blog so you can easily access this glossary I’ve compiled about IBD. Additionally, if I’ve missed anything important for any letter, please let me know!!! I would love to keep adding to this list and eventually turn it into something to help explain these diseases to those who are unfamiliar.
That being said, here is the final installment: T, U, V, X & Z.
CCFA Responds to IBD Community Criticism of New Ad Campaign
Today, I was emailing with my local CCFA chapter staff about how so many folks in the IBD community are disappointed by the new ad campaign, Escape the Stall.
She reached out to the national office to express how folks were feeling and to find out how they chose the bathroom stall as the focus of the campaign.
Here is the response that CCFA’s National Marketing Director sent back. One thing to note is that CCFA did focus groups with both patients and non-patients and both groups liked it during the groups. I know many of you still won’t be happy with the campaign but I hope it at least answers some of your questions.
WHY A BATHROOM?
It’s a fair question. Some people think of IBD as just one thing (going to the bathroom frequently), but it’s actually a lot more complicated. And sinister.People with IBD have to deal with debilitating pain, agony, and discomfort, as well as embarrassment. It’s not the same for different people, and it’s not consistent (some people have some symptoms, some one).
The campaign utilizes the bathroom for a simple reason: it’s easy to recognize. And sympathize! It helps people understand how difficult it is to live with IBD, while reminding people living with IBD that there’s no reason to hide a normal daily activity. That’s what this campaign is all about.
THE BATHROOM STALL IS A LITTLE OFFENSIVE. COULDN’T YOU HAVE MADE THIS ANOTHER WAY?
It was never the intent to insult anyone, or to belittle the condition. But talking about IBD is not easy. It’s already a difficult subject, rife with embarrassment and secrecy.By putting “the bathroom issue” front and center, we wanted to engage people, raise awareness, and demonstrate our commitment and compassion. All of CCFA is committed to battling this serious condition on multiple fronts.
And as one of our supporters (and IBD sufferers said), “If we can’t stand up to this condition, and be able to laugh at ourselves, we can’t expect others to.”
THIS CAMPAIGN DOES A POOR JOB AT EXPLAINING MY EXPERIENCE WITH IBD!
We understand that not everyone is going to agree with a provocative campaign like this. We expected for some people to disagree with the imagery but we have really worked hard for the past year to create a memorable campaign for the general public who know very little about these diseases. If we are successful in gaining support, we all benefit. Our primary goal for this campaign is to raise funds for research and that can only happen through public awareness.
Caring for Crohn’s Affordable Care Act Primer Part 3:
In the third installment of the Caring for Crohn’s Affordable Care Act Primer, I explore the aspects of the law that affect those 65 and older.
The Affordable Care Act is designed to strengthen Medicare, make preventive services affordable, and close the “donut hole” (discounts on medications that fall in the coverage gap.
CCFA’s New Ad Campaign: A bold, honest approach to raising awareness
I think I might be in the minority when I say that I think CCFA’s new ad campaign is brilliant.
I understand why some folks aren’t fans of it- it makes it look like IBD patients spend a lot of time in the bathroom. But the reality is that they do. That’s a fundamental thing that people don’t understand about the disease.
Attention NYC-area IBDers: Awesome Vintage Clothing Fundraiser Feb. 18-20
I cannot tell you how excited I am to tell you about this AWESOME fundraiser next month.
My brother-in-law’s girlfriend and her twin sister have their own awesome vintage clothing line called The Vintage Twin. They rework vintage pieces. But what’s even cooler is that each piece is unique – there is only one of everything.
Well, The Vintage Twin holds pop-up shops in NYC throughout the year and gives 10 percent of the proceeds to a charity. In the past, they’ve donated to Hurricane Sandy Relief and to Autism Speaks. Well, from February 18-20, The Vintage Twin is holding their next pop-up shop and donating 10 percent of the proceeds to the Crohn’s & Colitis Foundation of America (through my annual fundraising efforts for them). This is a special event for The Vintage Twin as well because their uncle has Crohn’s Disease.
How awesome is that!
So if you live in NYC, CT, or NJ, or want an excuse to road trip out to the east coast to buy some awesome reworked pieces and give to CCFA, here are the details:
WHEN: February 18 (President’s Day) – February 20 from 12 – 9PM all three days
NOTE: I will be at it on the 18th and would love to meet all you Tri-State IBDers!
WHERE: 45 East 34th Street, 3rd floor, Between Park and Madison, NYC
Hope to see and meet a lot of you there!
The ABC’s of Crohn’s & UC: “R” & “S”
I can’t believe we are almost at the end of the alphabet! There will be one or two more posts after this one and then my glossary of Crohn’s & Ulcerative Colitis will be completed. But before we get to that point, we have a few more letters to get through.
Tonight, we tackle R & S.
Caring for Crohn's & UC 