Author Archive

Big Caring for Crohn’s Announcement

Dear Readers,

I am writing with some exciting and bittersweet news for you.

I recently accepted a position with the Crohn’s & Colitis Foundation of America to work on its social media and public relations efforts. I have been heavily involved with CCFA for many years, first through its Take Steps community walks and then through its Team Challenge endurance training program. I greatly enjoyed my experiences with these programs and am incredibly excited about this new opportunity to work with the national organization that is working tirelessly to find a cure for Crohn’s disease and ulcerative colitis and improve the lives of the 1.6 million Americans living with these debilitating diseases.

While this new move is extremely exciting for me both personally and professionally, it is also bittersweet. I will be taking a hiatus from Caring for Crohn’s and turning the reigns over to Rosanne in the interim. I will miss engaging with all of you on here but I am confident that I am leaving you in the best of hands.

Once I am more settled in this position, I will update you on the future of Caring for Crohn’s.

With love,
Rebecca

July 7, 2015 at 7:18 pm Leave a comment

Hey New Yorkers: Take Action to Ensure Restroom Access!

I’ve written before about the Restroom Access Act (Ally’s Law) and how important it is to get it passed in states across the country in order to ensure that patients with inflammatory bowel disease and other illnesses are able to access employee only restrooms in stores when a public one is not available.

Well New York, it’s your turn to act!

Restroomaccess

In 2013, the New York State legislature attempted to pass the Restroom Access Act but it was never brought up for a vote. Earlier this year, Assemblywoman Amy Paulin (D-88) and Senator Kemp Hannon (R-Nassau) introduced the bipartisan Crohn’s and Colitis Fairness Act in the New York State Assembly and Senate. If passed, this bill would amend New York State public health law to provide individuals with “Crohn’s disease, ulcerative colitis, irritable bowel syndrome, or any other medical condition that requires immediate access to a toilet facility” access to employee-only bathrooms when a public one is not available.

Sounds great, right? It would be, but it won’t pass without your help.

On June 17, 2015, the New York State Senate will vote on the Crohn’s & Colitis Fairness Act. In order to gain support and ensure that we get as many votes as possible, we need to join forces with the Crohn’s & Colitis Foundation of America to lobby our legislators to support this bill. So if you live anywhere in New York, here’s what you need to do between now and June 17:

  • Identify who your New York State Senator is here (if your Senator is Senator Hannon or bill cosponsor Senator Simcha Felder, email them and thank them for their support!)
  • Either email them, call their office or visit and ask for their support of S4918, the Crohn’s and Colitis Fairness Act
  • Ask your friends and family to do the same
  • Don’t live in New York? You can still help by reaching out to New York State Senate Leadership and urging them to support the bill

Taking action takes less than five minutes. To make it even easier, here are two draft emails that you can use to send to your legislator:

Crohn’s and Colitis Fairness Act Letter

CCFA Template Letter

It’s up to you, New York, to make this bill become a law.

June 10, 2015 at 4:06 pm Leave a comment

Living in the in between

For me, the worst part of being the caregiver of someone with a chronic illness and also a patient myself is living in the “in between”- the grey area straddling the line of good and bad, healthy and sick. I am a bit of a control freak (I know, shocking) and get very agitated when I can’t anticipate what’s to come and can’t adequately plan for the future. Ask anyone who knows me- I am the captain of to do lists (and if they aren’t written neatly enough, I’ve been known to rewrite them) and timelines. Professionally, this makes me great at my job because I am always on top of my work and I can multitask incredibly well. But personally, it is a huge source of angst.

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June 9, 2015 at 2:16 pm 1 comment

Reblog: Crohn’s Kills – Warning This Headline Is Clickbait, but the Message Inside Is Important

Today’s post is a reblog from my friend Jaime’s blog Pretty Rotten Guts. Last week, one of her best friends, who had Crohn’s disease, passed away and this post was written in the days following her passing.

Last week, one of my very best friends, personal cheerleader, over-the-phone nurse, confidant, and late night infomercial watching buddy passed away. Over the past few years, she fought an extremely long battle against her body. She had Crohn’s disease. While many would argue she passed from Crohn’s disease… that isn’t exactly what took her away from us. I’ll explain.

When I was in high school, before my Crohn’s got too out of hand to maintain a regular in-class workload, I was on what was referred to as a nursing track. This freshman course consisted of learning basic nursing concepts, terminology and anatomy. I loved it. And one day we got to study diseases. Our instructor, a longtime nurse and college instructor, explained to us how sometimes it’s not a disease that kills someone but a complication from that disease.

One example she gave was of an AIDS patient who had cancer. How do you determine cause of death? Sometimes it’s as simple as saying cardiac failure. If you need to go into further detail it can be cardiac failure due to end-stage cancer or possibly end-stage AIDS depending on the symptoms leading up to the death. But unless there is an autopsy you go with the general — heart failure.

Many people over the course of this past week have asked the same questions, “How old was she?” and “What did she die from?” and I want to so badly respond the way she would.

It would have gone something like this: “… age? No.” And “… die from? Stubbornness!”

Both responses would have been uttered in a thick Boston accent, quickly followed with a laugh and a coy smile.

As for her COD, well I don’t think many who knew her would disagree with stubbornness as a cause, but in reality she was in heart failure due to a dangerous clot that eventually dislodged. The clots were caused from an infection. This infection had become her arch nemesis next to Crohn’s disease. More than likely her Crohn’s and surgeries caused by the disease led to her declining health, but it was the infection and its clots that were too much for her to overcome this time.

I along with a few friends have been on guard for most of the week anticipating people who really didn’t know our friend to start positing her face amongst purple ribbons and candles, inspirational quotes, or phrases like Crohn’s Warrior, or purple butterflies referencing flying with angels or other butterflies. She hated with a capital H-A-T-E-D that stuff. Thankfully, not too much of that has happened. However, the few who have disrespected our request to remove the purple swag have made it pretty painful to deal with.

Our friend was such a private a person that we didn’t learn of her actual age or birthday *gasp* until we caught it on a picture of a hospital bracelet that she forgot to crop out before sending it to us. She accepted defeat graciously.

I truly do not feel right typing this story out; it doesn’t feel real. Several friends have texted the question “Is this real?” over the past week, and each time I have to respond back to them, “Yes, very”.

I guess I’m writing this for two reasons — partly to diminish the denial that many of us are still feeling; as well as a way to lay the facts out while keeping her dignity intact, because so many people have questions and let their minds wander.

To put it simply we can all agree that the clot caused her death. It wasn’t just Crohn’s disease alone that took her away.

Whenever a young- and vibrant-looking person with a like disease who is somewhat known in an online health community passes it becomes a very sensitive time for all community members. Even those who didn’t personally know the person (who has passed on) take this loss very hard for their own personal reasons. Grief knows no boundaries.

These losses leave everyone (patients, as well as their friends and family members) emotionally raw; vulnerable even. It’s not out of the ordinary for them / their loved ones to wonder “Could it happen to me / them too?”

In short, more than likely it will not happen. Crohn’s isn’t known for taking lives in the same manner many terminal diseases are. Months ago, our friend made a flyby comment that she “could just as easily get hit by a bus instead.” I was neither amused nor comforted. This comment came from someone who had beaten the reaper a few times already. So, I would like to emphasize to those of you out there in our Inflammatory Bowel Disease (IBD) Community — regardless of having Crohn’s disease or ulcerative colitis — Crohn’s can contribute to someone’s death, but IBD doesn’t have a high mortality rate. It just doesn’t.

So, if you see a post online, or an article floating around that says something like “Crohn’s Kills” or “Crohn’s has taken the life of another warrior..,” go ahead and take what you just saw with a grain of salt and know that there are multiple circumstances involved.

Don’t forget to check out Jaime’s blog here.

May 29, 2015 at 12:30 pm 1 comment

Recap from IBD Social Circle

As I mentioned previously, I recently spent four days in Washington, D.C. as part of the IBD Social Circle, sponsored by Janssen Biotech. The IBD Social Circle is the online movement dedicated to bridging communications gaps and inspiring and educating the IBD community. It was formed a year ago with seven activists and is now comprised of a group of about 20 IBD activists from across the country.

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May 28, 2015 at 11:30 am Leave a comment

Introducing New Caring for Crohn’s & UC Contributor!

Keeping a blog current takes a lot of work and content. As many of you know, I’ve had a lot of trouble writing as often as I should in order to keep the blog up to date. After a lot of thought, I decided that I could use help writing on the blog and interacting with Caring for Crohn’s readers.

So I am incredibly excited to announce that my friend Rosanne will be joining Caring for Crohn’s as a new contributor!

relifeforrosanne

I first met Rosanne in 2013 through the Crohn’s & Colitis Foundation of America’s Greater New York City Chapter’s Communication’s Committee (man that’s a mouthful). Rosanne was diagnosed with ulcerative colitis in 2006. She is very active in the IBD community, not only on the communications committee with me but also as a volunteer with Staten Island support groups and a Take Steps participant. She is a public relations professional, a Disney enthusiast, and a new mom to an adorable five month old baby boy.

Rosanne will be blogging here about her experience with ulcerative colitis and as a new mom with an inflammatory bowel disease as well as general information about IBD. You can follow her on Twitter at @RoeMoPR.

Please join me in welcoming Rosanne to the Caring for Crohn’s family!

May 21, 2015 at 12:29 pm 1 comment

World IBD Day 2015- A Day of Thanks

Today, May 19, marks the observance of World IBD Day, a day led by patient organizations across four continents to raise awareness and educate the public about inflammatory bowel diseases. Around the world, more than 5 million people live with Crohn’s disease and ulcerative colitis, two debilitating digestive diseases that have detrimental effects on patients physically, emotionally, financially, and more. I know that my blog has been stagnant for months, but I figured today was a great day to return to it.

On World IBD Day last year, I talked about feeling defeated by the lack of progress being made for IBD patients. I was feeling pessimistic after the passing of a young IBD patient and a segment on a major news station that confused IBD with IBS. After a lot of thinking, I decided this year I wanted to be more optimistic.

I just returned from spending four days in Washington, D.C. as part of the IBD Social Circle, the online movement dedicated to bridging communications gaps and inspiring and educating the IBD community. While there, I got to spend time with some incredible IBD activists, like Ally Bain (the girl behind Ally’s Law/Restroom Access Act), Laura of Mangia Paleo, Brian of the Intense Intestines Foundation, Stephanie of The Stolen Colon, and so many more. I also was provided the opportunity to attend Digestive Disease Week, the world’s largest gathering of physicians and researchers in gastroenterology, hepatology, endoscopy, and gastrointestinal surgery. After spending a weekend surrounded by strong, passionate advocates and bloggers talking about Crohn’s disease and ulcerative colitis, I decided that this year’s post would be dedicated to thanks.

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May 19, 2015 at 2:35 pm 3 comments

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