An Oasis for Kids with IBD

The Oxford English Dictionary defines “oasis” as the following:

“A place or period of calm or pleasure in the midst of a difficult or hectic situation; a place of relief, a refuge.”

When looking at this definition, it is clear that the Crohn’s and Colitis Foundation of America (CCFA) picked the right name for their camp for kids living with Inflammatory Bowel Disease, Camp Oasis.

“Camp saved my life. It was the first time in my life that I didn’t have to hide who I truly was,” Jessica Heirtzler said, a  23-year-old IBD patient who was diagnosed at age 8. “Everyone at camp- both campers and volunteers- taught me that Crohn’s isn’t who I am, but it is a part of me and I should embrace it. Camp Oasis helped me grow into a confident woman who accepts and loves herself for exactly who she is. I am now completely open about having Crohn’s disease and I have Camp Oasis to thank for that.”

Camp Oasis

As an adult I often think about my disease and what I miss the most. I always come to the same conclusion: normalcy. Camp Oasis helps kids who live with extraordinary circumstances feel normal.

Disney Channel Liv and Maddie actor Benjamin King, a Crohn’s disease patient, echoes this sentiment.

“Dealing with Crohn’s as an adult, I know how difficult it can be to cope with this disease. I can’t imagine how hard it must be for children to live with the debilitating pain and uncertainty Crohn’s and ulcerative colitis can cause,” King said. “As a father, I’ve seen firsthand the benefits that summer camp has on children. The existence of Camp Oasis to give children with Crohn’s and colitis a safe environment to come together and bond over a shared experience is tremendous.”

11895208_875551942530685_4867754905188014262_oWhile I haven’t personally experienced Camp Oasis, people I trust have expressed what a truly amazing, inspiring and therapeutic experience the week-long experience is for campers, counselors and volunteers. And while many Americans are trying to keep warm these days, it’s time to look forward to summer.

Applications are now open for Camp Oasis’s 2016 summer sessions. CCFA runs many 12 week-long camp sessions across the country, attracting not only campers but also hundreds of volunteer counselors and medical professionals. The best part is that CCFA underwrites 65 percent of the cost of camp attendance, and scholarships are available for campers-in-need. If this is where my Take Steps money is going, than that’s completely fine by me!

Below is a list of Camp Oasis’s 2016 summer sessions. Click here for more information about the program.

Camp Oasis of California
Session Dates: Monday, June 20th – Saturday, June 25th
Host Site: Camp Ronald McDonald for Good Times – Mountain Center, CA

Camp Oasis of Colorado
Session Dates: Sunday, July 10th – Friday, July 15th
Host Site: YMCA Camp Shady Brook – Deckers, CO

Camp Oasis of Georgia
Session Dates: Sunday, June 19th – Friday, June 24th
Host Site: Camp Will-A-Way – Winder, GA

Camp Oasis of Michigan
Session Dates: Sunday, July 10th – Saturday, July 16th
Host Site: YMCA Camp Copneconic – Fenton, MI

Camp Oasis of Minnesota
Session Dates: Monday, July 25th – Saturday, July 30th
Host Site: One Heartland – Willow River, MN

Camp Oasis of Missouri
Session Dates: Sunday, August 7th – Sunday August 11th
Host Site: YMCA Camp Lakewood – Potosi, MO

Camp Oasis of New York
Session Dates: Tuesday, August 16th – Sunday, August 21st
Host Site: Camp Scatico – Elizaville, NY

Camp Oasis of Pennsylvania
Session Dates: Monday, August 15th – Saturday, August 20th
Host Site: Camp Nock-A-Mixon – Kintnersville, PA

Camp Oasis of Texas
Session Dates: Saturday, August 13th – Wednesday, August 17th
Host Site: URJ Greene Family Camp – Bruceville, TX

Camp Oasis of Washington
Session Dates: Sunday, June 26th – Saturday, July 2nd
Host Site: YMCA Camp Colman – Longbranch, WA

Camp Oasis of Wisconsin
Session Dates: Sunday, August 14th – Friday, August 19th
Host Site: Lutherdale Ministries – Elkhorn, WI

Camp Oasis of West Virginia
Session Dates: Tuesday, June 21st – Saturday, June 25th
Host Site: Camp Tall Timbers – High View, WV
11958296_875567895862423_2388311100840254785_o

*Photos via CCFA’s Facebook Page.

January 15, 2016 at 10:12 am Leave a comment

Congress Commits Funding to Find a Cure for IBD

While a mention of the United States Congress is often met with an exacerbated sigh, we IBDers and caregivers have a reason to thank our Congressmen and women this new year. The week prior to Christmas, Congress gave us a gift by passing the Fiscal Year (FY) 2016 spending bill. The bill included $32 billion for the National Institutes of Health (NIH), which funds important medical research on a wide array of illnesses, including inflammatory bowel diseases. This is funding increase of $2 billion from the previous year represents a significant commitment by Congress to finding cures.

In the bill, Congress also supported the Inflammatory Bowel Diseases Epidemiology Study in the Centers for Disease Control and Prevention.

While this sounds all great on paper, I wasn’t sure what exactly this meant for patients like me. To answer my questions, I spoke with Sarah Buchanan, Director of Advocacy at the Crohn’s and Colitis Foundation of America, for more information. Here’s what I learned:

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January 5, 2016 at 9:59 am Leave a comment

Commuting with Crohn’s or Colitis

One of the tough parts about being “stuck in the middle” with moderate Crohn’s Disease or ulcerative colitis is having to get up and go to work each day, regardless of symptoms. Depending on where you live and work, there are varying degrees of difficult commutes. Unfortunately, I live in New York, which not only boasts the longest commutes in the country but I also live in the borough of New York that has the longest commute in the city. By moving my job to lower Manhattan, I’ve cut my commute to about an hour and ten minutes, which is better than my hour and forty five minute commute I used to have when my job was in midtown. It still is pretty terrible.

Despite my diagnosis in my senior year of college, I’ve been dedicated to advancing my career. I have tried to not let my disease stand in the way of my career in public relations. Therefore, I have learned to cope with my commute and being away from both the comforts of home and a restroom.

Waking Up

I wake up a minimum of an hour and a half before I have to leave. If I have to shower, I wake up at least two hours before. Because I need to be at my desk by 9am and I stop for a cup of coffee, that means I need to wake up by 5:30am on the days I shower. I do this because my disease is the most active in the morning. On average, I use the bathroom three to four times before I ever step foot out the door in the morning. It takes a lot of time to settle my stomach down but I have the process down to a science. And this is when I’m feeling well and not in a flare up.

Getting Out of the Door

I start checking NYC’s Metropolitan Transit Authority (MTA) Bus locator app about a half hour before I leave my house. I track a bus that I need to catch and I follow that until I know I need to be out the door to make it in time. This is the make or break moment of my commute. At least once a week I’m at the point I need to be out of the door, I take one step outside, and turn back around to use the bathroom one last time. It always results in me missing my connection and being late.

Getting there too early isn’t really an option either. I tend to get in my own head if I’m there too early, and often times end up running home to use the bathroom or a local establishment. Unfortunately my only options are a gas station, 7/11 convenience store and a Walgreens. I usually rotate those options so I don’t inconvenience one more than the other. At Walgreens I need an employee to open the door for me so I only go when it’s a small emergency.

On the Bus

Once I’m on the bus, the panic continues. The traffic in the summer is significantly lighter, thankfully, because schools are out. But normally I’m sitting in quite a bit of traffic and I worry constantly. At each stop of my bus, I have a plan of action to get to a restroom. When I used to commute via subway, it was the same. “If I have to get off at Rector Street, here are the closest public restrooms,” I would repeat to myself.

The bus is also ridiculously crowded at all times. On some days I get a seat and on others I’m left standing. If I’m sitting I normally can calm myself down, do my breathing exercises, pull out my phone to distract myself and get to my destination. When I’m standing I cannot do that and my nerves often get the best of me. Even worse, when I’m standing and people are on top of me I get claustrophobia on top of everything else. I’ve been known to abandon a bus because of crowds, only to get on another, more crowded bus.

On certain days I want to ask for a seat in the disabled section, but I always feel funny because I do not have a visible disability. As it is, when I was nine months pregnant nobody offered their seat for me, so I can’t imagine anyone would be enthusiastic about giving me their spot. I’ve seen people with canes and the elderly stand, so what gives me the right to that seat?

Staten Island Ferry

The Staten Island Ferry is my safe haven. Once I get to this part of my trip, I breathe a little easier. Why? Both terminals (the Staten Island and Manhattan sides) plus the boats themselves have restrooms.

Just because I’m on the ferry doesn’t mean I’m in the clear. Even though the boats and terminals HAVE restrooms, doesn’t mean that I want to use them. They’re pretty gross, to be quite honest, and there are often homeless people hanging out in there and lines of impatient commuters waiting their turn.

Also, thanks to the weather, my experience on the Staten Island Ferry varies greatly. The heat exacerbates my ulcerative colitis. There is no air conditioning on the Staten Island Ferry, but on most days the ocean breeze is enough. On other days, the humidity truly gets to me and my stomach and joints immediately start hurting. I am worthless on those days, both at the office and at home. Luckily at home, I have my husband to pick up the slack. At work I’m not so lucky.

Walking to Work

Once I’m off the ferry I’m back in the grind. This is where I used to depart into the depths and onto the subway. Luckily now I work close enough that I have a twenty minute walk to work. While this is great, it does have its drawbacks. First, if I need to use the restroom I have to find a place that will allow me to do so. New York failed (yet again) to pass the Restroom Access Act, leaving the choice up to the many businesses that I pass along the way.

Second, when the weather is lousy I am left to the elements. There is no easy way to get to my office using public transportation and few cabs during rush hour. In the winter months my bones ache and as I mentioned before, during the summer months the heat really bothers me.

Bottom Line

Commuting with Crohn’s Disease and ulcerative colitis is not fun; in fact, it’s miserable. What I’ve described to you is the commute I do five days a week ONE WAY. It is my commute routine that I do while I am well, and during what I consider remission. I’m sure you can imagine how much worse this can be during a flare up.

I do not write this for your sympathy, nor to say my commute is better or worse than others. It is simply an insight into what patients like me go through on a daily basis. It isn’t easy to manage, but we really have no choice. In order to live our lives, it is a necessity.

How do you manage your commute? Tell me in the comment section below or connect with me on Twitter @RoeMoPR.

July 22, 2015 at 10:00 am 3 comments

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

Why I Take Steps

This past Saturday my family and friends proudly walked around Clove Lake Park in Staten Island behind a “MVP Team – Relief for Rosanne” banner. We had just received the Second Place Fundraising Team Award for the third year in a row at the Crohn’s and Colitis Foundation of America’s (CCFA) Take Steps Walk.

2015 Team Relief for Rosanne

 

During our walk on that beautiful day, I couldn’t help but to reflect on far I had come. I didn’t attend my first Take Steps walk. A couple of years after my diagnosis my mom went and walked with a coworker’s team in New Jersey. She reported back to me that it was a wonderful event and that I should attend the following year.

I thanked her and told her I’d consider it, when in actuality attending the following year was the last thing I wanted to do.

I was uncomfortable with my diagnosis. I didn’t tell my classmates what I was going through. Instead of going out with my friends and possibly having an episode or accident, I told them I didn’t feel like going out. Talking about ulcerative colitis, or my symptoms, wasn’t an option.

That was, until I participated in Take Steps New York City in 2010. When I showed up at the South Street Seaport for my first Take Steps walk, I was immediately speechless. I could not believe that there were that many people impacted by Crohn’s or ulcerative colitis. Everyone was cheerful yet purposeful. I heard children at least a decade younger than I was speaking freely about their conditions and about their battles.

I had a chance to speak to some of the best IBD specialists in the tri-state area in the doctor tent. I heard about the wonderful work the CCFA was doing to fight for restroom access in the mission tent. I laughed out loud for the first time in a long time when I saw children tossing toilet paper into toilet seats. I was touched when my teammates, who knew what I was going through, reached a new level of understanding thanks to the many patient advocates in attendance.

As much as the New York City walk meant to me, when the CCFA Greater New York created the first annual Take Steps Staten Island walk three years ago, Take Steps became even more of a personal mission. Our first walk was a modest one. From the naked eye, I would say we had 75-100 participants and the whole walk didn’t net as much money as some of the teams from the New York City walk. However, I was home. I was walking with my neighbors with an underserved IBD community.

It was amazing to me this year to look out and see all the new faces. While this is depressing to some – to see more people affected by these terrible diseases – I knew they were there all along hanging in the shadows as I once was.

I also hit a personal goal this year: for the first time, I shared information about my disease and the walk with coworkers. Many showed their generosity and donated to my team. However, the most important moment for me was when I began to get emails back:

  • I had no idea you were going through this. Can you take medication?
  • I didn’t know about ulcerative colitis. I looked it up after your email.
  • How did you manage your pregnancy with this disease?

Advocacy. Friendship. Awareness. Information. Finding a cure.

This is what Take Steps means to me. I’m so thankful for the CCFA for Take Steps and for all the terrific work it does.

Team Relief for Rosanne raised $4,400 this year. Read more about the team on the Take Steps website

June 3, 2015 at 10:30 am Leave a comment

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