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.”
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.”
While 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
*Photos via CCFA’s Facebook Page.
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:
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.
photo credit: grand-central-at-6-40 via photopin (license)
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.
photo credit: Staten Island Ferry via photopin (license)
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.
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
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!
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
It’s up to you, New York, to make this bill become a law.
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.
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.
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.
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.
Stuck in the Middle with IBD
When I was diagnosed with ulcerative colitis nearly a decade ago, I was told my case was “mild” and I should go on living my life. I had no idea what I was in for at that point. In fact, I was relieved to find out it was ulcerative colitis (which seems laughable at this point) after being told for more than five years that it was “all in my head” and I just needed to relax. I was told to take Asacol and resume my normal activities.
As it turns out (I’m sure you’ll be shocked by this) I couldn’t resume my normal activities. Inflammatory Bowel Disease (IBD) turned my life upside down. A few months prior to my college graduation from St. John’s University, I found myself unable to travel to take my finals and instead of jumping into the work force that I had prepared so hard for, I was just trying to get by.
Determined not to be slowed down by my disease, I applied to graduate school and got into my dream program at New York University. If I couldn’t work, I’d advance my career by getting my master’s degree. It was a great goal, but each day I was getting sicker, and I was deteriorating rapidly. I wasn’t eating, with fears of an accident during classes.
Four weeks into my program at NYU, I was waiting for the subway I noticed I could not turn my neck to check if the train was coming. I thought it was strange and mentioned it to my parents when I got home. A few hours later, when I got into bed, I couldn’t breathe. My family rushed me to the emergency room, where we quickly found out I had developed pneumonia from being so run down due to my flare up.
My return home after a week in the hospital was short lived. After a day or two, I couldn’t walk up the stairs without getting winded. A quick chest x-ray showed pneumonia in both of my lungs, which we later found out was caused by a hospital-acquired staph infection. I was rushed back to the hospital, this time to ICU, and was pumped with the strongest antibiotics available.
If you know anything about IBD, you know that antibiotics and digestive diseases make for a messy combination. In short time, I was diagnosed with C. Diff and I was back to the hospital for a third time. I had to withdraw from my semester at school and it took months to recover. I still have PTSD from this experience.
However, that was my only IBD-related hospital stay in a decade with the disease. I never had to have surgery for my IBD. None of my flare ups required an emergency room visit. That’s not to say I’ve had it easy. For a couple of years, I would flare up every three to four months. I would commute with the worst cramping you could imagine and my fatigue was impossible to overcome. I felt at times like a prisoner in my own home. Inflammation has popped up in my ears and eyes at various points. At the ripe old age of 27, I got shingles on my face.
Right before my wedding in 2011, I seriously considered having my colon removed, but it thankfully never came to that. My doctors found the right combination of Ascaol, Remicade and 6MP to manage my symptoms and I’m living a relatively normal life.
So why do I feel like I’m stuck in the middle? Like many patients, I look to the internet for support and a shoulder to cry on. On the internet I find amazing advocates who are doing so much to spread awareness and fight for patients. There is no price that can be put on the value of what they do. Yet their diseases are often significantly more progressed than mine. They are in the ER at a blink of an eye. Their chronic pain requires frequent surgeries and hospital stays. Some of the advocates I’ve followed through the years have even died from complications due to IBD.
Every time I go online to vent or complain about my symptoms, I find someone who has symptoms 100x worse than I do. I feel guilty…oh so guilty…for even thinking of complaining. I feel like I should be grateful that my disease hasn’t progressed beyond a certain point, but instead I am depressed that I don’t feel well enough to feel like myself.
I’m here to tell you today that you aren’t alone. Yes, you. You, who is well enough to work but feels exhausted all the time. You, whose IBD is progressed enough to be a pain in the ass (literally) but not enough of a pain to allow you to go on disability. You, who is flaring up and is in the bathroom 15 times a day but is still going to school. You, who is afraid to get in a car for fear of an accident.
You aren’t alone. You’re allowed to be in pain and you’re allowed to be pissed about it. Every day is a struggle for you. You learn to expect the unexpected with IBD. You may not live with a j-pouch or an ostomy, but you’re sick too, and it’s OK to grieve about your disease. CCFA’s “Escape the Stall” campaign wasn’t egregious to you because that’s the life you live every day.
I hope that I could be your voice. Thank you, Rebecca Kaplan, for inviting me to blog about IBD here. I hope that I do this group (that’s stuck in the middle just like me) justice. I invite you to let me know what you think in the comments section below or connect with me on Twitter @RoeMoPR.
Caring for Crohn's & UC 