Author Archive
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.
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.
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 