Posts Tagged by ulcerative colitis

How One Day Can Change Your Life

Here I am…on the longest flight I’ve been on in over 10 years, writing to you at over 36,000 feet.  I’ve shocked myself today.  I woke up focused and had very minimal anxiety getting to the airport and even boarding the plane.  Maybe I was just THAT tired or maybe I’m actually dealing with this better.  I took an Ativan once seated so I could take a nap for a while, but that only lasted about 1.5 hours and once again…I’m ok!

This all might seem silly to a lot of people…this fear of flying thing, but it really is rooted in a not so pretty place that I’ve never gone into detail about here.  You see, I wasn’t always liked this.  I LOVED to fly when I was younger.  I traveled all over the U.S. including San Francisco, San Antonio, and Denver.  I traveled internationally to England, France and even spent 2 months abroad in Ireland.  Traveling was exciting…so many opportunities are available once you step off that plane!  

But when I was 21 years old, the world changed….September 11th happened.

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On that day I was living 5 blocks from the World Trade Center in a studio apartment at 33 Gold Street.  I had just started my final year at New York University and I was working in the Box Office at the Hammerstein Ballroom, one of the top concert venues in NYC at the time.  To say I was loving life was an understatement.   Well you know the story of the day so I won’t rehash that business, but to say the events greatly effected me is an understatement.  And it didn’t happen right way either…  

Soon after 9/11, I traveled quite a bit…to England, Arizona, Florida…but with each trip my anxiety grew.  I moved out of the city to Hoboken, NJ across the Hudson river, but I was still commuting in for work and school every day.  Soon I started having trouble on the subway, going through tunnels and being on bridges.  This is a problem when you have to use at least one of those things to get in or out of NYC.  My fear of being trapped, like I was on 9/11, was becoming overwhelming and crippling.   

I ended up having to leave NYC because the stress of having to go there everyday was too much.  Well that wasn’t the ONLY reason, but it played a large part in our decision to move to CT.  However the problem with that was now that I no longer had to face those fears everyday, my reactions were 1,000 times worse when I actually did.  I would have a full on panic attack driving over the George Washington Bridge.  I wouldn’t take the train into NYC or take the Subway for almost 8 years.  Getting on a plane was out of the question.  B and I actually DROVE to Florida for our Honeymoon…it’s amazing that man actually married me.  And the worst thing about all of this was that it was affecting my health because all of that stress would cause my UC to flare on a regular basis.

It was after that long drive to Florida that I finally woke up.  I couldn’t live my life like this anymore…I was missing out on LIFE!  B also turned to me and said, if you ever want to go to Disney again we are flying.  Well that right there is motivation enough to change! 🙂  With the help of a low dose of anti-anxiety medication and the will to face my fears, I am slowly working through all of my fears.  I’m not ashamed to admit that I need help here…

Now look at me.  As I finish writing this, I am sitting in my hotel room at the Disneyland Hotel after taking a non-stop flight from NY to LA.  That’s almost 6 hours on a plane people!!  I am having a blast at The Happiest Place on Earth with the love of my life and later this week I get to go the the CrossFit Games!!  How could I have denied myself these experiences?  

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I’m not saying it’s easy, it’s far from it!  Last week I had a panic attack just thinking about traveling, but I’ve learned how to calm myself down and try to relax a bit.  Exercise really helps!  I’ve also learned that talking about it helps.  Sometimes you just ned to get all the crazy out because you otherwise feel like this…

Sarah-Disneyland-2014-Wild-Animal

So there’s the backstory to all of the anxiety-ridden posts you’ve seen and probably will continue to see over time.  It’s amazing how that one day almost 13 years ago completely changed my life, but looking back now it has only made me stronger.  I’ve had to overcome some major shit, but I’ve been trying to do it with a smile.  🙂   

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Team Challenge: Running for Family

I’ve always been very open about my struggles with Ulcerative Colitis…it sucks, big time! In 2012, I ran with Team Challenge and helped to raise money to support the Crohn’s and Colitis Foundation of America.  When Jessica reached out to me to let me know she was doing the same thing this year, I was thrilled!  It’s a wonderful racing team to be a part of and any bit of fundraising helps.  She offered to share her story on why she is running this year…  

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I’m so honored to write a blog post for Sarah. I’ve followed her Running at Disney blog since the beginning. I read a few years ago about her experience running the Virginia Wine Country Half Marathon and was very inspired. Little did I know, that I would have a personal reason to be a part of Team Challenge so soon.

I started running seriously in 2009 training for the 2010 Walt Disney World Half Marathon. Since then, I have run 16 other half marathons and 6 full marathons including 2 Goofy Race and a Half Challenges, Disney’s Wine and Dine Half Marathon and the Dopey Challenge this past January. The half marathon I am running this July will be the most meaningful one of them all. I am running the Napa to Sonoma Wine Country Half Marathon on July 20th for Team Challenge. Team Challenge raises money for the Crohn’s and Colitis Foundation of America (CCFA).

Until a few years ago I had no idea what Crohn’s or Ulcerative Colitis (UC) were. That changed forever in 2012. Ever since the birth of my nephew in 2010, my sister had been having trouble with cramping, diarrhea, and other intestinal issues on and off. By the summer of 2012, she had made so many trips to the emergency room, she lost count. Her Gastrointestinal Doctor diagnosed her with UC and planned on starting medicines to start trying to reduce the flares. In August, my family was scheduled to come to Atlanta for my baby shower from Maryland and right before the trip, my sister got a bunch of sores in her mouth. ANOTHER trip to the ER ended with the diagnosis of Hand, Foot and Mouth Disease and she was sent home with some “magic mouthwash”.

She didn’t make the trip to my baby shower with the rest of my family and by the time my mom got home to her, she was very malnourished and not improving at all. One call to the GI doctor later and they were back on their way to the hospital. This time she was admitted.

Elizabeth before her life saving surgery

Elizabeth before her life saving surgery

The placement of her PICC line, intending to give her nutrition and medicine saved her life. The x-ray to double check the placement of the PICC line showed that her large intestine had already perforated in multiple places. The doctor said if she was at home much longer, she wouldn’t have made it to the hospital. Getting the call from my dad that she was headed into emergency surgery to have her entire Large Intestine removed was the scariest call of my life.

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A few days after surgery

That same night I was searching the internet for support groups and stumbled upon the Team Challenge Website. A running group that fundraises for the disease that almost just took my sister from me? This is what I needed to do. So this past January, I went to a meeting and was so excited about the wonderful things CCFA does! Their mission is: To cure Crohn’s and Ulcerative Colitis, and to improve the lives of children and adults affected by these diseases.

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My sister and I

Crohn’s and Colitis hit my family twice that year. My uncle was diagnosed with UC in the spring of 2012 and also ended up having an emergency colectomy. He now has a J-pouch and has his Colitis under control.

The great news is that my sister is on the road to recovery and living her life to the fullest. She is an amazing mom and enjoys spending every moment with her son Emmett.

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In fact she even started running herself!  She completed the Disney Family Fun Run 5k over Walt Disney World Marathon Weekend this past January.  

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I am so thrilled to contribute in my small way toward this wonderful cause. I want my sister, uncle and all of the other people I’ve met to find a cure and live full, healthy lives.  If you want to donate, please go to my Team Challenge fundraising page. Thank you so much, the money goes to such a good cause.

If you want to read my sister’s adventure through Crohn’s, Colitis and her ostomy, her blog is at mamasgotastoma.blogspot.com 

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Jessica lives in Marietta, GA with her husband, 1 and 1/2 year old daughter and three crazy dogs. She runs to have a few quiet moments to herself and keep herself sane. Jessica’s favorite full marathon was the 2013 Marine Corps Marathon and favorite half marathon was an epic adventure with friends running the Wine and Dine in 2013.  Follow her on twitter here: @jesscutler.

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Big thanks to Jessica for sharing her family’s struggles with UC and for supporting CCFA to find a cure.  These are really hard subjects to talk about, but the more we do talk about them, the more awareness that will be created.

If you want to learn more about Crohn’s and Colitis, head on over to www.ccfa.org for more information and please consider supporting Jessica…she even has some fun things in store for your donation.

  • $10: She will send you a Blue rubber bracelet that shows your support of the Crohn’s Disease and Ulcerative Colitis foundation of America.
  • $50: She will write your name on the back of her jersey to share your support with everyone. 
  • $100: You can sponsor a mile of her race.
  • $200: She will make a “flat Stanley” character of you and take pictures along the course and send them to you after the race.  

Thanks again for the support and one day we will find a cure!!

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As A New Year Begins…

As 2013 came to an end, I couldn’t help reflect on all of the good, the bad and the ugly that has gone on this year.  I’m not one for resolutions, in fact, I actually despise them.  It’s basically a way to set yourself for failure.  But I always like to look back, reflect and see how I can improve.  Here are the things that stuck out to me:

Strength & Fitness

I’ve been going strong with CrossFit for about a year and a half now and I really want to take it to the next level in 2014.  My progress have been kind of stagnant in many movements due to the tightness in my hips, but I am committed to work on my hip mobility at home and with my coach.  Look I even got my own WOD this week!

Sarah-WOD

This year I want to work on my form, particularly with snatches and overhead squats, I want to work on my double unders because they basically don’t exist now, and to FINALLY get a pull up.  3…2…1…GO!  

Health

I’ve been plagued with this crappy (pun intended) disease and for the past few months it has gotten the best of me.  It has consumed my thoughts, my emotions and my overall feeling of wellness.  It’s really hard to not let that happen, especially after dealing with it for over 10 years with no end in sight.  My doctors have recommended that I try Humira, but I just don’t feel like it’s the right thing for me right now.  

Persevere

So I’m going to overcome it this year.  I can’t get in a funk like this again…I just can’t because it actually makes my symptoms worse.  If I have a flare, I will deal with it head on.  I will focus more on my food and try to pin point what if anything is affecting me.     

Smile & Explore

I have an amazing family and live in a beautiful area.  B and I tend to waste our weekends away at home on our computers or in front of the TV.  There is so much out there that we haven’t experienced and I want to make a point to get out there (when it gets warmer of course!) and enjoy it!

Sarah-Barry-EpcotOn the list for this year:

All of these are within 3 hours from home…so what’s my excuse??

I want to make this a great year and I hope you’ll come along with me for the ride!

What do you want to do this year?

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Crohn’s and Colitis Awareness Week

C&C Awareness Week

Hey it’s Crohn’s & Colitis Awareness Week!  Who’s excited?!?!?  No??  Ok, well it’s not really “exciting” but it’s a great opportunity for more people to learn about these diseases.  Did you know that according to the Crohn’s & Colitis Foundation of America (CCFA) “the estimated direct cost for all patients with inflammatory bowel diseases (IBD) in the US is $1.84 billion”?  That’s a lot of money!  So the hope is that with more awareness and support to help find a cure, not only will it save the country a ton of money but it will safe millions of people from suffering every year.

Here’s what I did to get my UC checked out toady…I swallowed this lovely thing…

Capsule

More on that later.  But for now, want to know a few quick things you can do to to help raise awareness?  Here are some easy options:

Want a bigger challenge?  Sign up with Team Challenge and run a half marathon…I did it and it was awesome!

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So get out there and show your support!  Hug someone with IBD today…it’ll mean a lot to know you care 🙂

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On the Bright Side, Maybe I’ll Lose a Few Pounds?

That was my thought process earlier in the week when I started to prep for the colonoscopy I had yesterday.  As I mentioned last week, I’ve been having some not so fun health issues that relate to my Ulcerative Colitis (UC) and this procedure was imminent.  I’ve been trying to stay positive and not worry too much about what’s going on, but as hard as I’ve tried there just seems to be this black cloud hanging over me for the past few weeks.  I just wanted to get this over with, get some answers and move on.

While the procedure itself if no big deal, the day before is no picnic.  I’ll save you all the lovely details, but it involves fasting with clear liquid only, drinking a ton of stuff to “clear” your system out, and a lot of time in the bathroom.  Fun times!  

Gatorade-Prep

Notice I labeled the bottle…didn’t want B accidentally grabbing some.  My morning was spent in bed cuddling with cats while I waited to leave.  I hate when these things are scheduled for mid-day.  I rather get up early and get it over with!

Cuddly-Cats

Besides all the prep the worst part of any procedure for me is the IV.  I am a big baby when it comes to needles and tend to pass out.  So the nurse had me lie down on a giant chair in a tiny room to avoid that from happening.  It was actually quite comical to watch them maneuver around.  I have tiny veins on a good day, but considering that I was dehydrated from the prep it was becoming difficult to find a good one.  Just what I wanted to hear.  However in the process, the nurse noticed my Barbells for Boobs bracelet and said she saw the coverage on the news and that it looked like a really fun event!  Cool 🙂  

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On the second try, they got the IV started and I didn’t pass out…yet….

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I know you’re totally jealous of those super fashionable socks I got to wear.  Don’t lie!  So I was feeling fine and getting rehydrated, so they put my chair back down and gave me a warm blanket.

IV-Bag

That’s when the dizziness started, my ears started ringing and the faintness started coming on.  Not sure what happened, but the nurse saw my face and promptly put the chair back down and rubbed my head with a cool cloth.  I’m such a wuss…

Passed-Out

Trying to keep my sense of humor…

The procedure went well and thankfully I didn’t wake up in the middle this time.  Yeah that happened last time…not fun.  Good news is my colitis has not spread up my left side and there were no signs of polyps or cancer.  Not so good news, I might be showing signs of either an infection or the beginning of Crohn’s.  Not so fun.  I have an appointment with my doctor in about a week to go over the results and talk about my medication options.  I’m voting for steroids over immuosuppressants, but we shall see.

Having not eaten for about 36 hours all I wanted to do was stuff my face.  We hit Chipoltle on the way home and I got a burrito bowl with ALL THE THINGS.  

Chipoltle

The rest of my day consisted of naps and more cat cuddling in front of the pellet stove.  I mean really, they are the best nurses! 

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Today, I’m not feeling 100%.  I started running a fever last night and was very achy.  A few Tylenol seemed to break the fever, but I’m still feeling sluggish and tired.  Besides that, I am emotionally feeling a lot better about things and hopeful that I can now start on the road to remission after having all of these tests done.  Because of the possibility of Crohn’s, I might have to do a capsule endoscopy next to get a look at my small intestines and see if there is any inflammation in there.  That should be interesting…  

Oh and I did end up losing about 4 pounds in the process, so that’s a bonus 😉

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