Category: Ulcerative Colitis

Is Honesty Really The Best Policy?

It’s been one of those weeks…where words either bite you in the ass or slap you in the face!  Either way it stings…

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I had a jaw dropping encounter yesterday that stopped me in my tracks and left me on the verge of tears for quite some time.  It also left me contemplating not only the words of others, but MY words.  

Yesterday I went to CVS to pick up my monthly prescription of Mesalamine.  I’ve never been shy about talking about my Ulcerative Colitis.  I want to share my ups, my downs, my crappy days…literally.  I’ve found comfort in talking with others who struggle with this disease and I hope to do the same for others.  However being open about talking about my disease does not mean it’s cool for others to make jokes about it.  Most people are on an oral form of this drug, but not me.  It’s believed that the oral form is what 7 years ago caused Acute Pancreatitis, a life threatening inflammation of the pancreas…no bueno.  Since I can no longer take the medication systemically, I now have to give myself nightly enemas.  Yup…this has been my reality for the past 5+ years. Does it always work? No. Does it keep my symptoms at bay for the most part? Yes.  Have I ever declared this publicly? No. It has been something I’ve only shared with my close family and friends, and here is why…

Ok really?  Do I have to explain why?  There is something taboo in our society when it comes to talking about your bowel movements, which is kind of ridiculous because it effects ALL of us!  Yes, we all poop…let’s get over it.  Well maybe I should listen to my own advice.  

Back to picking up that prescription of 4 giant boxes of enemas yesterday.  Because of the stigma associated with it, it’s never the most comfortable experience, but over time I’ve just learned to deal with it.  That was until today when the dude behind the counter said, “What, is this all for a party?”  Really?!?!  You work at a pharmacy and this is what you say to someone??  I wish I had some witty comeback for him, but I was so shocked that all I managed to say was “I wish!”  Ugh.

I left as quickly as I could, got back to my car and was rattled.  I texted B to tell him what happened and he immediately had that witty response for the dude to made me chuckle, but I was still upset for most of the day, which got me to thinking…  That dude didn’t mean any harm, at least I hope he didn’t.  I think he was just trying to lighten an awkward situation, but just didn’t do it in the best way.  In a way, he was just being honest.  Which led me to start reflecting on my own honesty this past week.  

In the span of one week, I have managed to seriously offended two of my closest friends due to my honesty.  When I get close to people, I don’t hold back.  I share my true feelings and I’ve come to realize that it can be a bit harsh sometimes.  Maybe my delivery comes out cruel when it was meant to be joking, or maybe a truthful remark is just too harshly conveyed…I’m not sure.  Maybe that brutal honesty isn’t always the best policy, even if I think I’m just being funny, helpful, whatever….maybe it’s just hurtful.  Hurtful like the CVS dude was to me.

I have since apologized to my friends and hopefully they aren’t holding resentments (they told me they weren’t so I hope not!!!) but that doesn’t mean this past week hasn’t been an incredible learning experience for me. It’s important to choose your words wisely, especially with the ones you love because those words mean even more to them.  I would never purposefully hurt them…I love them.  However this doesn’t only hold true just for the ones you love…we should be kind and thoughtful to everyone, even that douchey CVS dude 😉  We all have our faults, but I hope and believe that most humans actually give a shit about each other and want to be kind.  But with that, does it mean that honesty isn’t always the best policy? 

I love my friends and family…more than I could ever express in words, but sometimes maybe too much where I say things that shouldn’t be said, or that could be just softened a bit.  I find it hard to find my filter at times, but all I can do is learn from my mistakes and keep getting better.

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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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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!  

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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!

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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.

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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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Welcome to My Pity Party…

I’ve been quiet for the past week….obviously.  I’ve had to face some realities that frankly have bummed me out a bit and I haven’t been inspired to write.  I know that’s probably the opposite of what I should do, but I tend to be one of those people that needs to reflect on things a bit before expressing how I feel, even hiding it from my family and closest friends.  It might not be the best thing anxiety wise, but it’s what I do.

Last Monday, I met with my GI doctor to talk about my Ulcerative Colitis (UC).  You see UC is one of those diseases that just gets worse over time.  Logic would tell you that with the proper medications and diet, it would be kept in remission.  Sadly this is not the case.  My current cocktail of medications hasn’t been as effective lately and I knew it was time to have that talk with my doctor about switching things up.  Having had Pancreatitis back in 2007 from medication used for my UC (or so we think…there was never a definitive answer on that) I obviously have a healthy fear of these meds, so I had been putting this off for a while.  

The visit went well and I left with the fun tasks of getting a bagillion viles of  blood taken and scheduling a colonoscopy in the near future.  Oh joy!  Most people don’t get to have a colonoscopy until they are 50…this will be my 4th and I’m 33.  Oh and did I mention I tend to pass out when I get blood taken?  Yeah, that happens.  

So as I waited for the results of the blood tests to come back  the festering began…what would they show?  I of course was scouring the Internets to diagnose all of the other issues I’ve been having, dizzy spells, low energy, etc… which is probably the WORST thing you can do.  I was convinced I was B12 deficient, maybe anemic from the UC, or worse would the cancer markers appear showing what I have been dreading since this disease reared it’s ugly head 10 years ago.  Can you say hot mess and a ball of nerves?

Well guess what?  Everything came back normal…yep…normal.  All that worry, all that seclusion, what for?  Nothing.  And the worst part is stress and worry like that actually make my UC worse!  Way to go Sarah.  So what did we learn from this?  I need to tell my head to shut the fuck up and go on with my life.  Life is WAY to short to worry about the what ifs.  It is out of my control.  If I keep spending all my time on dwelling on that, I will miss out on all the positive and fun things life has to offer…like dancing with zombie monkey things…

Sarah-Monkey

Yep…that was me throwing caution to the wind this past weekend and immersing myself in the Halloween season at one of my favorite events, the Trail of Terror.  Poor health be damned, I’m going to get chased by chainsaws and crawl through tunnels!  OK maybe that’s a ridiculous example, but it really is a metaphor for me to stop trying to control everything in my life.  It just leads to stress and  more health issues…a vicious cycle.  

Will this be cured overnight?  NOPE.  But at least it’s something I can work on.  My colonoscopy will be coming up in the next few weeks (date still TBD) so until then I’m just not going to think about this crap and stop throwing pity parties!

 What do you worry about?  Do you throw pity parties for yourself?

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