Posts Tagged by uc

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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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…

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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.  

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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…

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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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Having Those Awkward Conversations

I try to avoid awkward moments at all costs.  I think most people do, right?  But somehow they seem to find me in all aspects of my life and somehow I’ve learned to suck it up and embrace the awkward.

So tonight wasn’t any different.  Here was the workout at CFM tonight:

Warmup: 400m run, mobility movements & 2 rounds of 5 wall squats, 5 wall angels, 5 ring rows & 30 sec jump rope

Skill: 50 meter sled push as fast as possible at 190# x 4, resting 2 minutes in between

WOD: 5 rounds of 20 jumping pull ups, 400 meter run & 60 second plank hold, resting 2 minutes between each

Blech…I knew right off the bat that was going to be a tough one, but I was determined to give it all I had.  Sled pushes are always a killer.  I got through the first round of the WOD fine, but on the second round I could feel some grumblings during the run.  My colon has been hating me for the past 2 weeks and when I’m in this state, running tends to make my UC flare up.  So instead of having to run to the bathroom in the middle of the WOD, I decided to switch to the air dyne.  Here’s where the awkwardness starts…

I told my coach (hey Colin if you are randomly reading this…but you’re probably not) that I wanted to switch and asked how long I should go.  To which he replied, “What, you don’t want to run?”  Sigh…I didn’t want to have to explain this in the middle of a workout while I was sweaty and out of shape.  So I reply with, “Well I could tell you why, but I don’t want to” and walked away.  Lovely….that’s not an awkward reply at all.

Well now I felt like I had to explain myself, plus the more I thought about it I figured I should tell him about my UC.  I’m actually surprised I never mentioned it to any of the coaches before for my own safety.  While I’ve gotten more comfortable talking about my UC to friends and people I’m comfortable with, I still find it difficult to talk to others about it, especially if I’m not sure if they know what UC is.  That’s really not something I want to have to explain in a gym full of people.  Yes, I know that’s crazy because I put it all out here on the internets.

So after class I quickly told him and he seemed unfazed by it.  I’m glad that I said something so now if I’m ever having an issue in the future I won’t have to have some other awkward interaction.  But who am I kidding…it’s just in my nature.

How do you handle awkward conversations?

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Living with Ulcerative Colitis

Over 10 years ago, I was diagnosed with Ulcerative Colitis (UC).  It was a scary diagnosis.  I had never heard of this disease and all I knew was that my digestive system was in serious distress.  It seemed like I was just given a life sentence of discomfort and exile.  How could I lead a “normal” life with a disease that had me constantly concerned with where the closest bathroom is?

If you’re not familiar with UC, it is a chronic inflammation of the lining of the large intestine/colon that causes small ulcers to form.  The ulcers produce mucus and often bleed, which causes a fair amount of discomfort during what we call a “flare.” Sounds lovely right?  

The most frustrating thing about UC is that there is no definitive cause.  Research has shown that it is possibly linked to genetics, environmental factors, auto-immune disorders, you name it.  But there is no concrete evidence to show one thing or the other or a combination of things.  Because of this, treatment options aren’t concrete either.  There is a lot of trial and error with various medications including steroids and immunosuppresants, all of which can have some pretty serious side effects.   

And because of all of these things, I often feel like this…

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Living with UC is no picnic.  When I’m in the middle of a flare, I often feel lethargic, depressed and achy.  Getting out of bed can be difficult, let alone working or exercising.  I’ve been on a variety of maintenance medications over the years, some of which have led to serious side effects.  

In 2007, I found myself hospitalized for 2 days because one of the medications caused acute pancreatitis, one of the most painful things I’ve ever experienced.  I currently am on a combination of a 5-ASA anti-inflammatory drug and steroids to keep my symptoms at bay, but some days that doesn’t even work.  

It hasn’t been fun and it hasn’t been easy, but unfortunately these are the cards I’ve been dealt so I’ve had to learn how to cope.  And thankfully, I still have many days that I feel like this…       

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I wanted to share my story of living with UC and hopefully encourage more people to talk about it.  For the first few years of my diagnosis, I very rarely talked about it.  Frankly, I was embarrassed!  Who wants to talk about their poop problems??  But at some point I just got over it.  I needed to talk about it.  I didn’t feel good and I didn’t want to make excuses for why.  I wanted people to know the truth and also to educate people who might not be aware of UC.  Over 700,000 people are suffering from UC, why is no one talking about it?!?

 The real turning point for me was when I started running and exercising more frequently.  UC plays a part in everything I do because I have to listen to how my body is feeling and not push myself too hard on bad days.  It also means knowing where bathrooms are at all time, which is why training for races can often prove difficult and discouraging.  I find myself having to map out routes where I will pass public places if needed.  I also have to carefully plan out my pre-run meals and leave enough time before going out for things to work through my system.  There have been way too many close calls!  It is because of this that I often struggle with motivation and putting in the miles…it’s easier to just avoid training, but that is never the answer.

In early 2012, I found Team Challenge, the endurance training and fundraising program for the Crohn’s and Colitis Foundation of America (CCFA).  Not only was this a great way to improve my running, but I was able to fund raise for an organization that is supporting research for UC!  The group was amazingly supportive and they helped provide tips for exercising with UC.  (Read all about my experience here.)  I also couldn’t believe how many people came out of the woodwork during the fundraising process to tell me that they either suffered from the disease or knew of someone who did.  It was empowering and opened up an amazing dialogue.  Again, why weren’t we talking about this before?!? 

One of my hopes with RAD Living is to create some sort of dialogue and also show people that a UC diagnosis isn’t the end of your life, it’s just a lifestyle change.  You can still do whatever you set your mind to, it just might be in a different way or with some restrictions.  I’m proof of that!  I’ve completed a marathon (albeit slowly), 5 half marathons, and I can pick up 220 pounds.  HELL YEAH!  I might never be the strongest or the fastest, but I’m still doing it and you can too.  

So plan on hearing about my ups, my downs, my bowel movements, my inflammation, and whatever else randomly comes to mind in the future about UC.  I want to be honest about this hateful disease and I hope that sometime in the future a cure will be found.  But until then, can you tell me where the closest bathroom is???

Do you have Crohn’s, Colitis or any other chronic illness that has made you make a lifestyle change?  I want to hear your story!   

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