Posts Tagged by crohn’s and colitis foundation of america
|May 22, 2014||Posted by Sarah under Running, Team Challenge, Ulcerative Colitis|
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…
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.
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.
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.
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.
In fact she even started running herself! She completed the Disney Family Fun Run 5k over Walt Disney World Marathon Weekend this past January.
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
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.
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.
- $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!!
|July 17, 2013||Posted by Sarah under Health & Wellness, 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…
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…
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!