Spreading the Hope of Youth Rally!

Remember your teenage years? Wanting the right hair and clothes, having a crush on that special someone – who didn’t know you existed? Recall feeling awkward and out of place…all alone? Remember trying to fit in? Now imagine that you had a chronic illness that required surgery to save your life. What if on top of all the “normal” adolescent issues, you used the bathroom through a pouch on your side, because your diseased intes­tine had to be removed. How’d you like to miss your birthday party, the big game, even prom, because you were in the hospital- AGAIN! Sounds like a bad dream, doesn’t it?

For thousands of teens across the nation, THIS IS REALITY.

A reality that I was all too familiar with. Diagnosed with Crohn’s disease at age 9, I spent much of my childhood in the hospital. When I was 15, I had my diseased large intestine removed, leaving me with a condition called an ileostomy. The ileostomy is a surgically created opening in the abdomen through which doctors bring a portion of the small intestine. I now wear a prosthetic (called a pouch) on my abdomen that my waste is collected in. There are other types of ostomies,too, depending upon the type of bowel or bladder diversion the person is in need of.

When I was 17, I attended my first Youth Rally. It was there that I met young people from all over the country who shared my very same experiences. For the first time, I didn’t feel alone, and the support and camaraderie I received through Youth Rally shaped my life’s work.

I’ve gone on to be a Rally counselor over 12 times, helped to start a support network for young adults with ostomies and diversions, and have  led the ostomy community in the U.S as the president of United Ostomy Associations of America. I now work for an amazing company that makes undergarments for people that have had ostomy surgery, helping them regain their confidence and active lifestyle.

My passion is to let others know that no matter the trauma a person has been through, there is always a purpose for the suffering, and a light at the end of the darkness. I want others to recognize that they too can rise from the ashes of disease and live life to it’s fullest, something I have been doing since 1993 when I first attended Youth Rally as a camper. Rally taught me that I was not alone, and that is what made all the difference.

By returning to Youth Rally as a counselor, I have the opportunity to use my experiences (with Crohn’s Disease and 14 subsequent surgeries and as a leader in the ostomy community) to bring a message of hope to other young ostomates who may not see the light at the end of the tunnel.

Would you consider making a donation to help me share the hope of Youth Rally with teens from across the country?

Thank you in advance for your support!

*** To make a donation, you can click on the Sponsor Me link on the right side of this page, or navigate to my Youth Rally Fundraising page ***

For more information about Youth Rally, see their website located here

Me & former camper turned CIT counselor Kristen K. Two KK's = twice the shenanigans!

Takin’ Steps Toward A Cure

Did you know that approximately 1.4 million people in the United States have Crohn’s disease or Ulcerative colitis?
These illnesses, collectively known as Inflammatory Bowel Disease, cause chronic inflammation of the digestive tract. Currently, there is no cure.  

Did you know that approximately 700,000 people in the United States live with an ostomy?
An ostomy is a surgically created opening in the abdomen where a portion of the digestive or urinary tract is brought through to create a stoma. An appliance, or pouch, is then worn over that opening to catch the waste that is eliminated.  

I am one of the 1.4 million and 700,000.  
I was diagnosed with Crohn’s disease at the age of 9. I spent 3 consecutive months in the hospital, only to be discharged to live a life that was no longer my own. My normal childhood gave way to a life controlled by bloody diarrhea, 30 bathroom visits a day, strict diets, and medications galore. It seemed my future would now be dictated by a debilitating disease. At age 15, after a particularly long flare up of the disease, I chose to have my entire colon removed, in hopes of bringing the disease into remission. Fourteen surgeries later, I now live with a permanent ileostomy, and finally…I am healthy!  

I spent many years feeling alone and isolated. Questions danced through my mind…
“Why me?”
“Will I ever be healthy?”
“Will life ever REALLY be worth living?”
“Why did this happen?”
“Can anything good ever come from my suffering?”  

In 2006, I joined the staff of the Crohn’s and Colitis Foundation of America, the only national organization dedicated to curing and preventing Crohn’s disease and ulcerative colitis through research, and to improving the quality of life of children and adults affected by these digestive diseases through education and support. I work in the Northeast Ohio office, and every day I receive calls from patients, young and old, asking the questions I, too, asked myself many years ago.  
My journey with Crohn’s disease and an ostomy has opened up to me a world of opportunity, both personally and professionally. Everyday I get to share my experiences, in hopes of making someone else’s journey a little bit easier. My passion is to let others know that there is indeed life after Crohn’s disease and ostomy surgery. And it’s good life!
By using my story to help others and answer their questions, my own questions of years ago have been answered.   I hope that by sharing my story, you will be compelled to help me help others by supporting me as I walk in the Take Steps for Crohn’s and Colitis Walk.
You can get involved in two ways – join my team and walk with me on June 6, 2009 at Progressive Field in Cleveland, or make a tax deductible donation to CCFA Take Steps in my name.

The walk is going to be a lot of fun – a family festival atmosphere with a DJ, food, inflatables and storytelling for the kids, company exhibits and presentations. The festivities start at 5:30pm and the 2.5 mile walk kicks off at 7pm. If you’re interested in walking with me and my friends and family on the  Me & My (Osto)Mates team, go to this link:

http://online.ccfa.org/site/TR/Walk/Chapter-NortheastOhio?px=1233871&pg=personal&fr_id=1213

If you’re unable to walk with me, please consider going to my page and making a tax-deductible donation. Over 80 cents of every dollar donated to CCFA goes directly to mission based programs and research that benefit me and patients just like me!

Thanks for your support. I hope you’ll join me on June 6 to Take Steps toward research, support, and a future free of Crohn’s and colitis!

Crohn’s and colitis give me my live TV debut

Yep, that’s right…I was on TV this morning. You can view the clip Here

It was a great interview, a wonderful way to get the word out about Take Steps  and raise awareness about Crohn’s and colitis.

However… hello?!? Is that really my face?? Please tell me those aren’t my chipmunk cheeks…

*sigh*  At least it was for a good cause ;^)

Golfin’ for a good cause

Today was CCFA’s 20th annual golf outing, which meant I got to hang out at the Chagrin Valley Country Club all day. It was an absolutely gorgeous day. I spent most of the afternoon hanging out at Hole 7 waiting for someone to hit a hole-in-one to win a JEEP (and working on my tan ).

I also got to meet Tony Rizzo from ESPN Radio 850 WKNR. Now, I am not a sports buff by any means (however, after the Brown’s performance yesterday, I may have to jump on the bandwagon) but it was still cool to meet him. I’ve watched Tony on Fox 8 News for years. And he stuck around and golfed, which up’d his coolness quotient in my book.

I think all and all we raised a little over $100,000 for IBD research and support. And I got to spend the day here

I guess work ain’t all bad…

Support Me as I Get My Guts in Gear

Get Your Guts in Gear is a non-profit, 501c3 charity that raises funds and awareness for organizations that support people with Crohn’s disease, ulcerative colitis, and ostomies. Their website is www.ibdride.org. June 8-10, 2007, I will be crewing the Get Your Guts in Gear bike ride in New York State.

Many of you know of my challenges over the years living with Crohn’s disease and a permanent ostomy. Please view my ride website to see why I’ve decided to crew this ride, and please consider supporting me financially. My goal is to raise $3000 to support the amazing organizations that benefit from this ride.

Thanks in advance for your support!

My ride website: www.ibdride.org/kknipp

So Cool

I love days like yesterday, when I am completely reminded why I have such a passion for my job. I want you to meet Joey. Yesterday was Joey’s 14th birthday. Instead of holding a big party,getting gifts, and having the day be all about himself, Joey chose to hold a fundraiser for CCFA (Crohn’s and Colitis Foundation of America). See, Joey was diagnosed with Crohn’s disease two years ago. He approached our CCFA chapter last year about holding a fundraiser in conjunction with his birthday party. Last year’s “Joey’s Crohn’s Fighting Fundraiser and Birthday Bowling Bash” raised a bit over $4000 for CCFA. Boy, were we impressed with the efforts of a 13 year old! This year’s event was an even bigger success! Joey invited the whole middle school, and almost the entire 8th grade showed up. For a $5 donation, the kids got to come, bowl for 2 hours, eat donated pizza and pop, and have their name entered into a raffle for some great prizes Joey and his family had solicited. For additional donations, the kids were entered into another raffle for some really cool “big ticket” items, like a video iPod, an electric guitar and amp, a Nintendo Wii, and Cavs tickets so close to the court “LeBron will sweat on you”, as one eighth grader put it .
All this stuff was donated by the community or CCFA board members! And…are you ready for this? This year Joey raised over $9300, and the total is still climbing! As a fundraiser by “trade”, I’m very impressed by that total…but the money is not what moves me…or motivates me to continue what I do. No, it was watching Joey, all smiles, as all his buddy’s came through the doors of the bowling alley to support him. It was watching Joey’s little sister Sarah and her friends yell ” We love you, Joey”, then burst into a fit of laughter, as Joey’s was trying to raffle off prizes. It’s seeing the tears of joy and pride in the eyes of a mom who wants more than anything for her son just to be “normal”, and the pats on the back by a father to a son. It was watching Joey talk to a reporter about his struggles with Crohn’s, and I thinking that one day, this kid is going to Capitol Hill to tell his story. Joey’s gonna change the world…he already has. He’s not being a victim, he’s putting a face on a pair of diseases that no one wants to talk about. He’s educating his friends and the community. And in the process, he’s taking control of his destiny and empowering himself. He’s learning that there is, in fact, life after Crohn’s disease… and that’s what my job is all about.
Here are some pics from the event:

The whole gang

Joey and his mom

Birthday cake

Sister Sarah “has guts”

Go Bay Village!

I got to present Joey with a $1000 check from one of our major donors!

Colondar

…not to be confused with colander! LOL

This is amazing and you need to check it out! It’s a project of The Colon Club, and it’s near to my heart because of the risk of colon cancer associated with having Crohn’s disease and Ulcerative Colitis.

All the models in the calendar are colon cancer survivors who were diagnosed with the disease before age 50. Colon cancer isn’t just for old folks, people!! A few of these models even have ostomies…and my friend Bob just happens to be Mr. December!

Now…go buy one and support this worthy cause!