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SOME DAYS YOU’RE THE DOG, SOME DAYS YOU’RE THE HYDRANT!

One Tough Pup’s Battle with IBS

Digestive disorders have become somewhat of the norm in the Dodson household, since my husband Jason was diagnosed with Crohn’s Disease in 2009. Since Crohn’s Disease runs in Jason’s family, we’ve known there would always be a chance that any children we have might also have Crohn’s. We were so surprised, however, when we learned that the first addition to our family, Bentley (our 8 month old Labradoodle) seems to have inherited Jason’s problematic belly!

We adopted Bentley at the end of September 2010, when he was just 3 months old. He was skinny and skittish, and as sweet as the day is long! In the 5 months that we’ve had Bentley, he has more than doubled in size, sometimes seeming more like a horse than a dog. As steady as Bentley’s growth has been, his puppy-hood has been filled with the battles familiar to all of us dealing with Crohn’s, Colitis, or IBS as a patient or loved one. Bentley’s initial symptoms suggested a food allergy. Yet, after months of only eating hypoallergenic food (arguably more bland than rice cakes) and still having problems, our vet gave us the surprising news that he believed Bentley was suffering from IBS. Who knew?!?! We’ve been pleasantly surprised to learn that pet companies are responding to the needs of dogs with digestive orders by offering everything from probiotics to specially digestive foods and treats.

So, what have we have learned from Bentley and his on-going bout with digestive disease? First and foremost, attitude is everything! Bentley has taken his belly ups and downs in complete stride, and with the same enthusiasm that causes us to love our dogs so much to begin with. He accepts his changes in diet eagerly, excited about even the blandest dog food as though it were a royal feast. He thinks of probiotic powder as a yummy seasoning salt, and takes acid indigestion pills like they’re treats. He never lets an achy belly keep from a nice long walk or a wild, crazy run through the dog park. He loves to meet new people, and takes a rub on his belly as an offer of lifelong friendship. He’s never too sick to steal a shoe, chew up an important document, demolish a chew toy, or catch a ball. Bentley has become our excited little champion of IBS, and we’re so excited to have him walk with us this year in our continuing fight against digestive diseases!

Rachelle Dodson

Get Your School Involved!

Get a school fundraiser scheduled now for the spring before the calendar fills up. Ask to speak to the PTA/PTO to get them involved. Suggest doing a Take Steps for Crohn’s and Colitis week where the kids do a different fundraiser each day and share information about Crohn’s Disease and colitis with students and faculty.

Me, Myself and Crohn's, a volunteer & patient's story on how she became involved.

In March of 2007, I was diagnosed with Crohn’s Disease after my father took me to the emergency room due to the intense abdominal pain and the lack of bowel movements in the previous weeks. It was going to happen eventually I suppose, since my younger brother was diagnosed with it in 2004. For the past 4 years, my Crohn’s Disease has made it a hobby to stick me in the hospital for several days with a flare or increase my depression at just the “right” times. Oh that Crohn’s Disease is tricky!

Since being diagnosed, I’ve been on a wide array of medications. The one that has remained a constant is Azathioprine (Imuran). Currently my dose sits at 225mg a day. I also take Welchol to help with the number of daily trips to the bathroom. I can definitely tell a difference since I’ve been on that, as it has decreased those trips probably by half.

The last time I was admitted to the hospital due to my Crohn’s Disease was December 23rd, 2009. I spent the entire Christmas holiday in the hospital and did not get released until very late Christmas Day (afternoon). It was then and there I became fed up with ending up in the hospital at least once a year due to my disease. I had enough and thought it was time to look at other options.

But before I looked into those other options, on January 3rd, 2010 I made the ultimate commitment to Crohn’s and Colitis awareness. Instead of the better known purple awareness ribbon, I had my tattoo artist create a purple ribbon that looks like intestines (colon). Below it is a semicolon, and that was done because of my best friend. She made the joke that people about people with IBDs having part of their colon removed wondering if it became a semicolon. : ; - get it? The "Because it matters" is because finding better treatments or a cure should matter to everyone, not just patients, but family members as well.

I made a call to University Surgical Associates at the end of January to make an appointment with Dr. Susan Galandiuk, as she was highly recommended. The first appointment was towards the end of April. When my appointment time finally got here, I was both anxious and nervous especially with the thought of a possible major surgery looming in my future. We talked about the surgery, the process, the possible complications, and she answered any questions I had. When I asked her if surgery would benefit me, she said yes I decided to go ahead and schedule it. My surgery was scheduled for June 7th, 2010, which fell two days after the first Take Steps walk in Louisville. It was either irony or fate that my surgery was scheduled for that date.

The day of my surgery quickly snuck up on me. Surgery was done with no major complications. Dr. Galandiuk removed 9 and a half inches of my small intestine out (and re-sectioned) along with removing what she said was “the biggest fistula” she had ever seen. I spent a week in the hospital and then I was finally able to go home and finish my recovery. It was an additional 3 weeks before I allowed back at work.

Since then I have become very involved with volunteering for the Kentucky Chapter for CCFA. Most recently I’ve been helping Jenny Silberisen with getting the word out about CCFA and IBDs by assisting in getting blog postings up and doing Facebook updates as needed. I have also assisted at the educational programs that were put on in 2010 in both Louisville and Lexington along with the Love Your Guts fundraiser. Anything that Jenny needs and I can do, all she has to do is ask (or me offer)! It’s like I became one of Jenny’s right hand man (or in my case woman), and volunteering has made me feel like I’m needed and gives me a purpose. It’s very important to get the word out about IBDs, and volunteering allows me to do that and so much more.

Because of volunteering and fundraising, I have had the chance to meet people I would have not normally would have met. After posting on an unofficial bulletin board at work, I met a gentleman that works in the same building as I do whose young son was diagnosed with Crohn’s Disease. I told him about CCFA and how they were trying to get a Kentucky chapter started and how volunteering would be a beneficial thing for the both of them to do. Just a few weeks ago, I posted again on the unofficial bulletin board trying to fundraise for this year’s Take Steps walk. I received an email from a lady who worked in the building next to mine who was recently diagnosed with Crohn’s Disease and she had so many questions about it and my experience. I told her my story and made sure she knew that I was there for her if she needed someone to talk to. Without my volunteering opportunities and fundraising efforts, I would not have met these people who are dealing with Crohn’s disease and give them some kind of support they may not have had otherwise.

So that is my story. I hope you will share it with others who may be dealing with issues related to IBDs.

Dressing Down for Digestive Diseases

Are you looking for an easy way to get your office involved in your cause? Why not host a "Dressing Down for Digestive Diseases"

Contact Jenny Silberisen (646) 623-2620 or kentucky@ccfa.org for the Dressing Down for Digestive Diseases Packet. The packet comes ready with everything you need to make your event a success.

The Packet Includes,

- Recruitment Flyers to help promote your event

- Sample Emails

- Foot Prints to hang around the office as people donate

- Paycheck Stuffers

- Printer ready Stickers to print and wear on the day of the event

Team Triple C is on a roll......

I became involved with CCFA (The Crohn’s and Colitis Foundation of America) because I have Crohn's and know firsthand the suffering I have been through with this disease. I wanted to make a difference and that is precisely why I am fundraising.

I started my team The Triple C’s which stands for Crushing Crohn’s and Colitis. I reached my initial goal of $250 simply by sending out emails to friends and families. (Some I had to send a few reminders, too, but that's ok). I have used many of the templates provided on the Take Steps (www.cctakesteps.org) website, but have tweaked them to give a personal touch for my friends and family. I always include their name on the letter and make sure to add a personal note to them, like "Be sure to say hi to George for me" or something like that. I want them know I truly appreciate all their support to help me reach my goal and to build awareness. I don’t want them thinking all I care about is their money, I want them to feel special. And WHO doesn't like to feel special!?! We all do! I always follow up with a personal email after I receive a donation from someone and let them know they will be getting a Thank You letter (receipt) in mail soon. I also include a personal note at the bottom of their receipt. I mail it to them ASAP. Follow up is extremely important.

I increased my personal goal in the last week. My team is placing jars on their desk for coin donations at work and around at local businesses. They are a great group! I send them an email every week thanking them for doing such a great job! Also I include different ideas for fundraising that they might not have thought of yet – these ideas are on the website, too. I don't send them all at once, because I don't want to overwhelm them. I just appreciate what they are doing and that they have agreed to be part of my team.

CCFA is a wonderful organization. I am proud to be part of it and am excited about the Walk this May!

Krispy Kreme Fundraiser! Great Team Wrap Around Event

Are you in need of a fundraising idea for your team and you LOVE Krispy Kreme Donuts?

Kripsy Kreme has four different ways you can rasie money. Click the link below and read more about them.

CLICK HERE

Publisher's Printing in Shepherdsville KY has partnered with CCFA

Louisville, KY  – January 26, 2011 – Publisher’s Printing in Shepherdsville, KY has partnered with CCFA in Kentucky as one of the sponsors for the Louisville Take Steps Walk on Saturday May 21, 2011 at 5pm at Waterfront Park’s Harbor Lawn. Like hundreds of thousands of other Americans around the country participating in over 100 Take Steps Walks, Publisher’s Printing is helping to raise much-needed awareness of and funds for Crohn’s disease and ulcerative colitis, chronic and painful digestive diseases impacting over 1.4 million American adults and children including over 19,000 in Kentucky.

MEET LOUISVILLE'S 2011 HONORED HERO

Ashley Bittenbender may be a shy and somewhat reserved teenager on the outside, but on the inside she is tough and a fighter. She has to be because she battles a debilitating disease known as Ulcerative Colitis.
After a year suffering from chronic symptoms, Ashley was diagnosed in August of 2010. “It can be hard,” said thirteen-year-old Ashley, “because the joint pain and the chronic fatigue get in my way. But in a way it also makes me stronger.” That is especially true when she’s doing the one thing she enjoys most – being the goal-keeper for a competitive girls traveling soccer team in Indiana.

“Ashley is very athletic,” said her mom Dr. Casey Bittenbender, “but when she got sick she was sidelined from the game and that was very hard on her. However, while she struggles daily with these issues she also accepts them and adjusts her life accordingly. She’s a trooper and uses her faith in God to get her through.”
Although Ashley considers herself your “average” girl, she excels in school and loves science and history. When she’s not studying or playing soccer, you can guarantee she’s listening to music. She is also an avid lover of animals, especially horses, and one day wants to be a veterinarian.

“Having UC is a serious pain. Fortunately I have been very blessed and have only had a few flares, others aren't so lucky. Lots of kids who have the same disease spend a lot of time in the hospital because their disease is really severe and their medication can't keep it under control. We desperately need a cure.”

How much Spirit have your got? Show it and be entered to win $20 towards your team!!!

How much Spirit have you got? Can you help raise Take Steps to the next level this year? Join us in our National Take Steps Spirit Week as we challenge every registered walker to raise a minimum of $30 on their personal fundraising page by January 16. And if you show us your spirit, we will show you ours by entering you in to win $20 towards your team.

If every registered walker raises $30 or donates $30 to themselves, we would have raised over $70,000 in just ONE WEEK to go to research efforts and support programs.

Check out our new Facebook page!

We are changing facebook pages for the 2011 Walk Season. Please "like" us at Take Steps Louisville (non-profit)

What are you Thankful for?

As we are approaching the Holiday season, we are asking everyone to share what they are thankful for.

We will start by saying that CCFA Kentucky is thankful for such a successful year and starting to build community presents with support from all our patients and volunteers.

Please click the city below and share with us on our facebook page

Lexington

Louisville

CCFA Testifies at Hearing- Thursday November 18, 2010

CCFA Testifies at Hearing:

Tomorrow morning Ally Bain, a CCFA advocate and National Youth Leadership Council member will be testifying in front of the Department of Justice (DOJ) on behalf of the Foundation. CCFA recently submitted comments to the (DOJ) requesting that IBD patients be allowed access to “employee only” restrooms under the Americans with Disabilities Act (ADA).

In addition to this hearing in Chicago, there will be two other hearings in DC and San Francisco.

To view the Press Release, Click Here.

Now Accepting Applications for The Leadership Board (Board of Directors)

We are currently accepting applications for the Leadership Board for Kentucky as we develop a Chapter for CCFA.

For more information about the positions avaialble and an application

Please contact Jenny Silberisen

(646) 623-2620

jsilberisen@ccfa.org



Nominate Lexington's and Louisville's next 2011 Honored Hero

Nominate the 2011 Honored Hero



Nominate the next 2011 Honored Hero for our Lexington and Louisville 2011 Take Steps. The Honored Hero puts a face on digestive diseases for the 2011 year. The Honored Hero works with the Crohn's and Colitis staff to reach out to the community via media outlets and events. The Honored Hero will attend the Kick Off Party and Walk Day and will speak on behalf of CCFA as the Honored Hero on Walk Day. They will also have their picture and a brief bio placed on the website and used as a marketing tool possibly placed in print media. The Honored Hero will be required to have a Walk Team.

Please type in a Word Document 300 words or less why you think your nominee should be our next Honored Hero. Please use the font Times New Roman in size 12 font and attach a photo of your nominee. Please indicate what city you are nominating for.

All nominations must be received via email (jsilberisen@ccfa.org) or mail (P.O. Box 573 Prospect, KY 40059) by November 30, 2010

Requirements for Nominee's: Individual must be affected with a digestive disease and must be between the age of 13- 18

Louisville Join Jenny Monday November 1st

Join Jenny on Monday November 1st

at the Bon Air Library

6:30PM- 7:30PM

Learn about getting involved in Take Steps 2011

Learn your committee & who you'll be working with if you already joined

Learn about starting and managing a Team

Learn about different ways to fundraise

LOOK FORWARD TO SEEING EVERYONE!

For more information contact Jenny Silberisen Community Development Manager (646) 623-2620

jsilberisen@ccfa.org

Bon Air Library is located at 2816 Del Rio Pl Louisville 40220

Don't miss this fun and exciting event in Louisville!

COMING TO LEXINGTON!!!!!

Wednesday November 10, 2010

Embassy Suites Lexington Hotel

Guest Speaker: Dr. Willem de Villiers, University of Kentucky

5:30pm, Check - in

6:00pm-8:00pm, Program

 Embassy Suite Lexington Hotel is located at 1801 Newtown Pike Lexington, KY 40511

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Registration is required

Register Online

Call (646) 623-2620

Email Jenny Silberisen at  jsilberisen@ccfa.org 
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Sponsored by

Centocor and Shire

Register Now! Understanding IBD in Louisville

 

Tuesday, September 28, 2010

Jewish Community Center of Louisville

Guest Speaker: Dr. Gerald Dryden, University of Louisville

5:15pm, Check - in

6:00pm-8:00pm, Program

 Jewish Community Center of Louisville is located at 3600 Dutchmans Lane Louisville KY 40205

 -----------------------------

Registration is required

Register Online

Call (646) 623-2620

Email Jenny Silberisen at  jsilberisen@ccfa.org 
 -----------------------------

Sponsored by 

Lexington Mark Your Calendar's....Join Us for Dining to Donate!

YOU MUST PRESENT THIS FLYER WITH YOUR RECEIPT IN ORDER FOR US TO GET CREDIT!

Please Print this Flyer. If you are having trouble, contact Jenny Silberisen 646-623-2620 or jsilberisen@ccfa.org