Category Archives: CCFA

World Ostomy Day Twitter chat

I have loved seeing all of the ostomy love this week! It’s been great being a part of the sharing of information and spreading of awareness. And it’s not over yet!

This Friday, October 2, I have the awesome opportunity to co-host a Twitter chat with the CCFA as a precursor to World Ostomy Day. We are going to have a great panel of participants, including a colorectal surgeon, a dietician and representatives from the United Ostomy Association and the Crohn’s and Colitis Foundation.

World Ostomy Day Twitter Chat
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Why I take part in Take Steps for Crohn’s & Colitis

Prior to my ostomy surgery 2 years ago, I was not very involved in the IBD world. Sure, I would donate to the CCFA every now and then, or I might attend some informational event about Crohn’s disease, but I usually kept my distance. I don’t know exactly what it was when I found out I was going to have surgery, but I suddenly had this need to be a part of something. I had to find other people who had been going through the same thing. I volunteered about two days before the Take Steps Walk in 2012, which was just a week before my surgery. I was so sick that I was hardly any help, but I liked being out there with that crowd.

Around that time, I started The Stolen Colon and started being an active part of the Crohn’s disease and ulcerative colitis community. At the end of that year, I signed on to be a part of the planning committee for the Take Steps Walk the following year. So just last week I participated in my second walk as a member of that committee. And let me tell you… It’s a lot of work!

Take steps walk triangle ccfa crohn's colitis foundation stephanie hughes stolen colon crohn's disease ulcerative colitis inflammatory bowel disease ibd blog ostomy fundraiser cureThere is so much that goes into an event like this. The walk here in North Carolina brings in about 700 people each year, and we have to make sure to entertain, feed and keep safe all of these people. At the same time, we’re working hard to get sponsors and donors to raise funds to help find a cure for IBD. Because that’s really what it’s all about.

It has been a rewarding experience being a part of the walk. I have met some really amazing and inspiring people and have made some good friends out of it. Plus, it feels really good to know that I am working hard to help in the fight against IBD. I appreciate the platform I have here to speak about Crohn’s disease and to raise awareness, but it’s so important to raise that money, too. So really great research is coming out of the CCFA and I am excited to see where it goes from here.

This year’s walk was on a beautiful Saturday this year. I’m thankful for the nice weather. We had a big crowd out there and it is nice to see so many faces, from so many different backgrounds, working together towards a common goal. I tend to manage the ‘run of show’ for the event, Take Steps walk planning committee Michelle Marsh WRAL emcee speaker ccfa crohn's colitis foundation stephanie hughes stolen colon crohn's disease ulcerative colitis inflammatory bowel disease ibd blog ostomy fundraiser eventmaking sure all of our speakers have what they need and are where they are supposed to be. Basically it means that I am running around like a crazy person all day long. I wish I had been tracking my mileage, because I bet I got in some distance that day just running from point to point. (And you can ask anyone, I was definitely running everywhere.)

There were weeks and months of planning put into the walk and, all in all, it turned out to be a great event. There were a few hiccups along the way, I don’t think anyone expects these sorts of things to go off without any hitch, but thankfully none of them were major or ruined the integrity of the day. In the end, we raised over $100,000 to help find a cure for Crohn’s disease and ulcerative colitis!

I hope to be able to continue to be a part of this group. It has been a great experience, even when the amount of work that needs to go into it keeps piling up, it’s always worth it in the end to see the faces of the people and kids living with IBD and seeing the money being raised and know that you helped make that happen. That’s a good feeling.

Arrivederci, inverno

I will never understand how the months continue to fly by so quickly that you hardly even notice them coming or going. It seems that every time I turn around I’m looking at another month and another set of things that need to be done in the following four weeks.

april spring flowers warm hot weather season stephanie hughes stolen colon crohn's disease ulcerative colitis inflammatory bowel disease ibd blog ostomy

On the bright side, however, Spring has finally decided to make its way to North Carolina. And it’s really coming on strong. I believe we got up to 86-degrees today. And while I usually do like a bit of more transition in between my seasons, I am not complaining about the heat because all I care about is the fact that the cold is gone! And I’m just hoping it’ll stay that way.

March was a little sad for me on here. I hate that I didn’t get the opportunity to write more on The Stolen Colon, but things have really picked up around here. But thankfully (and hopefully!) April is my last month, at least for the foreseeable future, where I have more things to do than I have time to do it in. So as long as I can make it through the next 30 or so days, I’ll be in the clear.

I have a few major events going on this month. I actually am heading out-of-town next week for a work trip in Florida and I will be gone for four days. Two days after I return is my third half-marathon race. And just two weeks after that is the Take Steps Walk for the Crohn’s and Colitis Foundation and I am on the planning committee. And during all of this, I am having to conduct my research for my grad school project and getting the information ready to present as a final report. Needless to say, I am a little worried about being able to get it all done.

Usually in times like this, I just take a deep breath and take it a day at a time. But the fact that so many of the things going on this month need a lot of leg work and planning done beforehand, that practice doesn’t seem to be working well for me. I am having to think about three steps ahead and try to get as much done in each day as I possibly can.

There is good news, however. Well, first of all, let me say that none of this is bad news. These are all things that I really love and enjoy and I am so glad to be participating in all of them… I just wish they didn’t happen to be going on all at the same time. But I do have big plans for unwinding afterwards. My husband and I are planning our first trip to Europe!

As soon as we get to May, I have my final paper due that first week and then three days later we will be boarding a plane for Italy. I am so excited! We haven’t taken a big trip since our honeymoon and, like I said, this will be both of our first trips to Europe. And I am so looking forward to not worrying about anything that I need to be doing and just enjoying the history and the food… and the wine!

It’s going to be amazing. Although, I haven’t had much of a chance to really think about it because there are so many other things that need to be thought about right now. But in the back of my mind, I know that all I need to do is push my way through the next five weeks and prepare for an incredible trip.

  • The Stolen Colon
    • Plan things ahead of time so I don’t run out of time and not put up any new content.
  • Grad School
    • Finish research and interviews for my project.
    • Work in small amounts whenever I can so I’m not overwhelmed with too much all at one time.
  • Work
    • Enjoy my first work trip to Florida!
    • But don’t let the trip put me behind on everything else I need to do.
  • Training
    • Finish out the final two weeks of my training strong.
    • Run a great half-marathon! (And hopefully PR!!)
  • Personal
    • Work hard on the CCFA Walk for the next three weeks so we can put on an amazing fundraiser for Crohn’s disease & ulcerative colitis research.
    • Finish up planning for trip to Italy.
    • Find some time to breathe.

Classin’ it up for Crohn’s and ulcerative colitis

I mentioned before that I attended the Crohn’s and Colitis Foundation’s gala last week. I’ve been meaning to write about what a great experience it was, but I’m actually getting ready for a trip to Florida tomorrow, so I’ve had a lot of stuff packed into a short week and haven’t had the chance. So I’m catching up now!

Jarrod and Stephanie Hughes crohn's colitis foundation ccfa gourmet gala stolen colon ostomy blogFirst of all, I love events where I get to dress up a little more than normal (and when I can convince Jarrod to get dressed up, too!) Secondly, I love any way that I can support the Crohn’s and ulcerative colitis community, so this was the perfect opportunity!

I worked previously with our local CCFA representative on the Take Steps Walk earlier this year, so we’ve kept in touch. Last minute, her group of volunteers had to pull out because their daughter ended up having to go to the hospital due to a flare up, so she asked if I could help with some of the set up. We met up first thing that morning to transport everything over to the venue and get everything ready for the silent auction. That’s a much bigger task than it sounds!

We had to get nearly 100 different auction items set up all around the room, trying to spread items out and make it look nice, too. Then we had to number all of the items and make lists for it all. It took a long time, but we finally got it to where everything looked really lovely and well organized. I ended up staying until about 2:00, but had to leave then to have enough time to get ready and head back for the start of the event at 5:30.

We attended the Gourmet Gala with my sister and her husband and we shared a table with a friend of mine from the Take Steps Walk and her family. Since I was there to help set up, I was able to snag us a good table near the food!
gourmet gala ccfa crohn's colitis foundation event silent auction dinner stephanie hughes stolen colon ostomy blogThe event itself was beautiful. It was a lot of fun getting to see some old friends that I didn’t necessarily expect to see. But unfortunately, I got out-bid on all of my auction items.

The food was delicious! There were 15 different restaurants that were set up with appetizers and small dishes and desserts. I definitely ate too much, but how can you not when presented with so many amazing options?

On top of the silent auction, they always hold a live auction after dinner. The spokesperson for the night was John Forslund, who is the TV announcer for the Carolina Hurricanes. He introduced the Youth Ambassador for the evening, 11-year-old Gavin, who talked about what it’s like being a kid living with Crohn’s. (You can actually hear some of his speech on Youtube.) It reminded me of what it was like for me being about his age when I was first diagnosed. I don’t think I would have been brave enough to talk about it in front of 220 people though!

All in all, it was a great event and I’m glad that I was able to both help out and get to enjoy the evening with my family and friends. The event raised over $42,000 to go towards research on Crohn’s disease and ulcerative colitis and towards programs to help those of us living with these diseases! I’m also proud to be a part of a community that cares enough to pull off an event like this. I encourage you to attend or volunteer at a CCFA event in your area. It has been a very rewarding experience for me.