Category Archives: CCFA

Who do you support on World IBD Day?

World IBD Day inflammatory bowel disease may 19 crohn colitis ostomy stephanie hughes stolen colon blogI recognize World IBD Day on May 19th because more than 5 million people worldwide are living with an inflammatory bowel disease, myself included. Around 1.4 million of those people live here in the US. Considering these numbers, I am always surprised at the lack of knowledge out there.

If find that most anytime I tell someone that I have Crohn’s disease, they more often than not answer with something like, “Oh, my ______ has that” (fill in the blank with cousin, friend, aunt, etc.), but they often don’t know much more than that. Chances are, you know someone who is affected with one of these diseases. I may be that person for a number of you out there.

IBD is one of the five most prevalent gastrointestinal disease burdens in the United States, with an overall health care cost of more than $1.7 billion. This chronic condition is without a medical cure and commonly requires a lifetime of care. Each year in the United States, IBD accounts for more than 700,000 physician visits, 100,000 hospitalizations, and disability in 119,000 patients. Over the long term, up to 75% of patients with Crohn’s disease and 25% of those with ulcerative colitis will require surgery. (from the CDC)

I am saddened to think of the many people out there who suffer in silence, with no one they can turn to who can understand. That was me for many years. I tried to live as normally as possible, but that’s a lot to shoulder all by your self. I feel very blessed to have such a great family of IBDers out there who I can turn to for advice, sympathy and always some good butt jokes.

Simply today, I want to remind you of those who deal with these diseases daily. Remember your grandmother, your uncle, your friend who have to live with the symptoms such as pain, diarrhea, fatigue, cramping and blood loss. Educate yourself and be a part of the push for a cure. These people need your support. Let them know that you are standing behind them. The Crohn’s and Colitis Foundation is a great resource to learn about the diseases and how you can get involved to help find a cure.

Who do you support on World IBD Day?

 

Hard run and hard news

Stolen colon crohns ostomy blog ccfa team challenge half marathon colitis team challengeI know it’s not Tuesday (even though I’m sure many of you may be reading this on Tuesday), but I think it’s time for a Team Challenge update. It’s actually been a really big week.

So a quick update on training… I got up with the team coach this week to talk about my training. She gave me some good tips for getting a little caught up without overdoing it. I made a big jump up to 9 miles this week. And it was a BIG jump. I went out first thing Sunday to run through Umstead Park and it was just not happening for me. It took me about a half-an-hour to find any sort of rhythm and keep up a decent pace. By the time I got back on track, I was already struggling just to get through it.

I ended up getting in 8.87 miles in 2 hours, and that was really just because I was doing an out-and-back run and misjudged the distance and didn’t have the energy to finish off the rest of the .13 of a mile. Granted, running through the woods is going to slow you down a bit, but I have been able to keep up a much better pace recently, so it was disappointing to have such a difficult run. The last 2 miles, my legs felt like blocks of concrete and I had moments of feeling that I wouldn’t make it back to my car. It felt the same way as the last 2 miles in Vegas, except I had no motivation to pull out a sprint near the end. But I’m glad I’m passed it and now it’s time to move on to the final 2 weeks of long runs and get myself prepared for the big day, which is now just over 3 weeks away.

On top of a hard run, we received some difficult news here in North Carolina this week. We found out that this will be the last season for Team Challenge in the Carolinas. Basically this means that we no longer have a full-time staff person and will not have a local group to train with before the race. If one of us wants to be a part of Team Challenge again, you become part of the National team, so you’ll still have the accountability that comes along with the program, but you won’t be surrounded by the people like we are now.

Even though I haven’t had quite the community that others have had, it was really hard to learn this last week. The program has meant a lot to me over the past 7 months and I’ve enjoyed being a part of it, even from a bit of a distance. It’s not easy to understand why things like this have to happen, but I also realize that all of this is about promoting research for a cure and resources for patients, so if a program is not being able to do that, then it’s time to rethink things. I just hate that it came down to this.

I’m not sure what this means for me in the future. I had already decided to take the fall season off because I have discovered this time that doing back-to-back seasons is a very big commitment and more than I was prepared to handle coming into this. And I don’t know if they’ll restructure and bring it back in the future, but I’m not counting on that for the time being. I guess we’ll see what the future seasons bring.

 

A lot of ground to cover in one month

Stolen colon crohns ostomy blog ccfa team challenge half marathon colitis team challenge tuesdayIn just a few hours, it will be May 1st, which means we are exactly one month away from my half-marathon on Virginia. It is hard to believe it is coming up so quickly. I feel like there is so much to be done. So I have been trying to get caught up on some rest, but I have to jump back in tomorrow.

Training has been good. I made it through 7 miles on Sunday with a steady run/walk pace, averaging under 12-minute-miles. But I am still pretty far behind. The Team Challenge group is preparing to run 10 miles this weekend and I think trying to hit that goal is going to be pushing it just a little. I am staying in contact with our team coach on what she thinks might be an appropriate training schedule for me in these coming weeks. I’ve got a lot of ground to make up, but I’m feeling positive about it.

I am also a little behind on fundraising, but picking up the pace there, as well. The Happy Hour and Belk Charity Day Sale have gotten me back in the game and I’m still waiting to find out how much I brought in by working the day of the sale. Hopefully that will bring me even closer to my goal. At this point, I’m not worried about reaching it, but I am a little disappointed in myself for not working on it the way I had planned at the beginning. But as I’ve said before, I just took on too much and got caught up in all of it.

I’m getting up early to get in a quick 4 mile run in the morning. I wish the sun was up a little earlier so I could run outside, but I suppose the treadmill will have to do for now. I have been tempted to sleep in, but with only a few short weeks left and already being behind, I have to stay on top of the training. It’s going to be an intense month leading up to this race.

 

Take Steps, Be Heard

It has been nearly 24 hours, but I am still exhausted from this weekend. It was so full of events and fundraisers and running and laughter and crying and meeting up with old friends. I am spent. And while I don’t have the time, or the energy, for that matter, to get into everything that happened this weekend, I did want to tell you all a little about the Take Steps for Crohn’s and Ulcerative Colitis event on Saturday. (And, no, I definitely did not take any pictures… I didn’t even have time to sit down! But thankfully, there are lots of pictures floating around.)

As you may know, I’ve been a part of the planning committee for this walk for about 6 months now. It has been a great experience, but it has also been a lot more work than I had originally anticipated. We have been meeting once a week for more than a month and prior to that it was still every other week. And there was a long list of things that needed to be done on the days in between.

But the event really came together this weekend. My wonderful husband and brother-in-law came out to help set up in the morning. I arrived a little bit later to join in. There was a lot going on, but I CCFA take steps walk crohn's colitis walkers stephanie hughes stolen colon ostomy blogfeel that we all coordinated really well to make sure that things ran smoothly. My parents also came out to help with the walk.

It turned out to be a beautiful day. I kept checking the weather in the days leading up to it and it wasn’t looking too good at one point, but it ended up being warm and sunny and the clouds rolled in just in time to provide some shade for the walk.

CCFA take steps walk crohn's colitis Renee Chou WRAL emcee stephanie hughes stolen colon ostomy blogMy main job for the day was coordinating the “talent.” This meant working with the emcees, speakers and band. I had worked previously to set up things for the emcee. We had the lovely Renee Chou of WRAL join us to kick off the festivities, and radio personality David Wilson to announce the top fundraisers following the walk. Both were wonderful to work with and did a great job. There were a few hiccups along the way, but thankfully, we were able to take care of everything in enough time that I don’t even think anyone else noticed. And let’s be honest, that’s really the goal of any event, no matter how well planned!

I didn’t stop the entire day. Not including everything I did prior in the day, which began at 6 a.m., I was at the walk from 12:30 until about 9:30 that evening. The event itself was wrapped up around 6:30 or so, but then the clean up and tear down begins! It was a lot of work. Events are always easier to put together than they are to tear apart. One-by-one, everyone soon dropped off. It ended up being just me and the local CCFA rep putting the last boxes away and making a final sweep of the area.

Looking back, I know there are things that we could have planned better to make the event go even smoother, but all in all, I think we pulled it off. We had nearly 700 participants who all seemed to have a great time and we raised close to $110,000 that will help fund research to find a cure for Crohn’s disease and ulcerative colitis and promote events for patients of these diseases.

I worked with such a great team on this project. Many of us were new to the event, so there was a bit of a learning curve, but I couldn’t be more pleased with the outcome. I met some wonderful people who I look forward to working with again in the future. But mostly, it feels good to have accomplished something so big that is going to make such an impact.

CCFA take steps walk cure crohn's stephanie hughes stolen colon ostomy blog