Tag Archives: research

Just hanging out tonight

I am very excited tonight that I will be participating in my very first Google Hangout on Air this evening!!

I’ve been doing some dabbling in Google+ lately and have realized how great the site is and how much you can do with it. There I met Frank Garufi, Jr. who is a strong voice for the Crohn’s and ulcerative colitis community. He has an amazing story that you should read. His son, Domenic, was born with Crohn’s disease and has lived with it for all 7 years of his life. You can read his whole story on Frank’s Google+ site for The Crohn’s Colitis Effect. I know how difficult it was to be 13 and dealing with these symptoms. I can’t imagine living with it from day 1. He’s a very strong little boy.

I had my first hangout with Frank a few weeks ago and got a chance to talk with him (basically) face-to-face. His mission now is to raise awareness for these diseases which will hopefully lead to more research for a cure. He’s been a great contact to make in the IBD world.

And tonight, I will be doing a live interview with Frank on Google hangouts! You can find more information at this link. It will be 8:30 this evening. I’m really looking forward to being able to talk about my experience in this new forum. I’ll look forward to seeing you all then!

Celebrating my first World IBD Day

Today is World IBD Day 2012: a day to spread awareness of Crohn’s and ulcerative colitis. It’s a perfect example of what I hope for this site to be someday. Even though there have been previous World IBD Days, this is the first one I have personally taken the time to recognize.

World IBD Day inflammatory bowel disease may 19 crohn colitis ostomy stephanie hughes stolen colon blog

There are a number of reasons that I started this site. One was to be able to keep people updated. I’ve seen such an outpouring of support over the past weeks and I wanted to be able to let everyone know how I’m doing and this is the most efficient way to do that.

Secondly, I did it for myself. For years I never talked about my Crohn’s. I wouldn’t NOT talk about it. If someone asked me or if it came up in some way, I wouldn’t avoid it, but it wasn’t usually information that I would volunteer. Last July I posted “My name is Stephanie and I have Crohn’s Disease” on my other blog. It was the first time I really put it out there and it was a good feeling to finally talk about it. Since then, it’s become a form of catharsis for me to be able to share my feelings and experiences.

Another reason is because I find that since so few people want to talk about it, there are not many places to go to for help and reassurance. I hope that I can be a voice that shows you are not alone. I’ve been blessed over the past weeks to find others out there who are dealing with the same things that I am. I’ve spent years not really having anyone I can relate to. It has been very encouraging to find others who know what it’s like. I hope that I can provide that same encouragement to others who feel alone and as though no one understands.

And finally, it’s because I have found that very few understand this disease. Nearly every time I tell someone I have Crohn’s Disease, they tell me they know someone else who also does, but they don’t really know what it means. In the US alone, 1.4 million people live with IBD (Inflammatory Bowel Disease, which includes both Crohn’s Disease and ulcerative colitis). And nearly 1 million people in North America have ostomies, with another 70,000 having surgery each year. And the numbers are growing. And with that, it’s becoming more important that people understand IBD, because odds are you know someone who suffers from it. (Well, most of you know me, so you’ve already helped prove my point!)

I’m just getting started with my site, but someday I hope for it to be more than a blog. I hope it can be a platform for advocacy and change. I’m in the early stages of working on how to do that, but it has become a passion of mine over the past months and especially the last few weeks since I launched the site.

I pray that as we move forward with awareness and research, that those who live with these diseases will no longer feel the shame of the stigma that has too long been attached to IBD. And I hope that today on World IBD Day, you’ll think of those you know, and those you don’t, who suffer from IBD.

For more information on IBD and for some of the blogs that have been a great encouragement to me, check out the links under Crohn’s Resources.

Taking steps

I had a great time today volunteering for the Crohn’s and Colitis Foundation of America’s annual Take Steps walk. It’s a 3 mile walk that took place on NCSU’s Centennial Campus this evening.

ccfa crohns colitis take steps walk stolen colon ostomy blog

It was a very last minute thing that I got involved. I knew about the walk for a while, but in all honesty, I’m not a big walk/fundraiser person. They just don’t get me excited. However, since there are no other major fundraisers for Crohn’s Disease research in the area, I probably will get more involved in the future. But it was about a week ago that I thought about the fact that I just want to be more involved in the local Crohn’s community in general, so I looked up the walk and found out that it was this weekend. I got in contact with the coordinator and she told me they could definitely still use some volunteers.

It’s probably a good thing I wasn’t signed up for the walk because my ankle has been especially bothering me the past couple of days. I was actually concerned last night about being able to even make it to the walk because I was having trouble putting any weight at all on my ankle. But it was feeling better this morning and I’m glad I was able to help out today.

I started by helping with the bounce house, making sure the kids take off their shoes and don’t trample each other. But then they posted me along the route to help direct those walking. Not a lot of action, but glad I could be involved.

I really wish there were some other fundraiser options for Crohn’s Disease, but at this time, I don’t know of any others. That’s actually something I would be interested in for the future. Maybe I can put together some sort of charity. Hmm… ideas, ideas.

But today makes me think about the future of Crohn’s research and it makes me excited. Just the other day, one of my cousins was telling me about research being done in a lab she works at in Colorado. I think in the coming years, we’ll see some breakthroughs. I wish I had the time to wait for those to come to fruition, but unfortunately, time is not a luxury I have.

I’m proud to have been able to be a part of an exciting event today that raised over $84,000 for Crohn’s and ulcerative colitis research. I look forward to being able to take even bigger steps in the future.

For more information on the CCFA, check out my Crohn’s Resources page.