Tag Archives: research

Please excuse me, my brain is fried

So as anyone who has been following The Stolen Colon for any length of time probably knows, I tend to over book myself. I think this happens for a couple of reasons… first of all, I do have a problem saying ‘no.’ I’m just not good at it. And secondly, almost all of the things I get involved in I really WANT to do, which makes it even harder to say ‘no.’

Right now, I’m in the middle of a bunch of big life moments. Four, to be exact. I have made my way through two of them: Running a half-marathon and being a part of the planning committee for CCFA’s Take Steps Walk. But I am still having to prepare for the next two: Finishing up my graduate school research study and taking a really big trip with my husband.

I have been pretty overwhelmed with things lately and, sad to say, finding time to write on here tends to be the first thing that falls to the side. Especially when I feel that I am spending every waking moment dealing with this research project and whenever I have a moment to breathe, I feel that my brain is so tired that trying to do something like writing more just doesn’t sound appealing. Usually anything beyond sitting on the couch or taking a nap doesn’t sound appealing.

research project graduate school study final paper writing stephanie hughes stolen colon crohn's disease ulcerative colitis inflammatory bowel disease ibd blog ostomySo I am really looking forward to having this research project completed. (It has to be in just 5 days!) It has been a really interesting project, as I have had to opportunity to focus on IBD-related things, and I am excited to share it all with you at some point.

I am also looking forward to tell you about the Take Steps Walk we had over the weekend. It was a crazy day of running around and trying to get everything done, but we had a beautiful day for it and raised over $100,000!

But all of that will come soon. As I mentioned, I will finish up this project by next Monday and then I hop a plane for Europe just 3 days later! I am really excited to have a few days of vacation and nothing to worry about besides not getting lost in Italy and finding some place with yummy pasta. And once I get home from that trip, it’s time for a breather. I am trying my best not to make many plans for the weeks that follow because I just want to enjoy some down time.

I’m in the homestretch. The light at the end of the tunnel is rapidly approaching, which just means I have to kick it into high gear for the last few miles. I look forward to catching up on here soon. So, until then…

IBD Awareness Week in retrospect

We just wrapped up another Inflammatory Bowel Disease Awareness Week yesterday. There are a number of different awareness days throughout the year for Crohn’s disease, ulcerative colitis and ostomies, but this past week is the official one that actually passed as a resolution in the U.S. Senate a couple of years back. And I have to say, I think the 2013 IBD Awareness Week was the strongest yet.

ask me about my crohn's disease ulcerative colitis ostomy ibd inflammatory bowel disease awareness week december 1-7 2013 stephanie hughes stolen colon blog

thegreatbowelmovement.org

I try to keep my finger on the pulse of the online IBD community and to be aware of what people are saying and what sorts of events are going on at any given time. I was really encouraged this week to see so many people speaking out, telling their stories, hosting events, changing their profile pictures in honor of spreading awareness. I mentioned a few weeks ago that activists were really coming together and I think we saw a lot of this in the past week.

There was a special edition of the IBD Round Table held in honor of the week. A fellow ostomate was featured on an episode of Tosh.0 (not specifically for Awareness Week, but it was good timing!) And I have been overwhelmed by the response received by the Huffington Post article that Rebecca Kaplan and I wrote about some of the other things that come along with IBD other than using the bathroom. Seriously, this week had some awesome awareness being done!

Being inducted into the inflammatory bowel disease club isn’t something I would wish on anybody. But since I am a part of it, I have to say that I have never been more proud to belong to this community of people. You all amaze and inspire me every day. You remind me why I started The Stolen Colon last year and what I hope to be able to accomplish with it in the future. 

But what I hope most of all is to see IBD Awareness Week continue. And I realize that keeping going at the same pace that we have over the past week isn’t plausible day after day, week after week (advocacy can take a lot out of you!), but we can continue to keep the passion alive and continue to speak out about it. I look forward to many more acts of advocacy with all of you as we continue to spread awareness and push for a cure for Crohn’s disease and ulcerative colitis.

On the other side of the camera

I spent about 5 years working in TV news. And I really enjoyed my time there. It’s fast-paced, you have to think on your toes and you never know what might happen that day. I was always in a behind-the-scenes position, whether that included writing the copy for air or determining the stories for coverage.

This week, I got a unique opportunity to switch sides. A group from Novo Nordisk came by to record an interview with me about living with Crohn’s disease. The reason for it is because they are currently developing medications for patients with inflammatory bowel disease and they will be using these interviews to show their employees why they are working on these drugs and so they can see the people it will be impacting.

These drugs are in the early stages of testing, so it will likely be years before they are available to the public, but I have a lot of respect for what this company and these people are doing. And this isn’t some schlub operation. These people came from Denmark, where the company is headquartered, with all of sorts of professional equipment and gear. There were four of them that I worked with: a producer, a photographer, a sound engineer and a member of the R&D team.

They set up their equipment for the interview, moving things around and setting up a good shot. It was definitely interesting being the one who was being interviewed. I got a little nervous and tongue-tied at times and had to stop/rewind when thinking through my past history with Crohn’s. They tell me it went good, so I’m hoping they weren’t just trying to be nice! After that, we shot some B-roll of me doing things around the house such as reading, blogging and taking Rylie for a walk.

interview set up video behind the scenes recording filmingIt was a very interesting experience to have a camera crew following me around, asking me to sit in a certain light and to have them filming me while I’m doing things that I would normally do during the day (I actually am writing this sentence while they are filming me blogging and writing. So this sentence will actually be a part of the filming in the end.)

They had me sit for a while as I typed and ask you can see from the previous paragraph, I did some actual blogging while they were filming!

It was a great experience. They were such a nice group and I really enjoyed getting to work with them. They made the process fun and not so daunting, even though they were speaking Danish most of the time, so I have no idea what they were really saying. It may be a long while for them to get the final product out, but I will look forward to seeing that in the future.

I feel really proud to be a part of this. To be able to provide information and motivation to potentially the tens-of-thousands of people who work for Novo Nordisk, makes me feel like I’m making a difference. I pray that what we’ve done today will make a major impact on the future of Crohn’s disease and ulcerative colitis.

I got connected with this group through my GI at UNC, so when they found out that I was heading back to see my surgeon the next day, they asked if they could tag along. So I met up with them yesterday morning and they filmed me walking into the hospital and checking in and sitting down with my doctor.

There was another cool surprise that came out of this. They were already planning on being at UNC to interview another patient. When I posted on my Stolen Colon facebook page that I was doing the interview with them, I received a message from someone who I had connected with online in the past and turns out, she was the other patient they were interviewing. Such a small world! She doesn’t even live in the area, but is working with my GI and the research lab at UNC while she’s on break from school.

stephanie hughes sami kennedy interview meeting friends unc stolen colon crohns ostomy colitis blogSo of course when I found out she was going to be at UNC as well, I said we had to meet up! So even though we only had about 20 minutes between the end of my appointment and the time she began her interview, it was great to get to sit down with her shortly and hear more about her story and how she ended up here, of all places. So everyone, meet Sami. You can read some about her life and living with ulcerative colitis on ImproveCareNow’s blog. Part of what she’s doing at UNC is research on IBD and that’s what she’s hoping to pursue professionally. I’ll be excited to see where this takes her in the future.

Overall, it was a great experience being on this other side of things and I hope for some more great opportunities in the future.

My thoughts on CCFA’s new ad campaign

There has been a lot of discussion in the IBD community over the past few weeks regarding the CCFA’s new ad campaign, Escape the Stall. I’ve read posts of outrage, shame, confusion, support and unsurety. I have thought long and hard about the campaign and my opinion of it. I definitely see both sides of the argument.

CCFA escape the stall ad campaign stolen colon crohns ibd ostomy blog

The basic disagreement with the advertisements is the fact that they focus solely on having to go to the bathroom. Many feel that this belittles the disease to simply a stomach ache and doesn’t show the many other symptoms that IBD patients deal with every day. Those of us with Crohn’s disease and ulcerative colitis have long fought against the “but you don’t look sick” stigma and the assumption that we’re making a big deal out of nothing.

Yes, this ad focuses on one symptom. But that one symptom is a very big part of having IBD. There are dozens of other issues that can come along with having a digestive disease, but if you are going to pick one that encompasses the greatest number of people, frequent and urgent bowel movements would be it.

I, of all people, understand how much more is involved with having Crohn’s disease. I definitely have dealt with the frequent and urgent need to use the bathroom. I had days where I spent more time in the bathroom than anywhere else. I have looked in the toilet and seen nothing but blood in there. I have lost so much weight that I would pass out if I stood up too fast, nearly falling down the stairs once. I have had extreme stomach cramps where I wished I could claw my intestines out of my body because I honestly thought it would feel better. I have had blood, iron and potent medicine infusions/transfusions. I have been poked with a needle more times than I can count, up to six times at once trying to get a good stick. I’ve been so exhausted that I couldn’t take part in many things I have wanted to do. I have had joint inflammation so bad that I couldn’t get out of bed and my ankles swelled up to the size of a grapefruit. I have had iritis that caused pain in my eye and blurred vision. Hell, I have had surgery to have my colon removed, and none of those things are present in the CCFA ads.

escape the stall ccfa ibd ad campaign stolen colon crohns ibd  blogBUT, I don’t believe this is the point of these ads. As a communications girl, I get what they were trying to accomplish here. They are hoping to start a dialogue. It shows that IBD doesn’t care who you are. The idea is to have people see these ads and realize that they are probably not very distant from someone who is affected.

Also, spreading awareness for debilitating diseases is not an easy task. It is human nature to not want to deal with unpleasant things. If they put an ad out there showing a bloody toilet bowl, people are apt to turn away and not even read what it’s about. Look at so many cancer and diabetes awareness campaigns. They don’t show people slowly dying in a hospital bed (for the most part); they show the faces of men, women and children who are affected by these diseases. They show that these diseases can affect anyone: you or someone you know. There is a place for “shock value” but we’re not there yet. Yes, the ads are a little lighthearted for such a serious disease, but we have to start somewhere. I think the CCFA is making a step in the right direction.

escape the stall ccfa ibd ad campaign stolen colon crohns ibd  blog