Category Archives: IBD Research

Inflammatory Bowel Disease: by the numbers

IBD Awareness Week

ibd inflammatory bowel disease awareness week crohn's disease ulcerative colitis ostomy stephanie hughes stolen colon blog

1,400,000: Americans living with IBD

70,000: New cases of IBD diagnosed in the U.S. each year

50,000: Children in the U.S. diagnosed with IBD

1932: Year Dr. Burrill B. Crohn first described the disease that would become known as Crohn’s disease

5: Types of Crohn’s disease (Ileocolitis, Ileitis, Gastroduodenal Crohn’s disease, Jejunoileitis, Crohn’s colitis – Here’s some more info on this)

70%: People with Crohn’s disease who will eventually require surgery

20%: People with ulcerative colitis who will also have a close relative with the disease

750,000: Annual physician visits by IBD patients

100,000: Hospitalizations every year of IBD patients

119,000: Patients on disability a year due to IBD

30%: Patients who have surgery for Crohn’s disease and will experience recurrence of their symptoms within three years (increases to 60% within 10 years)

90%: Ulcerative colitis patients who will have at least one relapse of active symptoms within 25 years of diagnosis

50%: Crohn’s disease patients who will experience complications within digestive tract (i.e. stricture) within 20 years of diagnosis

3,100,000: Approximate work-loss days per year in the U.S. due to IBD

$2,200,000,000: Annual direct / indirect cost of IBD in the U.S.

$8,265: Mean annual direct costs for Crohn’s disease per patient

$5,066: Mean annual direct costs for ulcerative colitis per patient

0: Cures for Crohn’s disease and ulcerative colitis*

*I realize that some specialists will say that removing the colon is a cure for ulcerative colitis, but I don’t think any disease that often still manifests in other ways after an organ has been removed should be considered cured. Just my opinion.

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.

Working on the Walk

For years, I knew I wanted to do something to make a difference in the IBD world. I thought about what options there are out there, but I soon found that there aren’t a lot of them. Let’s be honest here, I’m not a doctor and I’m not a nurse. I have some good friends who have gone into the nursing field, and I have so much respect for them, but in my experience has a hospital patient, I’ve realized that it’s not the path for me.

Then there’s the pharmaceutical path, where you are doing drug tests or promoting new medications. But I’m not a science person. I am a writer and I enjoy creativity and projects. I knew I would not be happy in this type of position.

So I’m left with the question: how can I help? That’s what lead me to get involved with the Crohn’s and Colitis Foundation of America. I have been a supporter of the CCFA for a long time and have attended several events, but I had never actually gotten involved in a volunteer capacity. Last year, when the realization of how sick I was truly manifested in front of me, I decided to get involved.

I was a last-minute addition to the Triangle Take Steps Walk last April (and I wrote about it in one of my very first blog posts on The Stolen Colon: Taking steps). I did a couple of other events, as well, last year and ultimately got involved in Team Challenge, but I wanted to do more. So I signed up to be a part of this year’s Take Steps Walk committee.

We’ve had a couple of meetings, so far, and just had another last night. This is a really great group of people who I am so excited to work with. Some have done a number of walks in the past, others are brand new like me. But I am looking forward to getting to know all of them and helping put on this year’s walk. I was also named the Publicity Chair, which means that I get to work with the media stations and newspapers and write press releases and interest pieces. I’m doing what I love and doing it for a cause I believe in! I can’t ask for anything more.

A humbling proposal

Stolen colon crohns ostomy blog ccfa team challenge half marathon colitis team challenge tuesday

It’s Team Challenge Tuesday again and if I am going to be completely honest, this was not my week for training. I had a hard time getting out of bed each morning and sticking to a decent length workout. I have a goal to workout 5 times a week for 45 minutes. I started at 35 minutes and have been raising it by 5 minutes each week.

Now that I have my cast off, I was able to go for an actual outdoor run this week. I also realized how much harder it is to run outdoors than it is to run indoors! Holy moly, I didn’t even make it for a half an hour! I was so exhausted and out of breath by that point. On top of that, my calf muscles have been really tight this week and I have no idea why. I didn’t do anything differently, but they’ve been very sore and have been making running a bit more difficult. I stopped early and spent some time stretching. They’re feeling better, but still sore.

Back to my point, now. For any of you who are training for a race: Get Outside! There is such a difference in your endurance and that’s where you really learn how to breathe through your workout. For me, breathing has been such an essential part of the whole equation. Once I figured out how to breathe correctly, I moved very quickly from having to stop every mile or so to making it through the full 13 miles.

Working out in the gym definitely has it’s place and perhaps the bulk of your workouts may still take place there, but try to get outside once a week. That’s probably more plausible at this point since it’s so cold and you can do the outside workout on the weekend.

On a different note, I received a very humbling request this week. Every year, each Team Challenge chapter has a team honoree whose life has been directly impacted by Crohn’s disease or ulcerative colitis. Many people who get involved with Team Challenge may not have a direct connection to IBD. The basic role of the honoree is to be someone that the participants can connect with and to share their story for those who don’t have or don’t know someone who has IBD.

Well this year, I am very honored to have been asked to be the team honoree. I am excited to have the opportunity to share my story with those who will be training with us and raising money for Crohn’s and colitis research. I am looking forward to meeting everyone who will be involved and I am working on putting together a short video that can be shared at any group meetings that I won’t be able to attend. (Perhaps I’ll even post it on here once it’s done.) I am very proud to be a representative of the IBD community for this group. The hardest part is trying to fit my story into a 3 minute segment!