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The end of UCVlog

December 23, 2013

Friends, we have a bittersweet announcement to make: The UCVlog project has run its course. These will likely be our last posts to the website.

We’ve had a good run these last five years, but it’s time for Nadia and I to move on to new projects. We never envisioned that UCVlog would get as big and popular as it is. We’ve been incredibly blessed to share our lives with you this last half-decade, and we’ve conversed or met thousands of people along the way. You all have impacted our lives in ways great and small, and we thank you for sticking with us this long.

Why I started UCVlog

Following my second of three surgeries, I had a lot of free time on my hands. I was between jobs, and my surgeon recommended I take at least six weeks to recover. I had an ostomy, and thought, “I wonder if others would be interested in seeing how an ostomy bag is changed?” Turns out, tens of thousands were.

Before UCVlog I was interested in video (I even worked at a couple television stations). While written blogs are great for some things, I thought vlogging would be a great way to connect with people in an intimate, personal way. At the time, there weren’t many health vlogs out there. Fernpixel started her vlog about six months before I did and she was really the only one committed and active at the time.

I started sharing my videos and found that they met a real need. Then Nadia started sharing her videos, and we teamed up to create UCVlog.

When I started the site, I didn’t think I’d ever have enough ideas to sustain it. Turns out I was wrong, at least for a time. Nadia and I made so many videos, but we did a lot more than that. Our ostomy supply drives were very successful: so many of you sent us your unused supplies, which in turn were delivered to third-world countries and people who needed them most. I’m really proud of the community for stepping up to help other people, and for Nadia in taking charge with those supply drives.

The project has run its course

In the beginning, I didn’t know how long UCVlog would last. How long would we continue to make videos? Until we’re 80 years old? The internet hasn’t been around for that long (well, at least in its present form), so it’s hard to imagine any website lasting for 20, 30, 40 years or more. Websites come and go, but that’s how it is with any media. Television shows eventually get canceled, the public gets sick of popular bands, and magazines and newspapers eventually go out of business.

Nadia and I are concluding UCVlog for several reasons. First, we’ve run out of things to say. It’s true. If you’ve been following us from the beginning, you know that, especially in the last couple years, we’ve been making less and less videos. We just don’t know what to talk about anymore. 200+ videos will do that. While Nadia and I continue to have small bits of news to report here and there about our health, we’ve each pretty much seen it all and discussed it already.

While we are moving on from UCVlog, don’t think that we’re leaving this community: we’re not. We’re just refocusing our energies on new projects. Nadia raises money for the CCFA and participates in her local support group. She’s also going to nursing school, which is a huge step for her. Her college career was basically stalled for four years because of Crohn’s. While all her high school friends are now graduating college, she’s just getting started.

You know as well as I do that with Nadia’s compassion, heart, and health experiences, she’s going to make a fantastic nurse! You all probably know from personal experience how much better it is having a nurse who “gets” it compared to having a nurse who doesn’t.

I’m staying active in this community in similar, but different, ways. I’ve been facilitating a support group in Florida for about two years now, using what I’ve learned about online support to help people face-to-face. I hope to stay active with Camp Oasis and other CCFA programs.

And my career path, just like Nadia’s, has been influenced directly by my health experiences. Five years ago, I was showing UCVlog to a former professor of mine. She was really impressed and said, “Have you ever thought of going to graduate school to study health communication?” I had not. I was never really interested in health until I got sick. Her suggestion planted a seed, and less than a year later I was enrolled in graduate school working on my master’s program.

What is health communication?

If you don’t know what health communication is, don’t worry: you’re not alone. Health communication is a growing sub-discipline of communication studies. Health communicators are interested in all kinds of things. Some are interested in health campaigns, such as the campaigns to eliminate smoking, stop texting and driving, or get people to use protection during sexual activities. Other health communicators are interested in how the media cover health topics, how journalists report about health. Lots of people are interested in how patients find health information online, how they assess the credibility of that information, and what they do with that health information.

I’ve been focused on chronic illness. I’ve been studying for 5 years now how people with chronic illness tell others about their illness, how they send and receive social support, how they find support in online environments, and how they challenge health-related stigma. I’m no medical doctor, so I’m not searching for any cures to illness. But until those cures are found, people like us need help and support, and outsiders need to be educated about how chronic illness affects our lives. Doctors need to be briefed about the patient experience. I don’t know if anything will become of my research, but hopefully it can make a difference for people with chronic illness in some way.

Right now I’m working on my PhD in health communication and will be finished by next summer. The goal is be a professor at the university where I can continue this line of research as well as teach. For my dissertation, I’m actually studying the online IBD community, many of the websites you are probably familiar with. There are so many exciting things happening online; hopefully the scholarly community thinks so as well.

We leave you in good hands

When we started, not many people were sharing their stories online. But now, especially in the last 3 years or so, so many more patients have come online to tell their stories. There are so many good websites, Facebook groups, and YouTube channels out there for people with IBD and ostomies. Hopefully you won’t miss us at all, as there are so many cool people online doing so many great things. I hesitate to mention them by name for fear of leaving somebody out, but it’s easy to find them. We’ve even been sharing some of their videos the past few years.

As for UCVlog, we’ll keep things up for a while, but not forever. People are still watching our videos and still emailing us, but at some point, our videos will start to get outdated. Yes, we could theoretically leave everything online forever and it wouldn’t cost us very much at all. But that’s not how we want to do things. We don’t want to give people wrong information, so sometime in the next 6-12 months we’ll be taking down our videos and posts. We’ll keep our Facebook group going for a while, as long as people are talking on it.

This also means we’re concluding our ostomy supply donation program. You all have given so much, thousands and thousands of supplies. We’ve probably collected well over $100,000 worth of supplies, maybe double that, which really blows our minds. Fret not! If you have unused ostomy supplies, there is another place to send them to! Girls With Guts and Osto Group have partnered together to collect unused ostomy supplies to distribute to ostomates who need them. Check out their flyer for more info on where to send your supplies.

Well, this post has gone on long enough. Be sure to read Nadia’s goodbye as well. Feel free to continue emailing us if you have questions or concerns: we’re always glad to help. If you want to continue following my work, check out my professional website, as well as my new video game and nerdom blog D-Pad.

Keep fighting,

~Dennis

3 comments

  1. No don’t take down the videos. Those videos are so important to many people including me. I have learned so much from watching your videos. And even today I still watch them on YouTube. And many people continue to watch the videos as well. Those videos really help people who have ostomies cope with their situation, and they help them feel good about themselves. And most importantly, the videos show people with IBD that they can live a normal life after surgery. And it’s all because of the hard work you and Nadia did throughout the last five years. I understand your reasons for leaving but, you really should leave the videos up. Because they will continue to help people for many years to come. And that feeling is amazing. I wish you and Nadia the best. And I hope you stay in good health for a long time. Thank you for all of the support and education. You and Nadia are a wonderful example for every person living with IBD.


  2. Thank you infinitely for all you’ve done but I would not recommend that you dismantle all the work you’ve done because it could serve well so many more people who have yet to encounter similar experiences. You can caution people that the info is no longer updated and that things could be changing with time in terms of medical avenues but I still believe that overall it would be extremely helpful because you have had one of the most thorough and transparent approaches. Do not forget how desperate one can get for info and shared experiences when going through the very toughest challenges we’ve been through. All the best to both of you in future endeavors.
    best,
    Marianne


  3. Thank you so much Dennis and Nadia. When my son was diagnosed with UC I began researching online and I am so thankful to have found your site. So many of the other sites showed all the negative aspects of UC and it was really scary. When I found UCVlog and watched the videos it gave me hope that he would be okay. He now has a jpouch and is doing well. He is back to work and is feeling what he calls his new normal. I think you will be missed more than you realize. Good luck with the rest of your lives. I will be praying for you both!



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