Videos to educate about what is and how to live with an ileostomy. We interviewed the author

Would you be willing to teach your stoma? Would you be willing to explain how you empty your bag? Would you be willing to give details of how you felt before and after ileostomy operation that you had to practice because of your ulcerative colitis?

Maybe don’t you dare for several reasons, shame to appear on the Internet and the people can see you around the world, you don’t know how do it, you have the desire to safeguard your privacy, etc.

Dennis is an American boy who not only dared to tell and show all these experiences on video, but also he does it well, with great success on Internet, because your videos can be viewed in a lot of pages that it deal about the ostomy.

We have been in touch with him and we did him an interview, which he tells us their motivations and future plans. As in other articles, you can read the interview in English and translated into Spanish.

The interview:

You have created a blog ( http://ucvlog.com )  and you have also a channel in You Tube (www.youtube.com/user/UCVlog ). You use them to spread your experience like a person who suffers ulcerative colitis, and stoma carrier. What was before, the idea of writing a blog, or the channel in You Tube?

Before I had my surgery I found a couple videos on YouTube from people who had gone through surgery. I also found a couple blogs. I found, though, that people didn’t give very specific information about what life was like with ulcerative colitis and after surgery, so I came up with the idea of making a few videos. Once I started making videos I realized that this disease had completely changed all aspects of my life. So I kept making videos and now have over 100.

In which moment and how did you get the idea of recording these videos?

I got the idea a couple weeks after my second surgery as I was recovering and lying awake at night. For over a year I had been struggling with my Christian faith in God and couldn’t understand the purpose of getting this disease. Then I realized that I had abilities to tell my story to others and that I could serve God through these videos. I found that I could turn a negative experience (getting the disease) into a positive one through videos.

Were your parents or friends against this idea? Were there any handicaps?

None of my friends were against this idea. Initially my parents thought I was sharing too much personal information but after a few months they saw that I could help other people through it. There weren’t any handicaps to starting the project but once I got into it I realized that if I wanted to do it right that I needed to invest a lot of time and some money to make it high quality.

Which is the objective you pursue by spreading these videos?

I know that when I was first diagnosed with the disease I didn’t have any idea what life would be like. Similarly, after surgery I didn’t know what life would be like with an ileostomy or a J-pouch. My purpose is to help other people understand what they are going through and what they will go through. It also helps family and friends understand what their loved one is suffering with. In some of my videos I try to shape people’s attitudes and point them to more positive ways of looking at the world in spite of having these terrible diseases.

During the process of recording and editing your videos: does anybody help you? Or you do it all by yourself?

I currently film and edit the videos entirely by myself. I also take care of everything that is seen on the web and on my website UCVlog.com. I currently have a couple partners that I work with in translating the videos. I don’t know other languages well so they help me translate. I also have a friend who helps me come up with some of the graphics for the website.

At the moment, your channel in You Tube has more than 200 subscribers and the videos have been reproduced more than 6500 times  What do you think about this success? Which is the reason for this success?

Here are the actual numbers: 216 subscribers, the channel has been viewed 6800 times. I currently have 103 videos posted, plus nine translations. Total, all of the English videos, plus the translated videos, have been viewed over 85,000 times. The companion website, UCVlog.com, has been viewed 25,000 times.

About the success I am very surprised and very grateful. My videos have helped thousands understand this disease and that is very humbling. I think there are many reasons why the videos are so successful.

1. they are specific and focused with their topics so people can find exactly the information they want.

2. I don’t just post the videos and leave people alone, but when people contact me I take the time to answer their questions and build a relationship with them.

3. the videos are generally of a high quality both in presentation and content, so I think people trust them and are attracted to them.

Did you think your videos could have this repercussion? Could you imagine that so many users would see your videos?

I never knew my videos would grow in popularity so fast. The videos have been up for nine months now. When I originally started the site I set a goal of having my videos watched 100,000 times in the first year. At the time I thought that was an impossible goal and didn’t think I could accomplish it, but I wanted to shoot for it anyway. Currently I’m on track to beating that mark in four to six weeks, and hopefully after a year the videos will have been watched 125,000 times.

At this moment your videos are subtitled in Spanish and Japanese. Will they be translated into any other languages?

I also have plans to translate the videos into Catalan, which is mostly spoken in Spain. I had never heard of this language before and I don’t know if very many people will watch those videos, but since I have a partner who wants to translate them I won’t stop her. You can find the first Catalan video at http://www.youtube.com/CatalanUCVlog I haven’t met anybody else who will help me translate yet but as soon as somebody offers I will go for it. In high school I took a little bit of German, so I’m thinking of contacting some of my German viewers to see if they can help me translate them to this language. But all of that takes time. I’m mostly focused on translating into Spanish at this point but it takes a lot of time.

There are no many videos subtitled in Spanish by now. Will you try to translate more videos into Spanish in the future?

Yes, I plan on translating more videos into Spanish. Already I’m having people contact me from Mexico and Spain so I see there is definitely a need. My translator gets the work done very fast. It takes me awhile to make a transcript of the videos and then to add the subtitles, but I’m trying to do a few videos every month. If I can get more people to help me make accurate English transcripts the project can go faster.

Are you thinking about any other new project?

I have several projects I’m working on. I have more ideas for videos so that is an on-going project. Also, I’m trying to get videos from my viewers for a project I call the Gutbending Declaration. Basically I’m looking for videos of people who find that living with an ileostomy is better than living with disease. I’ve also written a memoir with reflections about how colitis has  changed my life for the better, so I’m trying to find a publish for that right now.

From the web of our Association of People with Cronh’s Disease and Ulcerative Colitis in Málaga (www.accumalaga.es) we are spreading your videos, because we think they can help our users. Do you know our web? What do you think about it?

From ACCU Malaga we commend Dennis for the work being done unselfishly and for the benefit of others. Their work is commendable. In addition, we thank Dennis for his collaboration in making this interview.

You can see all of the videos of Dennis, subtitled in Spanish, in our video gallery:

Ulcerative Colitis. First surgery

Second surgery. Ulcerative colitis

Third surgery. Ulcerative colitis

My scars. Ulcerative colitis

Sleeping with an ileostomy bag

How empty the ileostomy bag

You can comment these videos and give your opinion on them. We will be adding new videos as they are subtitling.

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