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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

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All good things come to an end

December 23, 2013

Following my first ostomy surgery 6 years ago, I found very little information on the internet to guide a girl like me through the tumultuous ups and downs of this disease. Navigating through an illness would have been a bit easier to grasp if I had someone to walk me through who understood this from a girl’s perspective.

However, in those early days, there were a handful of girls with videos on the internet who made this disease sound almost like a death sentence. Filled with doom and distress, I stumbled across videos that were put on YouTube by Dennis, and with the guidance of those videos, I was able to pick myself up and find my way slowly through much of what was a dark mystery to me. Dennis shed light and understanding through his posts, and his how-to videos helped so much when dealing with my ostomy.

But the idea to make my own videos, documenting my own journey, made its way into my mind and stuck there. I decided to let my guard down and put myself out there, but with a message of hope. Thus began my journey of vlogging for other young women in the hopes that my story could help others. I was scared: I won’t lie to you. It was one of the most anxiety-ridden decisions I made, but like many decisions, once made, you put yourself into fifth gear and go for it.

A great partnership

A short time passed and Dennis invited me to join him on the UCVlog. That began a wonderful partnership and friendship that has lasted several years. Hopefully we could shed some light on others’ journeys and help them through a time of need. Our videos could be viewed in the privacy of their own home or hospital bed, and we would be there–two friendly faces that knew what it was like to be where you are or were.

Who knew it would become so successful, and the lives of so many would be affected by the message we wanted to share? We tried hard to bring all the information we could to you and produce videos that talked about so much in the IBD/ostomy/J-pouch communities. If it was relevant and important to share, we tried to bring it to you and lessen the burden of having to go through this journey alone.

We empathized, we understood, we offered a helping hand, we walked with some of you through the darkest days when you wanted to give up and give in. The reward was great, humbling, and overwhelming all at once. Laughter, humor, support, friendship, and education are some of the best offerings to a person who feels alone. We tried to deliver that through our blogs, vlogs, and posts on our website, as well as our Facebook and Twitter.

New direction

The time has come, however, to close this chapter of our lives as we move on to different avenues. The internet has become saturated with so much information from others that have put their stories out there. We are so thankful and proud that so many people are willing to help others through this journey. Everyone has a story to tell, and through sharing, it multiplies to help so many out in this community. It is the ultimate form of paying it forward. There are organizations more capable of carrying on the chain of help and guidance, assisting so many patients that continue to need help and support every day.

Both Dennis’ and my life have taken other avenues. My health has significantly improved since my latest surgery, and hopefully it continues to improve so that I can pursue other things that had been put off because of this disease. Primarily, I am working on my education and achieving my degree, along with my job, my YARNutopia page, and my ostomy support group. You will still see me active in the community to raise awareness and ensure that others continue to be educated and informed about inflammatory bowel disease. My job here at UCVlog is ending but my activism will never end. Dennis has gone on to so many other things as well, such as leading an IBD support group with the CCFA and researching the communication practices of patients like us with chronic illness.

I hate goodbyes

So, time has come to say goodbye to our UCVlog project. Within the next six months to a year we will be closing everything down and dismantling our videos, website, and eventually our Facebook. It is a bittersweet experience. There are tears running down my cheeks while writing these words, words that begin to end the chapter of my life that by far has been one of the most significant things that has ever happened to me. These are not tears of sadness, but tears of joy. I have immense joy for all that we have accomplished here at the UCVlog, for the lives that we have touched, for all that we have contributed to this community.

More than anything, I am thankful for those of you who have touched my life and made my journey so much easier just by reaching back to me. I feel like we are a circle of friends, bound together by understanding and empathy of a debilitating disease. You have invited me into your lives and your most private moments, and I love you all for your insight, your friendship, and for your willingness to share. I feel a connection to all of you. I wish I could come to each and every one of you and tell you how YOU have impacted my life and give you an enormous hug.

A simple thank you is not enough to express how much you have done for me…I hate goodbyes.

Love always,

Nadia

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Laura tells us all about blockages

December 6, 2013

Laura from Ostomystory recently had a blockage requiring hospitalization. Her blockage was more intense than my last blockage! She talks about what she experienced and how the blockage was cleared. The video is a little choppy, but contains a lot of useful information!

Keep fighting,
Dennis

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Silver Linings

November 25, 2013

A routine trip to the doctor turned into a drawn out ordeal this past week when a regular 45 minute office visit lasted nearly an entire day. I was sent into a long series of tests and CT scan of my abdomen over the suspicion of another abscess. It would not have been so bad, nor would I have been so impatient, but today I had plans; plans that were interrupted by this unexpected detour in my schedule. Shouldn’t I be used to this by now?

At this point, I should remember to chalk this up to “normal for Nadia,” and shake it off. However, this disturbance in my day not only affected me: I was supposed to be meeting someone for the first time, and I had made a commitment to meet them around noon.

Well, noon was long gone by the time I shuffled my way around the clinic, to the lab, to the hospital, to the waiting room, to drink the contrast needed for the CT scan, another hour wait, and then finally off to radiology. The entire time I was thinking that this was not the first impression I wanted to make today to this individual. A frazzled and frantic rush out of the hospital to my car and finally I was on the highway toward my destination–not bad. I am only about a half a day late.

Better late than never

I guess it won’t matter if I am on time or hours late–I was now on my way to meet a young woman around my age that I was introduced to only through the pages of Facebook. She has Crohn’s disease and is facing possible permanent ostomy surgery, and we had agreed that today we would finally meet face-to-face.

There is always that feeling of apprehension that comes with first meetings and first impressions. Will this be awkward? What will she be like? Will we understand each other? Will we be fast friends?

I didn’t have to worry at all. Instantly, we clicked. We bonded over the mutual understanding of this disease and from all things women our age think and feel about wanting a life outside of the entrapment of all that is tied into our illness. I decided I can’t keep this introduction and meeting to myself. She is someone that I want to introduce to everyone here on the UCVlog.

Why? Because meeting her was like looking at myself. The feelings she is having right now are those that I, and many of us, understand all too well. We are not only in the powerful grip of a disease we cannot control, but when this disease has taken a turn for the worse, the only way to overcome the progression is to take that dreadful step into life changing surgery. Those are the feelings we have when we run out of options. So, with that being said, I want to introduce Jordan.

A brief look at Jordan’s journey

Jordan was misdiagnosed with ulcerative colitis when she was an infant. She was eight months old when she began her journey. It was hard for me to imagine that she has lived nearly her entire life without knowing anything different than this. Jordan had a total proctocolectomy at 11 years old, lived with a temporary ostomy, had takedown surgery to use her j-pouch, and now, 10 years later, is facing possible j-pouch failure due to misdiagnosis and living her life as a permanent ostomate.

This was all too familiar territory for me. I know exactly what the emotional upheaval of being where she is at in her journey feels like. It kept hitting me during our visit that my journey began only a mere six years ago, and I tend to describe events in my life as “before” or “after” getting sick. It was difficult to comprehend living a life where one never knew a “before,” and how long Jordan has been going through all she has to face. She also battles hyperthyroidism and Celiac disease.

Let’s talk poop and life

There is this instinctive part of our human nature, I believe, that instantly connects us with people who are going through similar physical and emotional circumstances. That connection increases and becomes stronger when one can recognize and empathize with someone sitting right across from them who just “gets it.” Those that have gone through this know that facing permanent ostomy surgery is not an easy place to be. Some of us are thrust into this because there is no other choice: it is a life or death situation. Others are faced with this because the alternative is a depleted quality of life; again, there is no other choice.

No matter what, this feels like one of the most difficult situations to be in. The anxiety that accompanies surgery is off the charts; all the questions, all the what-ifs, the “how will I live the rest of my life this way”, and the big one: why me? The list goes on and on. Meeting someone who you can confide in and talk with candidly over topics that otherwise would not be discussed in casual company is an invaluable gift. There is no shame and no topic is off limits. Truth be told, I RARELY EVER show anyone my ostomy/appliance. Well, with Jordan, there was an understood, no holds barred rule, and before long we were comparing scars, I was flashing my ostomy bag, we were openly talking about poop and how we are learning to accept this fate.

Aside from the obvious topics of poop, intestinal troubles, ostomies, and j-pouches, topics such as: dating, college, employment, our futures, and living life independently were talked over in great depth with laughter and a few tears. It was as if Jordan and I had been friends for so much longer than just a few hours.

We find strength in numbers

There is immense value that comes with identifying others who do know and do understand all the ups and downs you are going through. I have the honor of having met so many others out there who do get this. I wanted Jordan to know and understand that she is NOT alone. There are so many groups, individuals, and friends that have impacted my journey. I have passed those all along to her, so you may see her from time to time on our page as well as others. We all benefit from support and share a common link that has brought us here.

It is an even rarer gift to have the pleasure to meet ostomates, j-pouchers, and IBDers face-to-face. I had this happen a few times in my life, and all of you online have impacted my life in a thousand positive ways. These are relationships and friendships that have made this unpredictable, painful, and crazy journey so much more bearable. I hope that I can make that same impact on others too.

It feels comforting to me that my journey through illness is not without reward. Taking this negative and trying to do something positive helps me on my path to acceptance. I have been trying to understand that everything happens for a reason, and the friends we meet along the way become the silver lining on dark cloudy days. Thank you to Jordan, and all of you, for being my silver lining.

“We enjoy warmth because we have been cold…We appreciate light because we have been in darkness…By the same token, we can experience joy because we have known sadness…” Unknown

~Nadia

Silver Linings

Silver Linings

Share a story about someone you have met through your journey with IBD that you feel understands everything you are going through. It can be someone you met online or in person.

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Sara discusses alcohol with IBD

November 20, 2013

Nadia and I get asked a lot about drinking with IBD: can you drink? How much? Can you drink after surgery? Questions you’ve likely asked yourself at one point.

Sara gets those questions a lot, too, and has a great video here sharing her perspective. Basically: if drinking doesn’t cause you any problems, have at it. If it bothers you, don’t do it. Simple as that.

Keep fighting,
Dennis

Question: What are your thoughts and experiences with alcohol and IBD? Share your story!

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Ostomy Lifestyle Films: Having a colostomy and enjoying basketball

November 8, 2013

Ostomy Lifestyle, a UK-based charity for people with ostomies, has excellent and inspiring videos about life after ostomy surgery.

Paul, 45, suffered from Crohn’s disease and now has a colostomy. In this video, he talks about his return to basketball, and how his ostomy allows him to live normally again.

Keep fighting,
~Dennis

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Guest post by Bo Parrish: Why not?

October 30, 2013

Bo Parrish, a semi-professional triathlete, writes today’s guest post. Bo has made incredible strides in overcoming Crohn’s disease and surgery, and his story is very inspiring. Check out his website at Change Your Mind for more info!

~Dennis

Why not?

Allow me to encourage you to alter your vocabulary in the slightest of manners. Rather than asking yourself “why” finish the thought with “why not?” If it’s one thing that a near death experience taught me is that “now” is all I’ve got!

I believe in my heart that human beings were created to thrive not simply survive. My life is a prime example of this observation and my only regret is that it took so long for me to discover. If there is one thing in your life that is keeping you from thriving, let me assure you that it is YOU. I understand that this is a tough realization to come to, but I offer my story as proof of this conviction….

Bo Parrish running

I was diagnosed with Crohn’s Disease at the age of 13. My life became a vicious cycle of fever, weight loss, anemia, stomach pain, chronic diarrhea and bone loss. I missed out on my life as a carefree teenager and adventurous college student. My days were spent in hospitals and sitting outside classrooms in fear of the next inevitable trip to the bathroom. Surgery was recommended on multiple occasions but I resisted. As devastating as the pain had become it was familiar and therefore predictable. Surgery was out of the question and I willingly continued on my pathetic path.

Bo Parrish riding bicycle

In 2006 my large intestine ruptured and my decision for surgery was stolen forever. If I wanted to continue living, I had no choice surgery was the only option. Miraculously, the last 7 years have been nothing short of incredible. Not only have I made a full recovery and embraced my life with an ostomy but have reached the pinnacle of physical fitness. To start, I married my marathon coach and wife of my dreams. I have become a semi-professional, nationally sponsored triathlete and runner and have had the tremendous honor of building a platform creating awareness for an organization that I owe my life too. My personal vision now is to encourage and inspire others too see change as a blessing and not a burden. If I could have known how great life could be on the other side of surgery, I would have volunteered for it rather than resisting it.

Bo Parrish swimming

If there is anything I would hope that you glean from my story is that anything is possible so “WHY NOT” do something about it today!

~Bo

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