Posts Tagged ‘video’

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Exclusive interview with Ally Bain, creator of Ally’s Law, and her gastroenterologist Dr. Rubin

December 19, 2011

Recently we were contacted by WestGlen Broadcast Public Relations as part of a nationwide campaign to spread awareness in the inflammatory bowel disease community about Ally’s Law (known as the Restroom Access Act). Ally Bain and her gastroenterologist Dr. David Rubin offered us an exclusive video interview to spread awareness about this law. This was a phone interview with Dennis and I because we were all in different locations.

David Rubin is an associate professor of medicine, co-director of the Inflammatory Bowel Disease Center, and director of the Gastroenterology, Hepatology, and Nutrition fellowship program at the University of Chicago (UC).

Ally Bain was diagnosed with Crohn’s disease at age 11 and at age 14, Ally experienced a Crohn’s flare up in a department store and had an accident because she was denied use of the employee-only restroom. Since then, Ally has dedicated herself to raising awareness about Crohn’s disease and the rights of people living with the condition by creating “Ally’s Law.”

There are many resources where you can learn more about getting involved to help legislation pass this law in your state. Check out CrohnsAndMe.com as well as CCFA.org to learn more and find additional information.

We feel very honored to have been given this rare opportunity. We should all do our part and get involved in this movement because “everyone deserves restroom access.”

“Awareness is empowering.” ~Rita Wilson

~Nadia

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Ostomy Lifestyle underwear and swimwear show 2011

December 15, 2011

Ostomy Lifestyle just released their video of the 2011 underwear and swimwear show. These people show that you can still be confident in yourself and your body in spite of having an ostomy. For those of you facing surgery, or feeling down because of your ostomy, hopefully these smiling faces give you the inspiration and hope you need to feel comfortable with your ostomy.

Keep fighting,
~Dennis

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What a difference a day can make

December 11, 2011

There is a quote: “it doesn’t matter how slowly you go as long as you do not stop”…sage words from my daddy on the day I ran my first 5K. Not just any 5K, but a 5K with a 14 obstacle course and a mud pit to run through. Yes, a grueling sequence of obstacles set along a 5K path that I decided to challenge myself to do, while I was in recovery from my ostomy surgery back in September.

When I had surgery back in September, I decided at that time, that I needed to set goals to try to get my life back on track. I was a wreck. Emotional and physical mess. I had to try to find ways to restore myself back to “me,” so to speak. The old “me” never really ran a 5K, but whatever…ha! I wanted to try, and I think it helps too, toward building my self-esteem which was damaged quite a bit. My confidence needed some repair as well. Setting goals and achieving them seemed like the best plan to accomplish this.

The best laid plans

It starts out small, setting goals to walk 10 steps from the hospital bed to the door. Then down the hospital corridor or around the nurses’ station until I was finally able to walk out the door of the hospital to the car to go home. Small victories. When I felt that my recovery was on par, I decided that I would start setting goals further out, ones to work toward. The idea of a 5K run came to mind. Upon researching, I found the Survival Race in Texas being held in December – exactly 3 months post-surgery. My first thought, “where do I sign up?” I figured 3 months would be an acceptable amount of time for recovery.

I bought a pedometer shortly after and started tracking how much walking distance I could put on in a day. Later on, I started shopping for an elliptical machine. Then, I began stretching and trying to condition myself to some level of fitness in order to get through this. I had a few setbacks along the way that started to concern me. I kept getting ill with so many infections, flu, colds, I had an abdominal abscess, and I kept having setbacks. I was worried that I would not be well enough to achieve this goal. But harder yet, only a few short weeks before the challenge, I was injured in a car accident. I was about to give up on the idea of doing this 5K. My body hurt so much, and I couldn’t imagine trying to go through this and make it to the finish line. I began to think that this was too soon after surgery, then having so many setbacks; I should probably bail out and quit.

But slowly, I began to improve. I started walking a course outside my house and kept going until I reached the 5K mark. I would jam to my tunes, and the time flew by. Then, I started to jog and my endurance built up and I felt confident that I could do this. I was just going into it thinking all I have to do is make it to the finish line. Don’t worry about the time, just finish. JUST CROSS THAT FINISH LINE!!

Race Day

The night before the race I was so nervous; I didn’t sleep well. I kept thinking about the day ahead and worrying about the obstacles; I researched all 14 and pinpointed the ones that I knew I could easily do and the ones that would be a bigger challenge for me. I kept thinking all along the way how this race is a metaphor for my life. There are all these obstacles, all these challenges, and I have to figure out how to navigate through them. I am not fortunate enough in life however, to know in advance what obstacles are ahead, but I think you get what I mean.

In this particular event there were tires to run through, a mucky river knee deep, muddy hills to climb, walls to leap, crawling under barbed wire through a pond, crawling through wet and muddy tunnels, climbing over wooden and metal structures, a rope wall I had to get over, a pit of paint balls I had to go through on my tummy, barrels to jump over, and a fire pit to jump across. Many times along the way I thought I wasn’t going to make it. I hurt myself, got afraid that I couldn’t do something, or that I would fall from the top of the rope wall—I sat at the top of the wall contemplating my descent. I got tired, cold, my asthma was making it a challenge to breathe, but at each challenge, I faced it, did it, and overcame it until finally, I came to the mud pit–the most difficult challenge of the entire course. It was a lake bed of pure mud that was waist deep. It felt and smelled like poo-(haha one must admit this really was the perfect metaphor for IBD!)

The mud pit was the hardest to overcome. Here, I struggled the most, I didn’t think I could get through, I lost my shoes and went through it with nothing to protect me, I got stuck and could not move, it was the part that slowed me down the most, and for a split second I stopped, looked up, and thought to myself, “I’m done-I can’t do this anymore.” This was the perfect analogy for fighting IBD. Still, I kept on going, and once I was able to make it out, I was still carrying the weight of 20lbs of mud on me through the rest of the course. Kind of like, how making it past the biggest hurdles, one still carries along residual weight of this illness. It doesn’t completely go away–sad but true. I have an ostomy appliance attached to my abdomen as proof and scars that will never heal.

Champion for a day

Finally after a little over an hour, covered in mud, blood running down my hand, and bruises on my body, I crossed the Finish line. I was never as physically thrilled to finish something in my life as I was to finish this. I.DID.IT…ME! It was my glorious, feel good, moment. I sank to my knees to thank God for carrying me to the finish line.

This race was tough, but then again, life is tough. Some of us learn this the hard way, but this challenge taught me something about life and about myself. I believe that no matter how hard something is, you eventually get through it. Unlike this race that ended in an hour, so many challenges in the path we walk through IBD take years to overcome if at all, but we celebrate small victories, good days, and overcoming the challenges. Sometimes we get to the end of a struggle and feel victorious. I also learned that even if I am afraid of the unknown or afraid of the challenge of what I am facing, if I have enough faith in myself to believe I can make it, I can, and most of all, I learned to not give up. I never gave up-I never quit. Even if it was only for a moment or a day that I could feel high on life for crossing that finish-line, to me, that moment was priceless. It took a long time to capture that feeling-I got to have it, and I earned it.

“Satisfaction lies in the effort, not in the attainment. Full effort is full victory.” ~Mahatma Gandhi

~Nadia

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Using smartphone and iPad apps for inflammatory bowel disease

December 6, 2011

Technology allows us some great tools to help track our symptoms using our smartphone, iPod touch, or iPad. In this video, I demonstrate a downloaded app called GI Monitor, which tracks symptoms, BM’s, meals, and pain/stress levels. You can use the information to show your doctor to give a better idea on your disease allowing the physician to give you better treatment. The beauty of the apps is that they take a lot of guess work out of trying to figure everything out and take off the burden of having to write down every detail.

“We’ve arranged a civilization in which most crucial elements profoundly depend on science and technology.” ~Carl Sagan

~Nadia

Question: How do you keep track of your symptoms?

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Cookin’ With Nadia: Chicken Rice Dish ft. Dennis

November 29, 2011

Dennis visited me in Texas and we cooked this dish:

Ingredients:
Chicken
Rice
Salt
Pepper
Bullion
Celery
Onion

Watch the video to learn how to make this simple dish. A great dish to have when you are not feeling well.

~Nadia

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Jimmy and David, 2011 ostomy underwear and swimwear show models

November 18, 2011

Ostomy Lifestyle has a couple new videos featuring young men with ostomies, Jimmy and David. Both of their stories are very different, but they are both leading successful lives now in spite of their ostomies. The underwear and swimwear show has happened and pictures aren’t up yet, but probably will be available soon at Ostomy Lifestyle.

Keep fighting,
~Dennis


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C3Life Blog: Weekend in Texas

November 10, 2011

This last weekend I was in Dallas, Texas for a working vacation of sorts. My co-host at UCVlog, Nadia, and I periodically meet to make videos, discuss future plans for the website, and have a little fun (if there’s time left in the day). This last year Nadia was extremely busy moving down to Texas, and undergoing two surgeries to make her ostomy permanent, so there was a considerable gap between visits.

Read more

Keep fighting,
~Dennis

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Inspired by others—Kate from Australia

November 5, 2011

Since my recent permanent ostomy surgery, I have been thinking a lot about living the rest of my life as a permanent ostomate and how that will impact all the things that I want to do. Honestly, the way I have been doing for these past 2 months since surgery has made me feel that nothing can hold me back now. I believe that having this ostomy gives me the freedom to do so much more than I thought that I ever could, and it poses no interference to all that I can see myself doing. I am very sensitive and tuned in to so many other people that are on a similar journey and have watched as they, too, have made similar improvements with their health since their ostomy surgery or going through the challenges of this disease. Putting myself out there and sharing my story has given me the rare opportunity to meet others and hear their stories as well.

Many people share their history through their illness, accomplishments, challenges, photos, videos, and through all I am inspired by their tenacity and strength as they persevere. Often, I receive something that inspires me to share with others. There are many such stories that need to be told and this is a great arena to share…this is one such story.

Recently, I met Kate (from Australia) through the United Colon Vlog. Kate does not have inflammatory bowel disease, but she has been challenged for more than a decade with a prolapsed bowel or full thickness rectal prolapse at the age of 18. Although not the same, her symptoms very much mirrored that of a person suffering from IBD. After 5 major surgeries, she now has a temporary ileostomy. She told me recently that she will probably face permanent ileostomy surgery in a couple of years, as there is no quick fix, and her surgeons believe that a reversal will probably be unsuccessful.

Kate has not allowed this to hold her back. Not that long ago, she traveled to Canada from Australia with her husband. During her trip, her husband photographed her in various places showing her ostomy. She sent me a message in my inbox with the photo gallery attached, and with every photo, I just kept getting the goosebumps as I saw her accomplishments in every portrait. My heart connected with her immediately and I kept saying to myself “Oh my gosh, Kate, look at you!!” I actually felt the stinging of tears as I was so proud to see this because for some time now, I have been communicating with her, and I know parts of her journey and how hard this has been for her. To see these photos is so incredibly liberating. As much as she says that I inspire her, she inspires me–so much that I wish to share some of her photos and will be displaying additional photos on the United Colon Vlog fan page on Facebook. Her husband did an amazing photographic depiction to give the feel of strength and remarkable accomplishment for someone who has been through so much.

Kudos to you, Kate! May you continue to inspire. Thank you for having the courage to share these photos and your story and allowing me to show them. And thank you for being my friend. I know this may have been difficult, but your willingness to open yourself up to others will touch the hearts and lives of so many people across the world. It did for me! You rock, Kate!!

Instead of saying, “I am woman hear me roar” we can restate it to say “I am ostomate, watch me soar.”

Much love,
Nadia

Kate at the top of Mt Edith Cavell after hiking for almost 3hrs. Her greatest accomplishment so far.

Kate at the top of Mt Edith Cavell after hiking for almost 3hrs. Her greatest accomplishment so far.

If you have photos to share, proud moments of you overcoming the challenge of your disease, a huge accomplishment, please email me (Nadia@UCVlog.com) or message me on Facebook so that I can share your story with others. We can all inspire one another. Let me tell your story.

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Andrew, 2011 ostomy underwear and swimwear show model

October 24, 2011

A chance of pace today, this video from Ostomy Lifestyle features a man, Andrew, telling his story about his ostomy and why he is participating in the upcoming underwear and swimwear show. He’s done some very interesting things with his life following ostomy surgery.

Keep fighting,
~Dennis

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Teenager Georgia’s Crohn’s disease story

October 21, 2011

14-year-old Georgia explains in these two videos what it’s like living with Crohn’s disease. She’s been through a lot–she once spent 42 days in the hospital! These videos were posted by a third-party health channel on Vimeo, so there’s no way to contact Georgia directly if you have questions for her.

Keep fighting,
~Dennis


Question: What’s the longest you’ve ever been in the hospital? What did you do during that time? Answer this post with your story.

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