I plan on writing many blog posts over the next couple of days recapping my experience from this weekends HealtheVoices15 conference hosted by Janssen Biotech and . In the mean time, I feel like I have to share this AMAZING talk given by Dr. Zubin Damania, also known as . Even calling his talk amazing is a complete understatement.
Dr. Damania is completely changing healthcare and how patients receive healthcare! His work at in Las Vegas is revolutionizing patient - doctor care!
Please take a moment to watch his video below where he talks at . It's very similar to the talk he gave at the conference this weekend. It's 20 minutes long, but I can't stress enough to watch all 20 minutes of it! You won't be disappointed!
As many of you know, I'm the creator of The IBD Round Table Discussion... A monthly podcast that talks about Crohn's Disease and Ulcerative Colitis. The goal of The IBD Round Table Discussion is to bring education and awareness of #IBD to the masses. Regardless if you're a patient, caregiver, or just the general public.. there is something for everyone in our podcasts.
I'm looking to reach my next milestone with my #YouTube channel. If I can reach 500 subscribers, I can "unlock" a bunch of YouTube features that will help me evolve the podcast and bring even more to the show.
If you've watched the show in the past and have enjoyed it, I'd ask that you please subscribe to my YouTube channel. If you've never seen an episode before, please take a minute and watch one of the many shows we've done so far. If you like it, please consider subscribing.
I really appreciate any help you're willing to give! :)
#IBD #InflammatoryBowelDisease #YouTube #IBDAwareness #Crohns #UlcerativeColitis #Colitis #UC
Dr. Higgins talks to us about the latest IBD research that is going on.. New IBD drugs that have just come to market Ozanimod and Mongersen.. Can you have both Crohn’s Disease and Ulcerative Colitis? The 23andMe Study, The GEM Project… Plus much, much more!
To make sure you never miss an episode of The IBD Round Table Discussion you can subscribe using the following links:
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#IBDRoundTableDiscussion #IBD #InflammatoryBowelDisease #Crohns #UlcerativeColitis #UC #Colitis #IBDRoundTable
Find out who the winner of the Best in Show: YouTube Award is by watching this Flipagram http://hubs.ly/y0CHnl0 #HAAwards
A new video by gives us an inside look on some of the issues #ostomates go through on a daily basis. While issues like this can be difficult to deal with and embarrassing depending upon where they happen, Meg gives us some positive thoughts from it:
Even when these leaks happen, I always think of what my life was like before I had an ostomy. It wasn't really a life at all. My ostomy has really given me a lot more than it has taken away. So on the days that I do have leaks, I think about all the things my ostomy has given me. That helps me keep a positive attitude.
#IBD #Crohns #UlcerativeColitis #UC #Colitis #Ostomy #Ostomate #OstomyLeaks #FrontButtYouTuber #InflammatoryBowelDisease
It would seem that the heard our voices and have changed the anti-smoking advertisement, portraying #Ostomies in a negative light. They have now issued a new video that you can see below...
I still believe an apology from the CDC should be made! But I guess this is better than nothing
I'm shocked and appalled that the has yet to issue a retraction and apology for their anti-smoking campaign. Using fear and scare tactics is NOT the way to effect change.. Especially when the fear and scare tactics are completely wrong!
Ostomies SAVE LIVES! They have saved the lives of countless people I know suffering from #IBD ( Inflammatory Bowel Disease ), Colon Cancer, and more.
It's time to do the right thing CDC... Show your support for #Ostomates
Thanks to for putting this together!
#InflammatoryBowelDisease #Ostomy #CDC #OstomiesSaveLives
I remember what it was like when Domenic was at his worst with his #IBD. We were fortunate though. We were near the #1 Pediatric #IBD center in the world. Other people aren't always as fortunate to be surrounded by the biggest and best.
If you have anything that you can give, please consider helping Robynn and Aiden. I've gotten to know Robynn ( Aiden's Mother ) and I understand her plight all too well. There's nothing worse in this world than watching your child suffer and the feeling of absolute helplessness.
I'm excited and honored to announce that Dr. of the will be our special guest this month. Dr. Higgins, a Board Certified #Gastroenterologist and a top #IBD ( Inflammatory Bowel Disease ) researcher, will join us to discuss various topics relating to #Crohns Disease and #UlcerativeColitis .
of JournalingIBD.org, of CrohnsGuy.com, and of Inflamed-and-Untamed.com join me in speaking with Dr. Higgins to bringing you all the latest and greatest information surrounding IBD.
As always, we'll be taking your questions during the show! Here's your chance to ask the TOP IBD researcher some of the questions you've always wanted to know!
Domenic was originally born in Olathe, Kansas. At the time we were living there we were basically alone. All of our family lived on the East Coast.
Domenic started showing symptoms of Crohn's Disease when he was around 2 months old. He started taking less and less formula at each feeding. It got to a point where I was struggling to get even an ounce into him per feeding. His weight gain was almost nonexistent. After a few hospital stays, they contributed it to a milk allergy and we quickly moved him to a soy based formula.
It wasn't long after that we started noticing he was having blood in his stools. At first, the blood was barely noticeable. I was finding small streaks of it on his wipes after cleaning him up. But as the blood continuously increased we found ourselves back at the hospital. Again, the doctors attributed this to an allergy, blaming soy. We quickly moved Domenic to Alimentum and the bloody stools started to decrease.
We started having a few good months where Domenic's symptoms had subsided. The Alimentum definitely gave me a false sense of security that everything was going to be fine. We kept him monitored closely by many doctors but his weight gain and growth were no where near what they should have been. Most of the time he was 10 percent under the growth chart.
Needless to say, my frustration level was rising. I spent the majority of my days taking Domenic from one doctor to another and no one was able to give me answers as to why this was happening. My gut was telling me there was something wrong that all of the current doctors weren't able to figure out. On top of that, I was finding it very hard being in a place where we didn't have the support of family and close friends.
When Domenic was about the age of 1 we made the decision to move back East to the Philadelphia, PA Metro area. We would be very close to family and I knew the doctors in the area were excellent.
At first, we ran into a lot of the same problems we did in Kansas. After many, many doctors, no one was still able to explain why Domenic was not growing in weight or height, having issues with eating, continuing to have blood in his stools, and now starting to express a lot of pain. We were finally referred to a GI Specialist from the Children's Hospital of Philadelphia, Dr. Raman Sreedharan. Domenic was just over the age of 3 at the time. It didn't take Dr. Sreedharan long to know that Domenic was definitely exhibiting GI issues.
At 3.5 years old, Domenic had a series of Endoscopies and Colonoscopies that finally revealed he had Crohn's Disease. We FINALLY were able to assign a reason and a cause to everything Domenic had been going through.
At age 5, Crohn's Disease had caused Perianal Disease and Domenic developed two fistulas in the anal region. Domenic underwent two separate surgeries in order to keep bacteria and infections from setting in, where he has silk stents put in.
Domenic is now 8 years old and is still closely monitored and followed by the doctors at The Children's Hospital of Philadelphia. While he has a team of GI doctors that monitor him, Dr. Sreedharan and Dr. Albenburg are two of his primary GI specialist.
Domenic has been on MANY medications. Given his age, size, and weight not all medications that are currently on the market are available to him.
Pentasa ( also known as Mesalamine ) - Inactive - Mesalamine delayed-release tablets and controlled-release capsules may be used to treat ulcerative colitis that affects any part of the colon ( http://www.ncbi.nlm.nih.gov/pubmedhealth/PMH0000880/ )
Domenic really found little to no benefit from being on Pentasa. He was on it for several years and it did very little to control the disease.
N.G. ( Nasal Gastric ) Tube Feeds - Inactive - Nasogastric intubation is a medical process involving the insertion of a plastic tube (nasogastric tube or NG tube) through the nose, past the throat, and down into the stomach. ( http://en.wikipedia.org/wiki/Nasogastric_intubation )
From the age of 3 and a half to about 5, Domenic was on nightly N.G. Tube Feeds. There was a ton of pros and cons with it. The pros were he was showing positive weight gains and height growth. His stooling was less painful and almost all bloody stools were gone. The cons ranged from emotional and mental stress for him while having to have the tube inserted, along with having to wear the tube as he was in public. Towards the end, Domenic started vomiting a lot in the morning after being disconnected from the nightly feed. Because he was being fed overnight, he rarely wanted to eat breakfast or lunch. This proved to be another problem as he started to solely rely on the nightly feeds and didn't want to intake solid foods anymore.
Flagyl ( also known as Metronidazole ) - Inactive - Metronidazole is an antibiotic, amebicide, and antiprotozoal. It is the drug of choice for first episodes of mild-to-moderate Clostridium difficile infection ( http://en.wikipedia.org/wiki/Metronidazole )
Domenic has been on Flagyl since developing the fistulas caused by the Perianal disease. It has done a great job of keeping the current fistulas from staying infected, along with preventing any new fistulas from forming.
Cippro ( also known as Cefprozil ) - Inactive - Cefprozil is used to treat certain infections caused by bacteria, such as bronchitis and infections of the ears, throat, sinuses, and skin. ( http://www.ncbi.nlm.nih.gov/pubmedhealth/PMH0001032/ )
Remicade ( also known as Infliximab Injection ) - Active - Infliximab injection is in a class of medications called tumor necrosis factor-alpha (TNF-alpha) inhibitors. It works by blocking the action of TNF-alpha, a substance in the body that causes inflammation. ( http://www.ncbi.nlm.nih.gov/pubmedhealth/PMH0000267/ )
Remicade was the first medication that put a BIG dent in helping to control Domenic’s Crohn’s Colitis Disease. It's administered in the hospital every 4 weeks through an infusion.
Methotrexate - Active - Methotrexate is also sometimes used to treat Crohn's disease (condition in which the immune system attacks the lining of the digestive tract, causing pain, diarrhea, weight loss and fever), multiple sclerosis (MS; condition in which the immune system attacks the nerves, causing weakness, numbness, loss of muscle coordination, and problems with vision, speech, and bladder control), and other conditions that develop when the immune system is over-active ( http://www.ncbi.nlm.nih.gov/pubmedhealth/PMH0000547/ )
This is the second time Domenic has been on Methotrexate. Originally he was on it as his primary medication to control Crohn’s Colitis. Unfortunately, it didn’t help prevent the constant flare ups he was having. Domenic now is on it, as a once-a-week subcutaneous injection, to work in conjunction with the monthly infusions of Remicade. Remicade alone isn’t enough to help keep the flare ups / inflammation from occurring, but together with the Methotrexate, its helping to make a difference.
I’ll update this area as his medications change or get updated
How can you help?
Knowledge Is Power - I truly believe that knowledge is power! The more we know, the more we can do to help put an end to this horrible disease. The first thing I hear from a lot of people is.. “What is Crohn’s??” or “What is Colitis??”... Take just a few minutes to read up on what it is, what it does, how many millions of people it effects in this world. Who knows, maybe you will learn something that will empower you to help ease the suffering for someone.
Donate - In the last couple of years I have had the great pleasure of working with some great grassroots IBD foundations and charities. The Crohn’s Journey Foundation, founded by Sarah Choueiry, and The Great Bowel Movement founded by Megan Starshak and Andrea Meyers. Both of these charities do amazing work every day to empower those living with Inflammatory Bowel Disease and to ease their sufferings. If you are able to donate to them, regardless of the amount, you’ll be making a big difference!
How To Contact Me
When it comes to Crohn’s Disease and Ulcerative Colitis and what my son goes through, I’m an open book. If you have any questions, suggestions, or just want to comment, feel free to contact me. I can be reached by the following ways:
E-mail - Frank@cceffect.org
Google+ Profile - http://goo.gl/cpTEr