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The Crohns Colitis Effect
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Did you miss last Thursday's #IBD  Round Table Discussion with special guest Dr. +Peter Higgins? It's now available for viewing on our website.

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:

‪#‎YouTube‬: http://goo.gl/Gf1H1H
‪#‎iTunes‬: http://goo.gl/DGnKXA
‪#‎Stitcher‬: http://goo.gl/tZ3Ybs
Other Podcast Catchers: http://goo.gl/AgKvV8

#IBDRoundTableDiscussion   #IBD   #InflammatoryBowelDisease   #Crohns   #UlcerativeColitis   #UC   #Colitis   #IBDRoundTable  
Dr. Peter Higgins of the University of Michigan IBD Center is our special guest this month. 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!
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CONGRATS +The Front Butt YouTuber for winning Best in Show YouTube #HAAwards  

#IBD  Advocacy is once again front and center in the +WEGO Health  #HAAwards  with Megs win in Best in Show: YouTube. I'm so proud of Meg and all that she is doing to bring awareness around #Crohns  Disease, #UlcerativeColitis , and #Ostomy  
 
This year, there were so many amazing finalists for the Best in Show: YouTube Award. This award is given to a YouTube Health Activist that deserves 5 stars for their efforts in the online health community.

Find out who the winner of the Best in Show: YouTube Award is by watching this Flipagram http://hubs.ly/y0CHnl0 #HAAwards

created using Flipagram app | Download for Free!
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Thank you so much! I'm so proud of all of the IBD/Ostomy advocates out there too! 
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Ugh #Ostomy  Leaks!!!!

A new video by +The Front Butt YouTuber 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  
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Of course +The Front Butt YouTuber :) Thanks for the great advocacy! :) 
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As Human As The Next Guy....

New ‪#‎IBD‬ blog post on our website by +Stephen Dempster. Listening to our bodies and taking much needed downtime to rest isn't easy. As much as we try to be superheroes living with IBD, we are only human!

‪#‎Crohns‬ ‪#‎UlcerativeColitis‬ ‪#‎Downtime‬ ‪#‎Rest‬ ‪#‎ChronicIllness‬ ‪#‎Human‬ ‪#‎InvisibleIllness‬ ‪#‎Ostomy‬ ‪#‎JPouch‬
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It's livable. .I've had two surgeries. ..can't have anymore. .
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Because I Got #Crohns ....

15 year old, +Logan Edward Smith, does a great job of making a parody of Because I Got High by Afroman, and making it about having #Crohns  Disease. Take a minute and check out his video

#IBD   #InflammatoryBowelDisease   #Crohns   #UlcerativeColitis   #UC   #Colitis   #BecauseIGotCrohns  
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Does #Diet  Play A Role In Managing Your #IBD ?

Good morning my #IBDFamily ! I'm curious how many of you consider your diets as a part of your IBD treatment? Do you believe that diet plays any kind of role in managing #Crohns  and #UlcerativeColitis ‬?
37 votes  -  votes visible to Public
Diet plays a MAJOR role in my treatment
51%
Diet plays a minor role in my treatment
30%
Diet plays NO role in my treatment
19%
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Just started Specific Carbohydrate Diet. So far so good. 
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Do you want to understand what "CRP" means on your lab results?

As an #IBD  patient, you are probably getting lab work done on somewhat of a regular basis. Have you ever wondered what #CRP  ( C-Reactive Protein ) means on your results? 

Dr. +Peter Higgins of the +University of Michigan Health System does an amazing job in this short video explaining it all. What I love so much about the #IBDSchool  videos is that Dr. Higgins and his team explains things in a way that anyone / everyone can understand! 

Remember.... Knowledge Is Power!!! The more you know, the better you can manage #IBD  
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Ok
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In their circles
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Have them in circles
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Help Aiden Get The Help He Needs.....

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.
Aiden is my 6yr old son who suffers from Crohns Disease. We recently had the opportunity meet Dr. Remzi from the Cleveland Clinic and he has taken an interest in Aiden's case. For those of you that aren't familiar with Aiden or his diagnosis, here is a brief description.... He starting presenting the with symtpoms at age 1 with diarrhea up to 15 times day, high fevers, vomiting and failure to thrive. His was diagnosed at age 2 with Ulcerative Col...
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Im praying for you aiden
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Join us Thursday, March 19th at 9:00pm Eastern for Episode 14 of The #IBD  Round Table Discussion with special guest Dr. +Peter Higgins 

I'm excited and honored to announce that Dr. +Peter Higgins of the +University of Michigan Health System 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

+Marisa Lauren Troy of JournalingIBD.org, +Ryan Stevens of CrohnsGuy.com, and +Sara Ringer 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! 
This Hangout On Air is hosted by The Crohns Colitis Effect. The live video broadcast will begin soon.
Q&A
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IBD Round Table - Ep 14 - FAQ with Dr. Peter Higgins
Thu, March 19, 9:00 PM
Hangouts On Air - Broadcast for free

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Its interesting to me that you mention bone marrow transplant and how IBD gets better for awhile...I have back pain and searching for health benefits of geletin and bone broth made from beef bones and marrow bone (chicken, etc)  Are there any studies that have been done in regard to the Leaky Gut syndrome where bone broth supposedly strengthens the gut lining to prevent the what should pass from the body from absorbing instead of passing thru the lining  causing an immune response. 
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What #IBD  questions would you liked answered by a #GI ?

I'll have the honor and privilege of interviewing a notable #Gastroenterologist  soon. What questions do you have that you'd like to have answered? Leave a comment below and I'll do my best to have them answered 

#IBD   #IBDQuestions   #InflammatoryBowelDisease   #Crohns   #UlcerativeColitis   #UC   #JPouch   #Ostomy  
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GREAT questions so far!!!! Keep them coming!!! :) 
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Join +23andMe with +Sarah Choueiry of +The Crohn's Journey Foundation this Friday for a Live Hangout!

If you follow news about #IBD  at all, you probably already know that +23andMe has been working with Pfizer on a research study for Inflammatory Bowel Disease. They have been actively trying to get 10,000 IBD patients ( #Crohns  Disease and #UlcerativeColitis  ) to participate in the study. 

This Friday at 12:00pm Pacific, +Sarah Choueiry of +The Crohn's Journey Foundation will host a live Hangout On Air where she'll interview 23andMe Research Director Joyce Tung. 

I HIGHLY suggest that you make some time to watch this event! 
 
Join us this Friday at 12:00 pm PST when we’ll talk with Sarah Choueiry of The Crohn’s Journey Foundation. Sarah will interview 23andMe Research Director Joyce Tung about our Inflammatory Bowel Disease (IBD) research, our partnership with Pfizer and our drive to recruit 10,000 participants with Crohn’s and Colitis. Tune in to find out how you can participate, and ask your questions about the study! 
This Hangout On Air is hosted by 23andMe. The live video broadcast will begin soon.
Q&A
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Live
23andMe Hangout with The Crohn's Journey Foundation
Fri, March 6, 3:00 PM
Hangouts On Air - Broadcast for free

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#FillInTheBlank  Thursday....

"I do ____________ to distract myself from #IBD  "

#Crohns  and #UlcerativeColitis  have a way of being front and center in everything we do! Sometimes, we just need a little something to distract us from it. What are some of the ways you distract yourself from the daily struggles of #InflammatoryBowelDisease  ‬?
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Sleep and read
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Story
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Domenic's Heroic Battle
Introduction

Our Mission:

The Crohn’s Colitis Effect is an organization dedicated to spreading awareness and supporting those with Inflammatory Bowel Disease (IBD) which includes Crohn’s Disease and Ulcerative Colitis. Our mission is to make Inflammatory Bowel Disease a household name through our webcasts The IBD Round Table Discussion, by way of our online support groups, and by helping to support other grassroots IBD organizations and charities.

My name is +Frank Garufi Jr. My son, Domenic Garufi, is 9 years old and has been battling Crohn's Disease since he was born. My hopes is that this page will bring about awareness for Inflammatory Bowel Disease, which includes Crohn's Disease and Ulcerative Colitis,  along with giving others a perspective on what Domenic goes through on a daily basis.


Domenic's Story:

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.

________________

Medications:

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!

The Crohn’s Journey Foundation - http://goo.gl/wn9k58
The Great Bowel Movement - http://goo.gl/86mklQ



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
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