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The Next #IBDSocialCircle Twitter Chat
*Dudes and #IBD*‬ - Wed April 27th @ 7pm Eastern

Make sure you mark on your calendar the next IBD Social Circle Twitter chat. Dan Sharp from Dan Sharp IBD, +Vegan Ostomy and Ryan Stevens from CrohnsGuys.com will be hosting this event!

This is going to be a GREAT twitter chat! The wisdom, education, and experience between these three great IBD Advocates is unparalleled!

#IBDSocialCircle #IBDSC #IBDTwitterChat #IBD #InflammatoryBowelDisease #Crohns #UlcerativeColitis #UC #JPouch #Ostomy #TwitterChat #IBDChat
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What is Creeping Fat and What Does It Have To Do With #IBD‬?
A GREAT Article by +Amber Tresca of About IBD/Crohn's Disease

Creeping fat is a phenomenon found in patients with Crohn's disease and ulcerative colitis (two types of inflammatory bowel disease, or IBD) that is still not well understood by the medical community.

I HIGHLY suggest reading this article! Well done Amber!!!

A special type of fat found in people with IBD is increasingly being understood to be part of the inflammatory process. What is this creeping fat?
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IBD Procedures and Surgery Webcast

In May of 2015, I had the honor of hosting an #IBDSocialCircle webcast during #DDW2015‬ called Preparing for Procedures and Surgeries.
The panel included +Amber Tresca of AboutIBD.com, from the Cleveland Clinic - Dr. Megan Castideo, Ryan Stevens of CrohnsGuy.com, Dr. Ali from The University of Oklahoma IBD Center, and +Marisa Lauren Troy of JournalingIBD.org

We talked about a wide range of issues when it comes to #IBD Procedures and Surgeries. The patient panelist gave us a first hand account of what it was like preparing for procedures plus what they went through pre and post operative. Dr. Castideo and Dr. Ali were instrumental in explaining why these procedures were needed, how they are performed, and what patients can expect from them. We even took the live audiences questions and had our panelist answer them.

Click the link below to watch the video

#Crohns #UlcerativeColitis #IBDProcedures #IBDSurgeries #InflammatoryBowelDisease #Ostomy #JPouch #Ileostomy #Colectomy

The IBD Social Circle presents Preparing for Procedures and Surgeries webcast. Learn from IBD patients & GI's how procedures and surgeries are done.
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‪#‎IBD‬ Resources - http://cceffect.org/ibd-resources/

Are you looking for #Crohns Disease and #UlcerativeColitis Resources. We've just updated our IBD Resources page with the latest information... From the best Adult and Pediatric Hospitals to help finding a ‪#‎GI‬, ‪#‎MentalHealth‬ specialist, and more!

#IBD #InflammatoryBowelDisease #IBDResources #Crohns #UlcerativeColitis #UC #JPouch #Ostomy
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The Next #IBDSocialCircle #IBD #TwitterChat
Wednesday March 9th at 12pm Eastern!!!!

You won't want to miss the next #IBDSC Twitter Chat on #Pregnancy, #Birthing, and #Parenting with #IBD. The chat will be featured by +Amber Tresca of About IBD/Crohn's Disease and +Stephanie Hughes of The Stolen Colon: Ostomy & IBD Awareness with health care #GI Dr. Edward Loftus.

If you are not already following Amber, Stephanie, and Dr. Loftus on Twitter, you should go add them now:

Dr. Edward Loftus - https://goo.gl/UmWl37
Amber Tresca - https://goo.gl/iaf11E
Stephanie Hughes - https://goo.gl/2ByFNJ

This is going to be a GREAT Twitter Chat that you WON'T want to miss!!!

#IBD #InflammatoryBowelDisease #IBDTwitterChat #IBDSC #IBDSocialCircle #Crohns #UlcerativeColitis #UC #IBDPregnancy #IBDBirthing #IBDParenting
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CrohnsGuy.com - +Ryan Stevens Blog

Are you an avid reader / subscriber to CrohnsGuy.com? If not, you really should be! The blog is run by Ryan Stevens, fellow #IBD Advocate and all around great guy!

What touches me the most about Ryan and his blog is his writing style. Not only does he speak from a place where anyone suffering from #Crohns Disease or #UlcerativeColitis can relate, but he does it in a very magical way!

Take a minute to check out his blog I'm sure you'll become a fan just like me!

#IBD #InflammatoryBowelDisease #Crohns #UlcerativeColitis #UC #IBDBlog #CrohnsGuy #JPouch #Ostomy
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Rebecca Denmon's profile photo
 
Take it one day at a time. .rest when you need to and delegate things if possible 
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REMINDER Tonight at 7pm Eastern #IBDSocialCircle Twitter Chat!

Tonight at 7pm Eastern, the IBD Social Circle will be holding another Twitter chat, this time on topic of Dudes with #IBD. This will be a GREAT chat hosted by Dan Sharp, +Vegan Ostomy, and Ryan Stevens.

#IBDSC #IBDSocialCircle #IBD #InflammatoryBowelDisease #DudesWithIBD #Crohns #UlcerativeColitis #JPouch #Ostomy #Ileostomy #NoColonStillRollin #MenWithIBD #UC
 
The Next #IBDSocialCircle Twitter Chat
*Dudes and #IBD*‬ - Wed April 27th @ 7pm Eastern

Make sure you mark on your calendar the next IBD Social Circle Twitter chat. Dan Sharp from Dan Sharp IBD, +Vegan Ostomy and Ryan Stevens from CrohnsGuys.com will be hosting this event!

This is going to be a GREAT twitter chat! The wisdom, education, and experience between these three great IBD Advocates is unparalleled!

#IBDSocialCircle #IBDSC #IBDTwitterChat #IBD #InflammatoryBowelDisease #Crohns #UlcerativeColitis #UC #JPouch #Ostomy #TwitterChat #IBDChat
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Cathy Tew's profile photoThe Crohns Colitis Effect's profile photo
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+Cathy Tew​... You'll soon be able to see a recap of it on www.IBDSocialCircle.com 
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Traveling with #IBD and an #Ostomy‬...
New Blog Post on The Crohn's Colitis Effect Website

Almost a year ago, +Marisa Lauren Troy of JournalingIBD.org and I started a new series on The Crohn’s Colitis Effect YouTube channel called The Realities of IBD. One of the videos Marisa created was Traveling with IBD and an Ostomy. Since technically we are in Spring, heading into the Summer, I thought it might be a good idea to revisit this topic. Traveling can be difficult for people who are completely healthy, so you can imagine how much more difficult it can be when you have IBD and an Ostomy.

Check out the blog post and associated video for some great tips on traveling with an ostomy!

#IBD #InflammatoryBowelDisease #Crohns #UlcerativeColitis #UC #Ostomy #JPouch #Traveling #TravelingWithAnOstomy #TravelingWithIBD

Traveling with IBD and an Ostomy can be difficult. Marisa Lauren Troy gives us some tips that helps her in this Realities of IBD video
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The Crohns Colitis Effect's profile photoRebecca Denmon's profile photo
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+The Crohns Colitis Effect I've had an ileostomy for 37 yrs..and other than taking a hit on my immunity, I have the same concerns as any 62 yr. Old woman 
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Pain Scales for #Crohns Disease - New Blog Post!!!!

Have you ever thought that the generic pain scale doesn't really represent #IBD patients too well??!! +Stephen Dempster does and talks about it in his latest guest blog post on our website. What kind of pain scale would you make for IBD??

#IBD #InflammatoryBowelDisease #Crohns #UlcerativeColitis #Pain #PainScale #IBDPain #Jpouch #Ostomy

Did you know there are pain scales for specific illnesses but none for Inflammatory Bowel Disease ( IBD ). What kind of pain scale would you make for IBD?
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Rebecca Denmon's profile photo
 
This scale is obsolete..no one sized pain scale fits all....no numbers..just mild strong or severe. .pain
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STELARA - Phase 3 Clinical Trail Data Released

It looks like #Crohns Disease suffers will have a new weapon in their arsenal for combatting #IBD . Janssen Research & Development has released the data on the Phase 3 clinical trails and they appear to be very impressive.

The study shows that even patients who have previously failed or were intolerant to Anti-TNF-Alpha therapy had great results using STELARA.

You can read more about the study in the link below

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Science Life - Why Haven't We Cured #IBD

This article is almost a year old now but it's still very relevant today. It's important for patients and the general public to understand that IBD is a spectrum disease. It isn't a one size fits all.

I found this paragraph in the article interesting:

Science Life spoke to Rubin recently about what it would mean to “cure” Crohn’s disease and ulcerative colitis, collectively known as inflammatory bowel disease or IBD. He said the key to getting there is to help each patient understand that IBD is really a range of diseases that need a range of specific, personalized treatments to control symptoms to the point that one could begin to think of a cure. What follows is an edited version of that conversation.

I highly suggest reading the article. Too often I see on blogs and support groups that the reason we don't have a cure for IBD is because.. Big Pharma has the cure but is making too much money off of us... or Researchers have the cure but GI's, hospitals, and other medical professionals want to get rich off of us.... This thinking couldn't be FURTHER from the truth! There's NO conspiracy here! Unfortunately, not enough people understand that IBD is a spectrum disease and if fairly unique to each person that has it.

#InflammatoryBowelDisease #CrohnsDisease #UlcerativeColitis #UC #Crohns #IBDCure


A conversation with David Rubin, MD, Section Chief of Gastroenterology, Hepatology and Nutrition, about why it’s hard to define a “cure” for chronic diseases like IBD, and how new…
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Hair Loss in patients with #IBD

Hair loss is just one of the many things that patients with #IBD have to deal with on a routine basis. The following video from Dr. +Peter Higgins and the University of Michigan IBD Team helps explain this

#IBD #InflammatoryBowelDisease #Crohns #UlcerativeColitis #UC #HairLoss #ChronicIllness 
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Story
Tagline
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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