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The Crohns Colitis Effect
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An Unbelievable Recording of a Colonoscopy....

Imagine this... You're going in for a colonoscopy. You're scared! You're not sure what they are going to find. After the procedure, you wake up and listen to everything that was said while you were put under... You hear the entire medical team mocking you! Discussing how they are going to put fake diagnosis's in your chart. What would you do?

Well, this actually happened to one man and he was awarded $500,000 in a malpractice law suite for it.

It's worth listening to the audio! That medical team should be banned from ever being able to do patient care again!
A patient undergoing a colonoscopy pressed "record" on his smartphone before being sedated. What he heard will shock you.
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The Crohns Colitis Effect's profile photoRob B.'s profile photoMatthew Roberts's profile photo
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Rob B.
 
 i've had crohn's for over 20 years and have had multiple colonoscopys.  I could care less what someone says about me.... I feel sorry for the nurse that has to shave me first. think about that! so who's got it worse!?
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#PICC  Lines for #IBD

A friend of mine is currently in the hospital... She's recovering from surgery and is about to get a PICC line put in so she can be fed with #TPN ‬. That got me thinking....

So often IBD is referred to, or made to seem like, just a bathroom disease. But WE ( IBD patients and caregivers )  know it's so much more than that. I wanted to take a minute and write a brief post explaining what a PICC line is, what it's used for, and included a video showing how a PICC line is inserted into the body.

Special thanks to +The Front Butt YouTuber and +Marisa Lauren Troy for the help

#IBD   #InflammatoryBowelDiseaes   #Crohns   #UlcerativeColitis   #UC   #Colitis   #PICC   #TPN   #CentralLine  
What is a PICC line? How does a PICC line get inserted? And how does a PICC line help those with IBD ( Crohn's Disease and Ulcerative Colitis )?
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Conni USA's profile photoJulie Charles's profile photoDawn Pfannenstiel's profile photoMarisa Lauren Troy's profile photo
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I had a PICC line in for antibiotics back in 1993 when I had my Right Foot Fusion because of all the heavy duty antibiotics. They put mine in up inside my arm above my elbow, not below. It only took them about 15 monutes to do it & it was so easy for us to use it. The nurses could do what they needed to very easily.
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What Are Some Potential Complications of #IBD ?

A great article by +Amber Tresca of +About.com. Will these complications happen to you if you have #Crohns  Disease or #UlcerativeColitis ‬? NO! Is it possible for some or all of these complication to happen? Yes!

It's important to know about these complications and to understand the symptoms of them so you'll know what to do if something does present itself. KNOWLEDGE IS POWER!

#IBD   #InflammatoryBowelDisease   #Crohns   #UlcerativeColitis   #UC   #Colitis   #Complications   #IBDComplications  
Intestinal complications of inflammatory bowel disease (IBD) include abscesses, bowel obstruction, fissures, fistulas, perforations, toxic megacolon, and colorectal cancer.
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Julie Feehan's profile photoNic Davies's profile photoAndrea Roselli's profile photoStephen Dempster's profile photo
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And a deflated bank account 
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It's easy for the guilt of #IBD  to consume us....

This is such a GREAT post by +Amber Elder of http://colitisninja.com I can't tell you how many times +Marisa Lauren Troy and I have had this conversation. Frankly, I think it's impossible not to be consumed with guilt when dealing with a chronic illness like #Crohns  and #UlcerativeColitis

I highly suggest giving this a read! 

#IBD   #InflammatoryBowelDisease   #Crohns   #UlcerativeColitis   #UC   #Colitis   #ColitisNinja   #Guilt   #Guilty   #ChronicIllness  
"Sorry guys! I can't tonight." You hit send and your heart drops down somewhere near your navel. Despite the fact that it's the truth, that shadow of guilt looms overhead. It taunts you.  They'll never understand. Th...
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Andrea Roselli's profile photoMarisa Lauren Troy's profile photoStephen Dempster's profile photoWinnie Wingo's profile photo
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Rob B.
 
different strokes for different folks i guess. 
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Weight Problems with #IBD !

New guest blog post on our website... +Stephen Dempster explains how weight is affected by IBD and his own struggles with it. Definitely worth the read!

#IBD   #InflammatoryBowelDisease   #Crohns   #UlcerativeColitis   #UC   #Colitis   #WeightProblemsWithIBD   #Weight   #WeightLoss   #WeightGain  
Weight can be a real problem with IBD. Stephen Dempster talks about how IBD affects weight and his personal struggles with it.
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Swimming With Courage & Crohn's

Last summer, a great friend and awesome #IBD  advocate, +Ryan Stevens swam Lake Erie in order to raise awareness for IBD ( #Crohns Disease and #UlcerativeColitis ). +Janssen Biotech brought a film crew out to capture this spectacular event and to highlight what it means to have IBD. 

I urge you to watch this video and share it with everyone! This video captures the very essence of how IBD impacts everyone along with showing the heroic actions of Ryan! 
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Tri Nutrition's profile photoAndrea Roselli's profile photo
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In their circles
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Have them in circles
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Happy Father's Day!!!!!!

Here's wishing a Happy Father's Day to all the Dads out there! Just like any other major celebration, its usually centered around food and for #IBDers ‬, that can be difficult! +Amber Tresca of +About.com has a great article below on how to minimize the impact that may have on your #IBD ‬.

#HappyFathersDay   #FathersDay   #IBD   #InflammatoryBowelDisease   #Crohns   #UlcerativeColitis   #UC   #Colitis   #Food  
Most people look forward to the warmer weather, but if you have inflammatory bowel disease (IBD), you might actually dread all the parties and get-togethers. Find out how you can manage your IBD at summer barbecues.
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Looks good :)
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Are You Ever Too Old To Have Someone Help You?

Are you ever too old to have someone accompany to you a doctors office? Have someone help you deal with insurance companies or making doctor appointments?

+Marisa Lauren Troy of http://JournalingIBD.org talks about what it's like living behind the scenes with a chronic illness like Inflammatory Bowel Disease ( Crohn's Disease and Ulcerative Colitis ). The harsh reality is that there is so much more to being a patient and caregiver than physically being ill ( or there for the person ). 

#IBD   #InflammatoryBowelDisease   #Crohns   #UlcerativeColitis   #UC   #Colitis   #MedicalAppointments   #MedicalInsurance   #HealthInsurance   #HealthCare   #HealthCareSocialMedia   #HCSM   #MentalHealth   #MHSM  
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#ImproveCareNow   - Helping Pediatric #Crohns  & #UlcerativeColitis  patients

If all the kids in the US with Crohn’s Disease and Ulcerative Colitis were part of the ImproveCareNow collaborative, 10,000 more would be feeling well instead of sick today ~ Dr. Richard Colletti, +ImproveCareNow Director

Institutions that are currently part of the ImproveCareNow collaborative are:

https://improvecarenow.org/about/where-we-serve


Thanks to +Sara Ringer of Inflamed & Untamed - Crohn's/Colitis Support for first tweeting about this.

#IBD   #InflammatoryBowelDisease   #Crohns   #UlcerativeColitis   #Colitis   #UC   #ImproveCareNow   #PediatricIBD   #Pediatric   #PediatricCare   #PediatricHealthCare  
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Having Faith in Your Medical Team

How important is it to you to trust your medical team? Do you think it really and truly impacts your care? 

Marisa gives some thoughts and perspective into this topic, along with talking about her new medical team. 

#IBD   #InflammatoryBowelDisease   #Crohns   #UlcerativeColitis   #UC   #Colitis   #MedicalTeam   #TrustingDoctors  
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World #IBD  Day 2015

World IBD Day is not a time to celebrate... But it is a time to raise awareness and help the general public understand what people with IBD go through. In this new blog post, I talk about what #Crohns and #UlcerativeColitis are and try to give the general public a better understanding of it! 

#WorldIBDDay   #WorldIBDDay2015  
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There's still time to register for our Live Web Chat - Preparing for Procedures & Surgeries! Make sure you register at bit.ly/1GL8xyf  

Come watch, ask questions, and engage with our expert  Surgeons and  specialist plus our amazing patient panel! 
 
LIVE Web Chat - Preparing for Procedures & Surgeries

You MUST Pre-Register Here: > http://bit.ly/1GL8xyf

Join the #IBDSocialCircle  on Friday, May 15th at 8:00pm Eastern as we host our 3rd web chat, Preparing for Procedures and Surgeries! I'll be moderating this web chat with our panelist being +Marisa Lauren Troy of JournalingIBD.org, +Amber Tresca of +About.com, Dr. Megan Costedio, M.D., Colorectal Surgeon for The +Cleveland Clinic, and Dr. Touseef Ali, Gastroenterology for University of Oklahoma / Saint Anthony Hospital.

I guarantee you this web chat will be extremely informative and worth watching! We're even going to take your questions during the show and have our experts answer them! 

REGISTER HERE --> http://bit.ly/1GL8xyf
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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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