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The Crohns Colitis Effect
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Father Braves Atlantic Ocean To Raise Funds For #IBD!

He’s a fighter and I took on the Atlantic challenge to highlight the daily challenges faced by people with Crohn’s and colitis. These can be tough conditions to live with, and while I was up against the Atlantic elements for one month, Fergus has a lifetime of Crohn’s challenges ahead of him. We want to help by tracking down the elusive cure.

From one Father of a son who has #Crohns Disease to another, I salute you James Prior! Your bravery, dedication, and love for your son is inspiring and amazing! THANK YOU

#IBD #InflammatoryBowelDisease #Crohns #Colitis #UC #UlcerativeColitis
James Prior, 49, from London, rowed from Gran Canaria to Barbados to raise money for research into a cure for Fergus' Crohn's disease.
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Surgery rates in #IBD  affected by therapy

Resection rates in Crohn’s disease and colectomy in ulcerative colitis remained high, but below some historical data, possibly due to an increase in the use of immunomodulating therapy, according to new 7-year follow-up data.

Could biologics be the reason why surgery rates are down in #Crohns  Disease and #UlcerativeColitis  patients? Could it be that with research and advancements we are able to diagnose #CD  and #UC  better and quicker? 

#IBD   #InflammatoryBowelDisease   #Crohns   #Colitis   #UC   #UlcerativeColitis   #Surgery   #IBDSurgery  
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h.. bb
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Six Health Problems Marijuana Could Treat Better Than Traditional Medicine

But a recent study found marijuana produced significant, steroid-free benefits for Crohn's disease patients with no side effects. The study, admittedly, used a small sample size and called for more research. But in an extensive review of the study, other researchers concluded that the study's findings live up to the historical and scientific expectations normally attached to marijuana as a treatment for IBD.

Here's another article raising the question about #marijuana and it's use as medical treatment for those with chronic illnesses. #IBD ( Inflammatory Bowel Disease ) is one of the chronic illnesses discussed in the article and how it's properties are similar to that of steroids.

#IBD #InflammatoryBowelDisease #Crohns #UC #Colitis #UlcerativeColitis #MedicalMarijuana
Medical marijuana could fill gaps that currently exist in traditional medicine.
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Where do I sign up for a trial? The munchies can't be as bad as when on prednisone.
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Immunotherapy Patch for #Crohns  Disease?

Immunotherapy through the skin might have applications beyond food allergies, with research getting underway for treatment of Crohn's disease.

A new form of delivering immunotherapy for #IBD  ( #Crohns  Disease and #UlcerativeColitis  ) is now being researched. Researchers are hoping to be able to deliver the same T cells regulations as currently being done through infusions and sub-q injections, through a patch via the skin. 

#IBD   #InflammatoryBowelDisease   #Crohns   #Colitis   #UC   #UlcerativeColitis   #Immunotherapy
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#IBD 
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Understanding #Anemia with #IBD!

People who have inflammatory bowel disease (IBD) are at risk for anemia. One reason for this is the poor absorption of vitamins and minerals that can occur because of inflammation or diarrhea. If the intestines can't absorb enough iron, folate, vitamin B12, and other nutrients, the body won't have what it needs to create more red blood cells.

Excellent article by +Amber Tresca on +About.com website explaining how Anemia goes hand and hand with Inflammatory Bowel Disease and that it's not just caused by bleeding.

#IBD #InflammatoryBowelDisease #Crohns #Colitis #UC #UlcerativeColitis #Anemia #Bleeding
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Have them in circles
104,220 people
 
#Crohns Disease hits kids with family root in South Asia

Although Tarren is the only one in the family to have Crohn’s disease, he is the new face of the condition in Canada. Children whose grandparents immigrated from South Asia are three times more likely to develop IBD than the rest of the B.C. population, according to research from Dr. Kevan Jacobson, a gastroenterologist at the University of B.C. and BC Children’s Hospital.

A new study in Canada, the U.S., and Israel is trying to investigate the cause of Crohn's Disease. This study, however, isn't just investigating it from the patient alone, but from siblings and family members too. 

#IBD   #InflammatoryBowelDisease   #Crohns   #UC   #UlcerativeColitis   #Colitis   #Research   #Asia  
A massive international study looking for answers about Crohn’s disease is seeking families affected by the lifelong intestinal illness. Eleven-year-old Tarren Parmar of Burnaby, along with his younger sister Jaya, 9, are among the first 2,800 recruits of an expected 5,000 participants worldwide. Tarren was just six when he was diagnosed and spent months in hospital during his early school years.
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Bowel Disease Can Now Be Diagnosed By Smelling Stools

The results were 76 per cent accurate in a study of 182 stool samples from patients with inflammatory bowel disease and irritable bowel syndrome.

No... The headline isn't a joke and isn't wrong! It's now gotten to the point where we can tell the difference between #IBD and #IBS with smelling of stools! Thankfully, it's a machine doing the smelling and not humans! :)

#IBD #InflammatoryBowelDisease #Crohns #UC #Colitis #UlcerativeColitis #IBS #IrritableBowelSyndrome
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Pregnancy Effects of #IBD  May Vary

One of two major types of IBD, ulcerative colitis, was most strongly linked to serious pregnancy complications, researchers found in a study of nearly 400,000 women.

Interesting article on the effects of pregnancy with Inflammatory Bowel Disease. 

#IBD   #InflammatoryBowelDisease   #Crohns   #Colitis   #UlcerativeColitis   #UC   #Pregnancy  
NEW YORK (Reuters Health) - Some forms of inflammatory bowel disease are a bigger threat to pregnancy than others, suggests a large new U.S. analysis.
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#Crohns Sufferer In Legal Battle Over Her Eggs Being Frozen

A young Crohn's disease sufferer from Kent is taking legal action after being refused funding for her eggs to be frozen before she undergoes chemotherapy treatment.

It's a little hard for me to report on this article as I don't have first hand knowledge of the UK Healthcare System... But it would seem that Artist Rose is asking for her eggs to be frozen before undergoing a bone marrow transplant and chemotherapy as part of her #Crohns therapy. The article leads me to believe that other women, in similar situations have been granted this before and Mrs. Rose is being discriminated against.

#IBD #InflammatoryBowelDisease #Crohns #UC #Colitis #UlcerativeColitis #Chemotherapy #BoneMarrow
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Bone Loss Mystery in #IBD Could Be Solved

In an effort to address the issue of these treatments and their effect on bones, researchers led by a University of Arizona doctor recently discovered two proteins that are related to irritable bowel disorder and bone-loss — a discovery that may lead to an effective supplemental therapy.

Many treatments for #Crohns Disease and #UlcerativeColitis means trading one set of symptoms for another. While Biologics and other medical treatments help to relieve symptoms of #IBD, they can easily bring on a new set of symptoms. Hopefully this research will lead to finding the root cause on why bone loss is occurring in #IBD patients and help put an end to it.

#IBD #InflammatoryBowelDisease #Crohns #Colitis #UC #UlcerativeColitis #Ostomy #JPouch #Boneloss #IBDTreatments
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Any steroid can cause bone loss. Also folic acid can block calcium from being absorbed. Iron calcium and Vitamin D are important to healthy bones and teeth
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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

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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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