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.
Our Story:
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 site will bring about awareness for 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, the 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 9 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. Albenburg is his primary GI specialist.
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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/
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 tubeor NG tube) through the nose, past the throat, and down into the stomach. (http://en.wikipedia.org/wiki/
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/
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/
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/
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/
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