ibdcure.org | IBD | the facts

"I've Had...

8 surgeries for CD myself...and have had CD for over 30 years."

-An anonymous Crohn's survivor from Huntsville, Alabama

"Many people always have the lingering question, "What is..?" "What symptoms..?" How much?" or "How Many?"-- The facts provided are from specific sources and are completely accurate. We should note that much of the information regarding IBD is uncertain, such as what causes IBD. We understand your frustration as to the minimal amount of information out there and research being performed, but that's exactly what has motivated Gideon to push the Campaign just as far as possible.

We created the facts page to help the general public understand just how widespread this condition is not only in America, but worldwide. Not too long ago Gideon got an email from a student in Ghana. He noted that they don't even know what IBD is there...meaning, they just call it "stomach ulcer." So not only is the IBD Stamp Campaign improving education in America, but its effects worldwide are being felt. The facts page will assist the public in also comprehending the severity of the illness. Not all people diagnosed with IBD have it as severe as other people; cases vary greatly. But by no means is IBD a simple illness. The facts provided will explain why.

Introduction to IBD:

Dr. Burrill Crohn founded Crohn's in 1907. He was a Gastroenterologist (GI) a medical student at Mount Sinai Medical Center in New York City. Mount Sinai is currently the leading treatment center in the Northeast United States for people with IBD. Due to his work on Ileitis--which is now known as "Inflammatory Bowel Disease"-- he was frequently questioned by the media when Dwight D. Eisenhower was president of the US and discovered that he had Ileitis. It was not as common to have this condition back then.

Dr. Crohn wrote several books and more then 100 articles on the condition. He lived in till he was 99 and died on July 29, 1983. Because he did so much tremendous work on Ileitis and volunteered his time to discover more about it, the disease was renamed in his honor and is now known as "Crohn's Disease."

What is IBD?

Inflammatory Bowel Disease (IBD) is a chronic digestive condition which is composed of two sub-conditions, Crohn's Disease (CD) and Ulcerative Colitis (UC). The difference between Crohn's and Colitis is that CD is usually located in many parts of the gastrointestinal (GI) tract. Colitis is usually localized in one's colon.

It is believed that IBD is an illness sparked by one's own immune system--also known as an "auto-immune disorder--in its inability to recognize specific, normal proteins entered into the body through blood, bacteria, and food. One's own immune system then "attacks" one's own body by overreacting to those proteins. The immune system then creates great amounts of inflammation throughout one's digestive tract to try and "combat" what usually are normal proteins. Inflammation that goes on for long periods of time due to misdiagnosis or lack of response to medications can be dangerous. Surgery (to remove damaged intestines) unfortunately is not uncommon in the IBD world.

Flare-ups: "Flare-ups"Ñis a term used when the disease is unable to fall into a remission while taking daily medications. Most severe flare-ups in teens and adults will require hospitalizations because of the extreme weight loss involved. Flare-ups usually produce excessive inflammation (blood & scar tissue) in the intestinal tract. The flare-ups are often corrected by medications if diagnosed in a timely manner.

What are IBD Symptoms?

There are many symptoms from IBD. Many of the symptoms work in a "domino-effect" style. i.e.: Lack of appetite leads to chronic weight loss. The symptoms are:

Dangerous inflammation in one's GI tract during times of "flare-ups" (activity). Some symptoms are routine, and normally happen without having to have a flare-up, such as malabsorbtion of nutrients in the intestines. Both of these states (flare-ups and everyday life with IBD) lead to:
- Frequent hospitalizations/medication treatments
- Surgery if the inflammation has caused permanent intestinal damage and cannot be repaired.
- Blood/mucous in stools
- Constipation
- Severe abdominal pain
- Lack of appetite. This is one of the most devastating side-effects of IBD because it usually leads to:
  - Stunted growth in adolescents
  - Extreme weight loss
  - Dangerous malnutrition
  - Frequent fatigue
  - Lethargy
- Malabsorbtion of nutrients in the intestinal tract usually leads to:
  - Stunted growth in adolescents
  - Extreme weight loss
  - Dangerous malnutrition
  - Frequent fatigue
  - Lethargy
- High fevers (during times of flare-ups) are sometimes present.
Chronic ulcers in the GI tract. Apathous ulcers are sometimes located in the mouth and can lead to:
- Stunted growth in adolescents
- Extreme weight loss
- Dangerous malnutrition
- Frequent fatigue
- Lethargy
Joint pains are also seen in IBD patients
Lactose intolerance is seen is many IBD patients. This means that they lack the enzyme in their digestive tract to break down lactose, a disaccharide. Some can tolerate some dairy foods, and others are completely intolerant.

IBD Treatments:

Many of the current treatments involve "immune suppressive" therapies. These drugs suppress the immune system to calm its overreaction to antigens (proteins). More recently, drugs have been marketed to strictly target the inflammation shed by IBD instead of shutting down the entire immune system. There are alternative therapies being used such as: Chinese herbs and strict diets. Most of the treatments available are truly procrastination drugs to try and hold off IBD patients until they find out what causes the immune system to act the way it acts.

Treatments:
- Drugs taken daily to reduce inflammation on a daily basis:
  - Asacol/Pentasa-Possible side effects: Some forms of 5-ASA may cause loose bowel movements in people with active disease Risk of long-term kidney damage (only in people on high doses--above 4000 mg a day)
- Immune-Suppresive Drugs taken to lower the activity of the immune system entirely (older drugs):
  - Six-mercaptopurine (6-MP)-Possible side effects: Allergic reactions, such as fever, skin rash, or joint aches Inflammation of the pancreas (occurs in less than 10 percent of patients) Lowered white blood cell count, which can increase susceptibility to infection Anemia (only in rare cases).
  - Methotrexate: Possible side effects: Mouth ulcers, increased diarrhea, flu-like symptoms, allergic pneumonia (only in rare cases).
- Anti-biotic medications:
  - Flagyl/Cipro- Possible side effects: A metallic taste and "furry" tongue, loss of appetite, mild nausea, discoloration of urine, tingling or numbness in fingers or feet, and women may be more susceptible to vaginal yeast infections.
- Flare-Up Meds (usually used in a state of desperation):
  - Prednisone (steroids)- Side effects: Rounding of the face Acne Increased appetite and weight gain Red marks or blotches on the skin Facial hair Hypertension or severe mood swings Increased blood sugar level, inducing diabetes Weakness or leg cramps (due to lowered potassium levels) Cataract formation or osteoporosis (
  - Remicade-Given by IV in the hospital. No pill form. Side effects: There are reports of serious infections, including sepsis and tuberculosis, that may be life threatening. There are also reports of serious infusion reactions with hives, difficulty breathing, and low blood pressure. In rare cases, people with de-myelinating disease who were treated with Remicade have seen their symptoms intensify. Up to one in four people experienced the following side effects in clinical studies: upper respiratory infections, headache, cough, sinusitis, nausea or mild reactions to the infusion such as rash or itchy skin.

What Causes IBD?

Many theories exist. The follow theories are the "most believed" theories. However, there is no hard-core scientific evidence to support any particular one.

Genetics: Many scientists and physicians feel genetics has much to do with where both Crohn's disease and Colitis .In Gideon's case however, he is the only person in his immediate and distant family to have the condition. Many examples like his (somewhat) disprove this theory.
Mycobacterium Avium Subspecies (MAP): MAP is a bacteria believed to be a possible cause of IBD. MAP has been suspected as a cause of Crohn's for nearly a century. A study conducted in San Diego proved that 66% of patients fell into a long-term remission. The only questionable factor was the other 34% not responding successfully. This is simply why scientist cannot come to one combined conclusion on this theory.
Environmental Factors: Many also believe the lousy environmental conditions are to blame for IBD. The layout of cases across the United States is unique. New Jersey, Gideon's home state, is host to a whopping 30,000 cases of IBD. While many states out in the Midwest hold many fewer cases. The Northeast (on the whole) holds the majority of the United States's cases.
Diet: Many nutritionists believe that there is evidence to suggest that diet plays a dramatic role in IBD. Because the body has trouble recognizing proper proteins from bacteria, blood, and food, bland diets are usually suggested in times of IBD discomfort/symptoms. Strict diets have also claimed to keep IBD in remission to a certain extent, however, strict diets do have the consequence of limited nutritional components. Some authors argue that an Omega-3 deficiency, a popular oil from fish, is to blame. Very little evidence supports this.

The Facts:

The Crohn's and Colitis Foundation of America estimates that over 1,000,000 people in America alone are afflicted with IBD. The Los Angeles Times recently reported that the number people afflicted with Crohn's and Colitis could have increased to up to 750,000 per illness. Thus estimating that the one million number could've increased 50%.
It is estimated that there are approximately 4,000,000+ cases of IBD worldwide.
The Lost Angeles Times recently reported that 55 people are diagnosed with Crohn's everyday in America. Taking into the Crohn's Foundation's statistic of the number of people afflicted with Crohn's and Colitis are equal, an astonishing 110 new people are diagnosed with Crohn's everyday in America.
Men and women are equally afflicted (in numbers).
Medical reports report that adolescents diagnosed with the condition have a 50-70% chance of having at least one surgical within 15 years of diagnosis.
Medical reports also show that IBD is more common in whites than non-whites. It is also very common in Jewish families.
Medical reports also show that height deficits are common in approximately 40% of the cases of Crohn's.
In 1998, a drug by the name of Remicade was FDA approved for the use in Crohn's disease. This was the first drug approved by the FDA for the use in Crohn's in nearly 30 years. {This is pure evidence that there is not enough research being performed}
IBD often goes undiagnosed or misdiagnosed. Many people worldwide are unaware that they are afflicted with the condition because of the lack of awareness amongst the public as well as physicians.
Former President Dwight D. Eisenhower had IBD. He frequently consulted Dr. Burrill B. Crohn, the founder of Crohn's disease. His condition was not highly publicized.
About 20% of people with Crohn's have parents or siblings with some form of IBD.
IBD accounts for approximately 152,000 hospitalizations each year.
The cost of missed work days for IBD patients is estimated to be at least a one billion dollars per year.
Approximately 20 million people in America are afflicted with some type of Inflammatory Bowel Syndrome (IBS) or intestinal complications.
IBD is not only restricted to humans; it's found in cats, dogs, and other animals as well.

Sources:

The Crohn Crohn's and Colitis Foundation of America
The Los Angeles Times
The New York Times
http://www.crohns-support.com
http://www.remicade-crohns.com
Deepak Chopra's: Perfect Digestion
Crohn's Disease in Children, by Jeffrey S. Hyams, MD (Feb. 1996)
Various medical reports

If you have any other facts to tell us about, just drop an email to: thefacts@ibdcure.org. Please include a source with a weblink (if possible).

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