Monday, April 13, 2009

Remicade?


Long term Prednisone treatment is known to produce adrenal insufficiency, high blood pressure, high glucose, osteoporosis, possible psychosis, liver disease, and Cushing syndrome among many other problems. Many people are fed up with the side effects of this and the other common drugs used to treat active flairs of IBD. Now with the advent of Biologics such as Humira and Remicade, the question remains Should I make the switch?

Remicade and other Biologics are a type of protein that recognize, attaches to, and blocks the action of a substance in your body called tumor necrosis factor (TNF). TNF is made by certain blood cells in your body. These drugs will not cure adult Crohn’s disease, pediatric Crohn’s disease, or ulcerative colitis, but blocking TNF with Remicade may reduce the inflammation caused by TNF in your body. It is delivered intraveniously every six weeks. It must be noted that it has been found that Biologics may increase the risk of Lymphoma and serious, life threatening super infections, although as more data is being recieved it seems that the risk is less than originally thought.

Even with the side effects of Remicade and other biologics, Doctors are finding that there are less life threatening complications for those with Crohns disease who make the switch because of its amazing ability to keep IBD in check. It is still being used as a last resort because of the lack of long term studies, but if you feel Biologics may be helpful to you, talk to your doctor.


For those who are interested, this video shows a little bit of the science behind the chronic inflammation of IBD. It speculates on the possibility that bacteria are behind the cause of the disease. As a disclaimer, there is still no conclusive evidence pointing to this being the major cause behind IBD.

I feel it is very important to be an informed patient in order to receive the best treatment possible by your Doctor. Two years ago, my personal physician told me that I finally knew more than he did about Crohn's disease and our partnership in my treatment has kept me out of a flair a lot longer than many.

Need Support?


The Daily Strength is a website that offers numerous support groups for many ailments and hardships. They have a portion of their site devoted specifically to those who have Crohns disease and Ulcerative Colitis.

On this website, people with IBD come together to receive and swap advice, hear treatment experiences, give one another support through new diagnoses, or just to offer open ears as fellow "Crohnies" goes through another flare up. Having someone to talk to, especially when you feel like your the only one in the world that has to deal with the effects of Crohns disease, always makes things a little easier.

CCFA got Facebook!


The Crohns and Colitis Foundation of America finally has Facebook. They have set up a link on their main website that allows users to join the CCFA Facebook page.

CCFA is a non-profit, volunteer-driven organization dedicated to finding the cure for Crohn's disease and ulcerative colitis. They have been around for nearly four decades with over 50,000 supporters world wide. With over 300,000 individuals affected by Crohns and UC in America alone, 50,000 members is not enough. With this new facebook addition, CCFA hopes to bring about more support and information to the milloins of facebook users out there. Come join!

Got Worms?

Are Worms the next big treatment for Crohns disesae? Dr. Weinstock at the University of Pennsylvania Medical School seems to think so. Dr. Weinstock has been studying the effects of pig hook worm on Crohns disease patients and has found a very suprising outcome: It is very effective at putting people INTO remission.

5 out 0f 6 individuals in his study went into remission within 6 weeks of being infected with helminths. Some have even stayed in remission for up to 4 years without relapse or negative side effects after treatment. This obviously needs to still being vigorously studied to rule out any unforseen problems, but thus far it seems like the next big thing in IBD treatment.

Thursday, April 9, 2009



FREQUENTLY ASKED QUESTIONS:
1. What are the symptoms of IBD?

Common Symptoms of IBD include nausea, fatigue, stomach pain, and diarrhea. If blood or puss is present in stools, a doctor should be consulted immediately.

2. How is Inflammatory Bowel Disease Diagnosed?

IBD is diagnosed through multiple methods. Doctors due blood work to test for inflammation, rule out other causes of your symptoms, and for genetic testing to clarify diagnoses. The principle diagnostic tool is an endoscopy. In an endoscopy, doctors insert a camera, called an endoscope, into your Large intestine or down your esophagus to check for inflammation or ulcers. The placement of ulcers and the patterns they exhibit in the walls of your gastrointestinal tract can help a doctor not only diagnose you as having IBD, but can help them classify the disease as either Ulcerative Colitis or Crohns disease.

3. How is IBD treated?

There are many effective treatments used to treat IBD today. The most commonly prescribed medications are the 5-ASA class of drugs used to prolong the time period between flair ups. These are taken for the duration of the disease and are called maintainance drugs. When flair ups of symptoms occur, patients are often given Anti-inflammatory steriods such as Prednisone to quickly reduce the severity of the problems and reduce complications. Other common treatments include the antibiotics Cipro or Flagyl, and most recently the bioligics Humira and Remicade. Adequate rest, exercise, and nutrition also aid in reducing the incidence and severity of flare ups at any given time. Sometimes in sever cases, surgery is required to remove diseased intestine. Approximately 30% of IBD patients require surgery sometimes during the course of their disease.

4. Can I die from Inflammatory Bowel Disease?

IBD is considered a Chronic, meaning life long, illness. Luckily it is not considered a terminal illness. It can, however, make you very ill and requires the care of an experienced specialist called a Gastroenterologist. Presently there are great treatments out there for both Ulcerative Colitis and Crohns disease. These treatements, combined with the knowledge of a competent proffesional, can help decrease the probability of serious complications.

5. Are there alternative therapies if I don't want to take prescriptions?

Many individuals resist the idea of taking prescription medications on many different bases. Medicines prescibed by your doctor should never be stopped and Alternative therapies should never be under taken without first consulting with your physician. Many alternative therapies such as herbs and vitamins have not been sufficiently studied to rule out possible long term side effects. They may end up damaging body systems like your kidneys and liver. This being said, there have been a few alternative therapies that have been adequately studied that are shown to be safe and effective treatments for IBD. Fish oil therapy, Probiotics (such as yogurt), pig hook worm (helminth) therapy and a little known extract called Boswellia Serrata have all been proven in double blind studies to significantly reduce the symptoms of IBD, and to increase the time between flare ups of symptoms.

6. What causes IBD?

The culprite has yet to be found. Scientists have tested many theories ranging from diet, to Bacteria, to environmental factors with no conclusive evidence that it is one or the other. There are many inherited genes that increase an individuals risk for developing this disease. Several of these factors may even work together. Whatever the cause may be, it triggers an uncontrolled immune response. The bodies own immune system works against itself causing chronic inflammation, bleeding, and pain.

7. Who does IBD effect?

Depending on the area of the world you live in, prevelance can be anywhere from 1 in 200 (in canada) to none (in some third world countries). In the United States, approximately 300,000 individuals are affected with the disease. IBD seems to be most common in developed nations in individuals with Jewish ancestry. Women are affected more often then men, with the disease develping most commonly between the ages of 16 and 35.

8. Is there a cure for IBD?
Yes and No. If Ulcerative Colitis becomes severe enough, the colon can be removed which brings with it a full cure. This requires that the patient wear an ostomy bag, where the small bowel is attatched to a hole in the abdomen and the bowels are emptied into a bag. Recently surgeons have been able to perfect the techniques for what is known as a J pouch. In this procedure, the small bowel is formed into a Pseudo-colon, which allows more control over bowel movements and removes the need of a permanant ostomy bag. In Crohns disease, surgery can only stop uncontrolled bleeding and give symptom reprieve for a limited amount of time. More often than not, the disease returns to another part of the intestine within 3 years.

9. Are there any diets that are recommended for those suffering with IBD?

When loose bowels are present, it is best to not consume large quantities of grains or other fiber and to drink plenty of water. This reduces the frequency of bowel movemements and reduces the chance of becoming dehydreated. Some individuals with IBD swear by a diet produced by a renowned microbiologist named Ellaine Gotschalle. The diet and theory behind it is plainly laid out in a book entitled "Breaking the Vicous Cycle." The effectiveness of this diet has yet to be studied academically, and thus is not recommended by many physicians. A multivitamin is often a good choice because of malabsorption of nutrients in the small bowel by those affected with Crohns disease, or frequent diarrhea.

10. How do I know if its Ulcerative Colitis (UC) or Crohns Disease?

The differentiation between UC and crohns is an important one. Crohns is the only IBD category that is treated using Biologics, while UC is the only category that can be cured by surgical removal of diseased tissue. In a colonoscopy, a gastroenterologist can differentiate between the two by looking at the area of disease. Crohns disease can affect anywhere along the gastointestinal tract from the mouth through the colon. UC can only affect the colon. Sometimes, however, crohns only affects the colon and in this instance the depth of affected tissue is indicitive of one or the other. Crohns affects the full thickness of the intestines, while UC only affects the first layer of tissue inside. When its too close to call, recent developments in gene testing can help a doctor know which course of treatement is best to follow.

Monday, January 26, 2009


UCB is once again offering 30 one-time scholarships for up to $10,000 each in 2009. This opportunity extends to participants diagnosed with Crohn’s disease who are seeking an associate’s, undergraduate, or graduate degree, or are enrolled in a trade school educational program. The deadline for application is February 6, 2009.

More information can be found at the Crohns and Me home website.