Diagnosing Crohn's Disease - What are the Symtoms (for newbies :-)

I have had quite a few emails and comments regarding symtoms of Crohn's Disease. Here they are:

Signs and symptoms of Crohn's disease can range from mild to severe and may develop gradually or come on suddenly, without warning. They include:

Diarrhea. The inflammation that occurs in Chron's disease causes cells in the affected areas of your intestine to secrete large amounts of water and salt. Because the colon can't completely absorb this excess fluid, you develop diarrhea. Intensified intestinal cramping also can contribute to loose stools. In mild cases, stools may simply be looser or more frequent than usual. But people with severe disease may have dozens of bowel movements a day, affecting both sleep and ordinary activities.

Abdominal pain and cramping. Inflammation and ulceration may cause the walls of portions of your bowel to swell and eventually thicken with scar tissue. This affects the normal movement of intestinal tract contents through your digestive tract and may lead to pain and cramping. Mild Crohn's disease usually causes slight to moderate intestinal discomfort, but in more serious cases, the pain may be severe and occur with nausea and vomiting.
Blood in your stool. Food moving through your digestive tract can cause inflamed tissue to bleed, or your bowel may also bleed on its own. You might notice bright red blood in the toilet bowl or darker blood mixed with your stool. You can also have bleeding you don't see (occult blood). In severe disease, bleeding is often serious and ongoing.

Ulcers. Crohn's disease begins as small, scattered sores on the surface of the intestine. Eventually these sores may become large ulcers that penetrate deep into — and sometimes through — the intestinal walls. You may also have ulcers in your mouth similar to canker sores.
Reduced appetite and weight loss. Abdominal pain and cramping and the inflammatory reaction in the wall of your bowel can affect both your appetite and your ability to digest and absorb food.
Fistula or abscess. Inflammation from Crohn's disease may tunnel through the wall of the bowel into adjacent organs, such as the bladder or vagina, creating an abnormal connection called a fistula. This can also lead to an abscess, a swollen, pus-filled sore. The fistula may also tunnel out through your skin. A common place for this type of fistula is in the area around the anus. When this occurs, it's called perianal fistula.

Other signs and symptoms. People with severe Crohn's disease may experience fever and fatigue as well as problems that occur outside the digestive tract, including arthritis, eye inflammation, skin disorders, and inflammation of the liver or bile ducts. Children with Crohn's disease may have delayed growth or sexual development. The course of Crohn's disease varies greatly. You may have long periods without signs and symptoms, or you may have recurrent episodes of abdominal pain, diarrhea, and sometimes fever or bleeding.

A Funny Perspective on the Colonoscopy

This is from newshound Dave Barry's colonoscopy journal:

.... I called my friend Andy Sable, a gastroenteritis, to make an
appointment for a colonoscopy. A few days later, in his office, Andy
showed me a color diagram of the colon, a lengthy organ that appears
to go all over the place, at one point passing briefly through
Minneapolis Then Andy explained the colonoscopy procedure to me in a
thorough, reassuring and patient manner. I nodded thoughtfully, but I
didn't really hear anything he said, because my brain was shrieking,
quote, 'HE'S GOING TO STICK A TUBE 17,000 FEET UP YOUR BEHIND!'

I left Andy's office with some written instructions, and a
prescription for a product called 'MoviPrep,' which comes in a box
large enough to hold a microwave oven. I will discuss MoviPrep in
detail later; for now suffice it to say that we must never allow it to
fall into the hands of America's enemies.

I spent the next several days productively sitting around being
nervous. Then, on the day before my colonoscopy, I began my
preparation. In accordance with my instructions, I didn't eat any
solid food that day; all I had was chicken broth, which is basically
water, only with less flavor. Then, in the evening, I took the
MoviPrep. You mix two packets of powder together in a one-liter
plastic jug, then you fill it with lukewarm water. (For those
unfamiliar with the metric system, a liter is about 32 gallons.) Then
you have to drink the whole jug. This takes about an hour, because
MoviPrep tastes - and here I am being kind - like a mixture of goat
spit and urinal cleanser, with just a hint of lemon.

The instructions for MoviPrep, clearly written by somebody with a
great sense of humor, state that after you drink it, 'a loose watery
bowel movement may result.' This is kind of like saying that after you
jump off your roof, you may experience contact with the ground.

MoviPrep is a nuclear laxative. I don't want to be too graphic, here,
but: Have you ever seen a space-shuttle launch? This is pretty much
the MoviPrep
experience, with you as the shuttle. There are times when you wish the
commode had a seat belt. You spend several hours pretty much confined
to the bathroom, spurting violently. You eliminate everything. And
then, when you figure you must be totally empty, you have to drink
another liter of MoviPrep, at which point, as far as I can tell, your
bowels travel into the future and star t eliminating food that you
have not even eaten yet.

After an action-packed evening, I finally got to sleep. The next
morning my wife drove me to the clinic. I was very nervous. Not only
was I worried
about the procedure, but I had been experiencing occasional return
bouts of MoviPrep spurtage. I was thinking, 'What if I spurt on Andy?'
How do you
apologize to a friend for something like that? Flowers would not be
enough.

At the clinic I had to sign many forms acknowledging that I understood
and totally agreed with whatever the heck the forms said. Then they
led me to a
room full of other colonoscopy people, where I went inside a little
curtained space and took off my clothes and put on one of those
hospital garments designed by sadist perverts, the kind that, when you
put it on, makes you feel even more naked than when you are actually
naked.

Then a nurse named Eddie put a little needle in a vein in my left
hand. Ordinarily I would have fainted, but Eddie was very good, and I
was already
lying down. Eddie also told me that some people put vodka in their
MoviPrep. At first I was ticked off that I hadn't thought of this, but
then I pondered what would happen if you got yourself too tipsy to
make it to the bathroom, so you were staggering around in full Fire
Hose Mode. You would have no choice but to burn your house.

W hen everything was ready, Eddie wheeled me into the procedure room,
where Andy was waiting with a nurse and an anesthesiologist. I did not
see the 17,000-foot tube, but I knew Andy had it hidden around there
somewhere. I was seriously nervous at this point. Andy had me roll
over on my left side, and the anesthesiologist began hooking something
up to the needle in my hand. There was music playing in the room, and
I realized that the song was 'Dancing Queen' by ABBA I remarked to
Andy that, of all the songs that could be playing during this
particular procedure, 'Dancing Queen' has to be the least appropriate.

'You want me to turn it up?' said Andy, from somewhere behind me. 'Ha
ha,' I said. And then it was time, the moment I had been dreading for
more than a
decade. If you are squeamish, prepare yourself, because I am going to
tell you, in explicit detail, exactly what it was like.

I have no idea. Really. I slept through it. One moment, ABBA was
yelling 'Dancing Queen, Feel the beat of the tambourine,' and the next
moment, I was back in the other room, waking up in a very mellow mood.
Andy was looking down at me and asking me how I felt. I felt
excellent. I felt even more excellent when Andy told me that It was
all over, and that my colon had passed with flying colors. I have
never been prouder of an internal organ.

ABOUT THE WRITER
Dave Barry is a Pulitzer Prize-winning humor columnist for the Miami
Herald.

Stem Cell Transplant for Crohn's Back on the Table for me

Well, I guess me taking place in a stem cell transplant trial is back on the table. I went back to my doctor and am now getting reasy to schedule a sit-down meeting to see if I qualify. Last time I had to get the Humira out of my system which is done. Another update, I have been on 20mg Lexapro for the past month. I don't notice a difference but my wife says I am less of an asshole. Anyone else here on Lexapro?

Previous Post:
So I saw the Dr. Shafran and Patty today. I gotta say these guys (Winter Park, Fl) are the best gasto doctors I have come across in the 13 years I have had Crohn's Disease. Anyways we discussed a wide variety of topics. I need to be Humira free for 3 months before I can start the clinical trial that is Stem Cell Transplant for Crohn's. The trial is actually a 4 stage blood transfusion that I am going to read up on more (and report my findings tonight). It seems pretty low risk, but there is a 1/3 chance I will get a placebo, (what, red kool-aid??) 1/3 chance I get a half transplant (hopefully my right side!), and 1/3 chance I will get a full transplant. I am going for a 3-d Cat Scan next week which will allow them to better see the extend of my disease. As a bridge I am going back on Pentasa/Azulfidine (9 pills a day). I also am going to try Lexapro (10 mg). I have not been myself this past year. I am myself (HAPPY) about 2 hours a week. The rest of the time I am in pain, bummed, tired, stressed and cranky. I also have alot of anxiety issues and fear of death and dying, thought not necessarily dying from Crohn's Disease. Anyways more to come later.

Ahh, I am such a kid, but I Heart Poop Jokes! Work Poop Survival Guide

This is an oldie but goodie, I love this joke about work poop. Work poop jokes are good for so many of us with Crohn's Disease. Humor helps! Have a great memorial day weekend all. I have to go Crop Dust! (see below).

Work Poop Etiquette We've all been there but don't like to admit it. We've all kicked back in our cubicles and suddenly felt something brewing down below. As much as we try to convince ourselves otherwise, the WORK POOP is inevitable. For those who hate pooping at work, the following is a Survival Guide for taking a dump at work.

CROP DUSTING: When farting, you walk really fast around the office so the smell is not in your area and everyone gets a whiff, but doesn't know where it came from. Be careful when you do this. Do not stop until the full fart has been expelled. Walk an extra 30 feet to make sure the smell has left your pants.

FLY BY: This is the act of scouting out a bathroom before pooping. Walk In and check for other poopers. If there are others in the bathroom, leave And come back again. Be careful not the become a FREQUENT FLYER. People may become suspicious if they catch you constantly going to the bathroom.

ESCAPEE: This is a fart that slips out while taking a leak at the urinal Or forcing a poop in a stall. This usually is accompanied by a sudden wave of embarrassment. If you release and ESCAPEE, do not acknowledge it. Pretend it did not happen. If you are standing next to the farter, pretend you did not hear it. No one likes an ESCAPEE. It is uncomfortable for all involved. Making a joke or laughing makes both parties feel uneasy.

JAILBREAK: When forcing a poop, several farts slip out at a machine gun pace. This is usually a side effect of diarrhea or a hangover. If this should happen, DO NOT PANIC. Remain in the stall until everyone has left the bathroom to spare everyone the awkwardness of what just occurred.

COURTESY FLUSH: This is the act of flushing the toilet the instant the Poop hits the water. This reduces the amount of air time the poop has to stink up the bathroom. This can help you avoid being caught doing the WALK OF SHAME.

WALK OF SHAME: This happens when you walk form the stall, to the sink, and to the door after you just stunk up the bathroom. This can be a very uncomfortable moment if someone walks in and busts you. As with farts, it is best to pretend that the smell does not exist. This can be avoided with the use of the COURTESY FLUSH.

SAFE HAVENS: This is a seldom used bathroom somewhere in the building where you can least expect visitors. Try floors that are predominantly of the opposite sex. This will reduce the odds of a pooper of your sex entering the bathroom.

TURD BURGLAR: This is someone who does not realize that you are in the stall and tries to force the door open. This is one of the most shocking and vulnerable moments that can occur when talking a poop at work. If this occurs, remain in the stall until the TURD BURGLAR leaves. This way you will avoid all uncomfortable eye contact.

ASTAIRE: This is a subtle toe‑tap that is used to alert potential TURD BURGLARS that you are occupying a stall. This will remove all doubt that the stall is occupied. If you hear and ASTAIRE, leave the bathroom immediately so the pooper can poop in peace.

WATERMELON: This is a poop that creates a loud splash when hitting the toilet water. This is also an embarrassing incident. If you feel a WATERMELON coming on, create a diversion. See CAMO‑COUGH.

CAMO‑COUGH: This is a phony cough that alerts all new entrants into the bathroom that you are in the stall. This can be used to cover up a WATERMELON, or to alert potential TURD BURGLARS. This can be very Effective when used in conjunction with an ASTAIRE.

HAVANA OMELET: This happens with a case of diarrhea that creates a series of loud splashes in the toilet water. This is often accompanied by an ESCAPEE. Try using a CAMO‑COUGH with an ASTAIRE.

UNCLE TED: This is a bathroom user who seems to linger around forever. This individual spends extended lengths of time in front of the mirror or sitting on the pot. An UNCLE TED makes it difficult to relax while on the crapper. You should always wait to poop when the bathroom is empty. This will benefit you as well as the others in the building.

Crohn's Disease Drugs Stolen - Procrit and Remicade

HORSHAM, Pa., May 15 /PRNewswire/ -- JOM Pharmaceutical Services, Inc. (JOM), a service coordinator that provides delivery services and customer support to Centocor, Inc. and Ortho Biotech, L.P., was notified May 6, 2008, that a transport trailer carrying DOXIL(R) (doxorubicin HCl liposome injection), PROCRIT(R) (epoetin alfa) and REMICADE(R) (infliximab) was stolen while the driver was traveling from a distribution center in Kentucky to a specialty distributor. This incident has been reported to local and federal law enforcement offices, as well as the U.S. Food and Drug Administration; however, the transport trailer and product have not yet been recovered.

To ensure patient safety, Centocor and Ortho Biotech are voluntarily withdrawing products with lot numbers matching those of the stolen product from the market and communicating this action to all authorized distributors and all prescribing physicians, healthcare providers, and patients.

If the stolen product were to be reintroduced into distribution channels, the companies cannot guarantee that products were stored at appropriate temperatures, nor can the companies guarantee the products were not damaged. A voluntary withdrawal of products with lot numbers corresponding to that of the stolen product minimizes the possibility of inadvertent use of stolen product by physicians and, therefore, the overall risk to patients.

On May 7, 2008, JOM discontinued shipment of products with lot numbers matching those of the stolen product. Healthcare providers and patients that did receive product shipped from an authorized distributor on or before this date should consider the product safe for use. Healthcare providers and patients that are concerned about products shipped after this date with the following NDC and lot numbers can return the product by contacting the companies at (888) 626-5660:NDC Description Lot Number Expiration
Date
59676-3100-1 Cartons containing six (6)D091534 07/2010
single dose vials of
PROCRIT(R) (epoetin alfa)
10,000 U/mL
59676-3200-4 Cartons containing four (4) P113612 09/2010
multidose vials of
PROCRIT(R) (epoetin alfa)
20,000 U/mL
59676-3400-1 Cartons containing four (4) P106803 06/2010
single dose vials of
PROCRIT(R) (epoetin alfa)
40,000 U/mL
17314-9600-1 Cartons containing 1 0717124 03/2009
DOXIL(R) (doxorubicin HCl
liposome injection) 20mg in
10mL (2 mg/mL) single use vial.
17314-9600-2 DOXIL(R) (doxorubicin HCl 0715423 02/2009
liposome injection) 50mg in
25mL (2mg/mL) single use vial
57894-0300-1 Cartons containing one (1)8AM26021P1 01/2011
vial of REMICADE(R)
(infliximab) 100mg
57894-0300-1 Cartons containing one (1)8BK35014P1 02/2011
vial of REMICADE(R)
(infliximab) 100mg

No other lot numbers of product are impacted by this incident. All three of these products have tamper-evident features that can be used to authenticate the package. Healthcare professionals and patients who have concerns about any product they possess may contact the number below for assistance with the identification of these features.

The amount of stolen and withdrawn product represents a very small proportion of the total product within the distribution channel; therefore the companies do not anticipate a disruption in product availability for patients.

JOM, Centocor, and Ortho Biotech will continue to work closely with healthcare providers and authorized distribution partners to identify and isolate product with lot numbers corresponding to those of the stolen product, and ask that anyone report any questionable activities to the appropriate authorities. Healthcare professionals, distributors or patients are asked to direct questions related to this voluntary withdrawal to the companies by calling (888) 626-5660.
Please see Important Safety Information for REMICADE(R) (infliximab), PROCRIT(R) (epoetin alfa), and DOXIL(R) (doxorubicin HCl liposome injection) at their respective websites.
About JOM Pharmaceutical Services, Inc.

JOM Pharmaceutical Services, Inc. is a service provider that is dedicated to providing safe and on-time delivery of pharmaceutical products for Ortho Biotech, L.P., Centocor, Inc., and other U.S. pharmaceutical companies.

About Ortho Biotech, L.P.
Ortho Biotech Products, L.P. is a leading biopharmaceutical company devoted to helping improve the lives of patients with cancer and with anemia due to multiple causes, including chronic kidney disease. Since it was founded in 1990, Ortho Biotech and its worldwide affiliates have earned a global reputation for researching, manufacturing and marketing innovative products that enhance patients' health. Located in Bridgewater, N.J., Ortho Biotech is an established market leader in Epoetin alfa therapy for anemia management. The company also markets treatments for recurrent ovarian cancer, rejection of transplanted organs and other serious illnesses. For more information, visit www.orthobiotech.com.

About Centocor, Inc.
Centocor is harnessing the power of world-leading research and biomanufacturing to deliver innovative biomedicines that transform patients' lives. Centocor has already brought innovation to the treatment of Crohn's disease, rheumatoid arthritis, ankylosing spondylitis, psoriatic arthritis, ulcerative colitis, pediatric Crohn's disease and psoriasis. The world leader in monoclonal antibody production and technology, Centocor has brought critical biologic therapies to patients suffering from debilitating immune disorders.

Crohn's Disease Patients Should Limit Their Exposure to Radiation!

Specialist centres must take steps to reduce the amount of radiation people with Crohn's disease are exposed to from diagnostic imaging, radiologists have urged [1]. Patients with Crohn's disease may be particularly vulnerable to radiation owing to their young age at presentation and an elevated risk of some intestinal malignancies such as small bowel lymphoma.

Researchers estimated the cumulative effective dose (CED) of diagnostic radiation of 354 patients with Crohn’s disease treated at a tertiary centre.They found that 55 patients, 15.5 per cent, had a 'high' CED – defined as greater than 75mSv.Less than six imaging studies were performed per patient over the first five years of the 15-year study. During this period the mean CED was 7.9mSv, with CT accounting for 46.3 per cent of radiation exposure.During the last five years, these figures had increased to almost seven images per patient and a mean CED of 25.1mSv. CT accounted for 84.7 per cent of radiation exposure at this time.

The likelihood of having a high CED was increased by an earlier diagnosis, upper gastrointestinal tract disease, the use intravenous steroids or infliximab, and multiple surgical procedures.The authors said: "Strategies to reduce the effective dose of radiation incurred by patients undergoing CT imaging can be employed without sacrificing image quality and should be considered for all patients, particularly those who are likely to require multiple examinations."

Crohn's Flare Up Again

Man, every time I feel like I just might be getting ahead I seem to flare up. I hate to say it and I know it will disappoint everyone from Dr. Shafran to my wifey but I suck at taking my meds lately. I feel like with the Humira I was doing well and I want to go back on it. But I was having an allergic reaction to Humira. I bring it on myself and I know it, but I am having pain and way too many urgent "movements"! I need to be better about my Pentasa! Ok, short but had to Vent. Keep your heads up guys and gals!

Cimzia Approved to Treat Crohn's Disease - Another New Crohn's Drug

The US Food and Drug Administration has approved a new drug for sufferers of Crohn's disease. Certolizumab pegol (Cimzia) received approval for use in adults with moderate to severe Crohn's disease who have not responded to conventional therapies. This product was approved with a Medication Guide."Crohn's is a debilitating disease that disrupts the quality of life for its sufferers," said Julie Beitz, MD, Director, Office of Drug Evaluation III, Center for Drug Evaluation and Research, FDA, Rockville, Maryland. "This drug works to reduce the signs and symptoms of Crohn's, but it also carries risks that will require patients on it to be closely monitored by their physicians or other healthcare professionals."Patients treated with certolizumab will receive an injection every 2 weeks for the first 3 injections. Once benefit has been established, certolizumab should be given once every 4 weeks.The most common side effects of certolizumab are headache, upper respiratory infections, abdominal pain, injection-site reactions, and nausea.Patients taking certolizumab are at increased risk for serious adverse effects, including serious infections that can lead to hospitalisation or death. Because certolizumab affects the immune system, it can lower the body's ability to fight infections, such as tuberculosis and other opportunistic infections. Certolizumab is a tumour necrosis factor inhibitor and may cause lymphomas and other malignancies. Although an increased risk of tumours was not noted in studies of certolizumab, the modest size and relatively short duration of the controlled studies prevent any firm conclusion. Postmarketing studies and clinical trials will be required to obtain long-term safety data.Patients taking certolizumab should be educated about how to identify an infection and should be instructed to contact their healthcare professional at the first sign of infection. In cases of serious infections, the drug should be discontinued immediately.SOURCE: US Food and Drug Administration

Living with Crohn's Disease - Crohn's Blog

Hey guys, have had a recent upswing in traffic here at the living with crohn's disease blog (livingwithcrohnsdisease.blogspot.com) and just wanted to welcome the new visitors. Feel free to comment or share your stories and advice about living with crohn's disease. Have a great weekend.

Also, have seen an increase in traffic in those looking for basic Crohn's Disease information and am hearing the question "What is Crohn's Disease?" Quick refresher for those folks:
An estimated 500,000 Americans have Crohn's disease, an inflammatory bowel disease (IBD) that causes chronic inflammation of the intestinal tract. Like ulcerative colitis, another common IBD, Crohn's disease can be both painful and debilitating and sometimes may lead to life-threatening complications.In my case, the disease is centralized near my terminal ilieum (near the colon). There's no known medical cure for Crohn's disease. However, therapies are available that may greatly reduce the signs and symptoms of Crohn's disease and even bring about a long-term remission. (When healthly I take about 16 pills a day, when in a flare up, I lose count.)

Pearl Jam Guitarist - Mike McCready New Crohn's Disease Benefit Concert

The Pearl Jam benefit concert will be held Thursday, July 20th at 8 p.m. at Portland's Arlene Schnitzer Concert Hall.

In 2002, Pearl Jam guitarist, Mike McCready made public his 20-year battle with Crohn's disease and ulcerative colitis and has since been committed to raising awareness about the disease, which can cause abdominal pain, fever and weight loss that can disrupt peoples' lives.The benefit concert will take this subject, typically thought to be too delicate to discuss in public, out of the shadows and into the spotlight. McCready has been a spokesperson for the NW Chapter of CCFA and is also featured in a radio Public Service Announcement (PSA) released in January for the organization. The concert will benefit CCFA's search for a cure."Having struggled with Crohn's disease for more than 20 years and experienced first hand difficulties in getting a diagnosis and treatment, I want to help others learn about the disease, how it is affecting them and how to find ways to cope," said McCready.

Approximately 500,000 people in the U.S. have CD. However, people with CD are reticent to talk about their symptoms to healthcare providers, and therefore, often suffer for many years without a diagnosis or treatment.The consequence of not receiving medical care can be progression of the disease leading to surgical removal of affected parts of the digestive system. Although there is no cure for the disease, patients can currently get treatments to reduce symptoms and guidance on how to manage them in their daily lives.Those suffering from severe CD even go so far as to "bathroom map" -- scouting bathrooms in advance of basic outings to the grocery store, mall, or social activities because they never know when a severe attack will strike. This is not always easy when working or trying to lead a normal life. People report that CD has affected their emotional well-being and disrupted their educational pursuits, jobs and personal lives.The Pearl Jam benefit concert will be held Thursday, July 20th at 8 p.m. at Portland's Arlene Schnitzer Concert Hall. Comedian David Cross and other special guests will be on hand for an evening of comedy and music to support CCFA. Tickets are available at all Ticketmaster outlets, online at http://www.ccfa.org/, or by phone at 503-224-4400.

Other Famous People, Celebrities and Athletes with Crohn's:
Mike McCready, Pearl Jam Guitarist
Anastacia Kirkland, singer
Theo Fleury – NHL
Shane Corson– NHL
David Garrard - NFL
Shannon Doherty, actress
Dwight Eisenhower
Marvin Bush, Dubya's brother
George "the animal" Steele, legendary wrestler

Stop Eating Fish Oil! Omega-3 Fatty Acids Don't Help Prevent Crohn's Relapse

April 8, 2008 - Taking omega-3 fatty acids can be helpful for many things, but maybe not for preventing a relapse of Crohn's disease.

Two related studies show that omega-3s are not effective in preventing inflammation associated with Crohn's disease.

Crohn's disease is an inflammatory bowel disease that can affect anywhere along the digestive tract. With Crohn's, a patient may experience periods of remission and recurrence.

Researchers looked at whether high doses of omega-3s worked as maintenance therapy in patients with Crohn's disease in remission. A total of 738 people participated in two studies. No significant differences were observed between the two treatment groups in either trial.

In one study, 363 participants were assigned randomly to take either a daily omega-3 supplement or a placebo for 52 weeks. In the second study, 375 participants took the pills for 58 weeks.

Researchers say the results in the first and second study were similar. Here are some of the findings:

In the first study:

• 54 patients treated with omega-3s had a relapse.
• 62 patients who received a placebo relapsed.

There was no statistically significant difference in rate of relapse between the treatment and placebo groups.

In the second study:

• 84 patients who took an omega-3 gelatin capsule had a relapse.
• 94 patients who received a placebo had a relapse.

There was no statistically significant difference in rate of relapse between the treatment and placebo groups.

New Genetic Marker for Crohn's Disease - Living with Crohn's Disease Research

FRIDAY, April 4 (HealthDay News) -- Researchers have identified new genetic markers for Crohn's disease and ulcerative colitis in a study they say provides further evidence that people of Ashkenazi Jewish descent are more likely to develop the conditions.
Up to 30 percent of people in the United States with inflammatory bowel disease (IBD) have a family history of the condition, and about 25 percent of those families have histories of both Crohn's and ulcerative colitis, according to background information in this multi-center American and Canadian study. People of Ashkenazi Jewish (eastern European) descent are at least twice as likely to develop a form of IBD and are more likely to have a family history of IBD.
Crohn's is most frequently characterized by inflammation of the final section of the small bowel and parts of the colon, while ulcerative colitis involves inflammation of the internal lining of the rectum and colon.
In this study, researchers looked for DNA variations called single nucleotide polymorphisms (SNPs) in 993 families (244 of whom were Ashkenazi Jews) with Crohn's and ulcerative colitis.
Among those of Ashkenazi Jewish descent, the researchers found evidence of genetic markers for familial Crohn's disease on previously identified areas of chromosomes 1 and 3. They also pinpointed a previously unidentified region of chromosome 13 in both Jewish and non-Jewish families with Crohn's.
The researchers also identified areas on chromosomes 2 and 19 that may be related to ulcerative colitis in both groups.
The findings were published in the March issue of Genes and Immunity.
Until now, no gene regions implicated in IBD were specific to Ashkenazi Jews, and there was no genetic evidence to explain why they were twice as likely to develop the disorder, said study senor author Dr. Steven R. Brant, a gastroenterologist at Johns Hopkins.
"This increased risk for some Jewish people makes our study and results especially significant, since this is the first sample size of Jewish families, 244, that was large enough to identify novel gene regions for familial predisposition in this ethnic group," Brant said in a prepared statement.

Another Colonoscopy Monday and Colonoscopy Jokes

I need a good plan to suprise my doctor Friday...any suggestions? Anyways, here are some funny colonoscopy jokes below (i have printed them before I know)

A physician claims these are actual comments from his patients made while he was performing colonoscopies:
1. "Take it easy, Doc, you're boldly going where no man has gone before."
2. "Find Amelia Earhart yet?"
3. "Can you hear me NOW?"
4. "Oh boy, that was sphincterrific!"
5. "Are we there yet? Are we there yet? Are we there yet?"
6. "You know, in Arkansas, we're now legally married."
7. "Any sign of the trapped miners, Chief?"
8. "You put your left hand in, you take your left hand out. You do the Hokey Pokey ..."
9. "Hey! Now I know how a Muppet feels!"
10."If your hand doesn't fit, you must acquit!"
11. "Hey, Doc, let me know if you find my dignity."
12. "You used to be an executive at Enron, didn't you?"
13. "Could you write me a note for my wife, saying that my head is not, in fact, up there?"

Gotta love a good "colonoscopy joke". In fact, I love cononoscopy jokes so share em if you got em! Tell your colonoscopy joke bt entering a comment.

Phenoemnal Article on Autoimmune Disease and Crohn's

Excerpted from The Autoimmune Epidemic: Bodies Gone Haywire in a World Out of Balance--and the Cutting-Edge Science that Promises Hope (Touchstone/Simon & Schuster). To read the entire article, check here.

Most of us, at some juncture in our lives, have played out in our minds how devastating it would be to have our doctor hand down a cancer diagnosis or to warn us that we are at risk for a heart attack or stroke. Magazine articles, television dramas, and news headlines all bring such images home.

But consider an equally devastating health crisis scenario, one that you rarely hear spoken about openly, one that receives almost no media attention.
Imagine the slow, creeping escalation of seemingly amorphous symptoms: a tingling in the arms and fingers, the sudden appearance of a speckled rash across the face, the strange muscle weakness in the legs when climbing stairs, the fiery joints that emerge out of nowhere -- any and all of which can signal the onset of a wide range of life-altering and often debilitating autoimmune diseases.

Imagine, if you can: the tingling foot and ankle that turns out to be the beginning of the slow paralysis of multiple sclerosis. Four hundred thousand patients. Excruciating joint pain and inflammation, skin rashes, and never-ending flu-like symptoms that lead to the diagnosis of lupus. One and a half million more. Relentless bouts of vertigo -- the hallmark of Ménière's. Seven out of every one thousand Americans. Severe abdominal pain, bleeding rectal fissures, uncontrollable diarrhea, and chronic intestinal inflammation that define Crohn's disease and inflammatory bowel disease. More than 1 million Americans.

More than 2 million patients. Dry mouth so persistent eight glasses of water a day won't soothe the parched throat and tongue and the mysterious swallowing difficulties that are the first signs of Sjögren's. Four million Americans. And, with almost every autoimmune disease, intolerable, life-altering bouts of exhaustion. If fatigue were a sound made manifest by the 23.5 million people with autoimmune disease in America, the roar across this country would be more deafening than that of the return of the seventeen-year locusts.

And yet, despite the prevalence of autoimmune disease, surveys show that more than 90 percent of people cannot summon the name of a single autoimmune disease when asked to name one specifically.

Think of it -- other than walkathons for multiple sclerosis, how many fundraising walks or lapel ribbons have you seen for autoimmune disease in general? Nearly 24 million Americans are suffering from an autoimmune illness, yet nine out of ten Americans cannot name a single one of these diseases. It boggles the mind.

Each of these nearly 100 autoimmune diseases derails lives. Taken collectively, these diseases, which also include type 1 diabetes, Graves' disease, vasculitis, myasthenia gravis, connective tissue diseases, autoimmune Addison's disease, vitiligo, rheumatoid arthritis, hemolytic anemia, celiac disease, and scleroderma are now the Number Two cause of chronic illness in America and the third leading cause of Social Security disability behind heart disease and cancer. (Acquired immune deficiency syndrome, or AIDS, by contrast, is not an autoimmune disease; in fact, it is entirely different. In AIDS a virus attacks the immune system and destroys it, whereas in autoimmune disease, the immune system leads the attack, mistaking the body's tissue for an invader and turning on the body itself.)

Autoimmune diseases are the eighth leading cause of death among women, shortening the average patient's lifespan by fifteen years. Not surprisingly, the economic burden is staggering: autoimmune diseases represent a yearly health-care burden of more than $120 billion, compared to the yearly health-care burden of $70 billion for direct medical costs for cancer.
To underscore these numbers, consider: while 2.2 million women are living with breast cancer and 7.2 million women have coronary disease, an estimated 9.8 million women are afflicted with one of the seven more common autoimmune diseases: lupus, scleroderma, rheumatoid arthritis, multiple sclerosis, inflammatory bowel disease, Chron's Disease, Sjögren's, and type 1 diabetes. All of these can lead to potentially fatal complications.

Or slice these statistics another way: while one in 69 women below the age of fifty will be diagnosed with breast cancer, according to estimates, as many as one in nine women of childbearing years will be diagnosed with an autoimmune illness, which strike three times as many women as men -- and most often strike patients in their prime. According to the National Institutes of Health, autoimmune disease affects far more patients than the 9 million Americans who have cancer and the 16 million with coronary disease.

Anal Crohn's, Candles, Suppositories (Canasa) and a Poop Joke

Yeah so I guess now I have "anal Crohn's" in the form of a potential fistula. I guess that explains why I walk around with paper towels folded up between my ass cheeks and have such urgency issues. Anyways, now crohn's has given me the luxury of an excuse to shove my own fingers up my ass. So after a Corona or two the other night, I laid on the couch and lit some candles (yes, literally...I am such a romantic). After the mood was set I got the astroglide out of Amy's night stand and crammed a Canasa rectal suppository up my ass. How hot is that!? So I guess the Canasa is pretty much like a Pentasa or Asacol but it just goes up the poop chute.

Gross I know, but makes for good laughs as I have in typical fashion told this story to everyone. Gotta love Crohn's humor and poop jokes. Always a good time. So I guess this is a good time for a poop joke:

At the start of English class, the teacher asked the students to use the word, definitely, in a sentence.

Little Timmy raised his hand. The teacher pointed and said, “Yes, Timmy, can you use the word definitely in a sentence?”

Little Timmy stood and said, “The grass is definitely green.”
The teacher shook her head and replied, “No Timmy, sometimes the sun is so hot, it browns the grass, so the grass is not definitely green.”

Little Susie raised her hand and said, “The sky is definitely blue.”

“No Susie, sometimes there are clouds in the sky. So the sky is not definitely blue,” the teacher stated.

Little Johnny raised his hand.

“Yes, Johnny, can you use the word definitely in a sentence?”

“Um, well … when you break wind, does it have chunks in it?” Johnny asked as he squirmed in his seat.
“No,” the teacher replied.

Little Johnny stood and said, “Then may I be excused, because I have definitely just shit on myself.”

Another Day in the Life of Crohn;s

So I saw the Dr. Shafran and Patty today. I gotta say these guys (Winter Park, Fl) are the best gasto doctors I have come across in the 13 years I have had Crohn's Disease. Anyways we discussed a wide variety of topics. I need to be Humira free for 3 months before I can start the clinical trial that is Stem Cell Transplant for Crohn's. The trial is actually a 4 stage blood transfusion that I am going to read up on more (and report my findings tonight). It seems pretty low risk, but there is a 1/3 chance I will get a placebo, (what, red kool-aid??) 1/3 chance I get a half transplant (hopefully my right side!), and 1/3 chance I will get a full transplant. I am going for a 3-d Cat Scan next week which will allow them to better see the extend of my disease. As a bridge I am going back on Pentasa/Azulfidine (9 pills a day). I also am going to try Lexapro (10 mg). I have not been myself this past year. I am myself (HAPPY) about 2 hours a week. The rest of the time I am in pain, bummed, tired, stressed and cranky. I also have alot of anxiety issues and fear of death and dying, thought not necessarily dying from Crohn's Disease. Anyways more to come later.

Thanks for the support guys.

Stem Cell Transplant or Surgery? Meet with Dr. Shafran Tomorrow

to find out...I ran into Ira and Anita on the street today at a St. Patty's Day Parade in Winter Park (a bit early I know). Anyways after reading up on the whole stem cell and Crohn's thing I am nervous as hell for this appointment. However with nothing really working medication wise (Pentasa/6MP, Asacol, Remicade, Humira, etc), I am down to either letting it go until a major flare up, Surgery or this whole Stem Cell Transplant. I will post after I meet with Dr. Shafran and his staff.

Stem Cell transplant Crohn's Disease - Stem Cell Research and Crohn's Articles

Long story short. I am now having what I think to be an allergic reaction to Humira. (I have had them to Remicade in the past). My doctor wants me to stop treatment and come in next week to discuss the possibility of a stem-cell transplant. I profess complete ignorance and in fact know nothing about it. Below are some articles that I have not even had time to read yet. In scanning them apparently they can cure Crohn's, something I did not understand to be possible. I meet with Dr. Shafran and his staff a week from Monday to discuss this. I plan on doing a whole lot of research in the meantime. It looks like it has only been done a few times (see below). Grasping at straws here, but does anyone have any insight?
-Scott

Stem Cell Research and Crohn's
Roanoke Teen to Head to Chicago in Pursuit of Crohn's Disease Cure (from July 2003)
An insurance company, hospital and federal regulators have approved a Roanoke youngster with a severe intestinal disease to have an experimental stem-cell transplant that could cure or kill him.
Thirteen-year-old Jordan Fifer heads to Children's Memorial Hospital in Chicago later this month.
People ask him if he is scared or afraid of dying. He tells them he's not.
"I don't know why I am not scared. I'm just not," he said. "I'm incredibly eager. And I just know when I come back, I will be able to do things that I haven't been able to do for so long and that means a lot to me."
Like eat a piece of pizza and have the energy to play soccer.
Jordan, who this fall will be a freshman at Patrick Henry High School and the Roanoke Valley Governor's School for Science and Technology, was stricken with Crohn's disease at about age 10. With Crohn's, the digestive system comes under attack by the immune system. When the disease is active, it causes stomach aches, diarrhea, rectal bleeding, weight loss, fatigue and fever.
About a million Americans have Crohn's or a similar condition, ulcerative colitis, according to the Crohn's and Colitis Foundation of America. There is no known cure.
Jordan had tried without success to get relief through a variety of prescription drugs and other traditional therapies. His mother, Hope Trachtenberg-Fifer, learned about a Chicago medical team that has treated about a dozen Crohn's patients, adults and children, with a transplant of blood stem cells.
Jordan's health insurer - he's insured through his dad Gary's health plan - this week approved paying part of the cost for Jordan to have a transplant. He will be the youngest person treated so far.
Blood stem cells are the building blocks of blood inside the bones. Already, blood stem cell transplants correct disorders of the blood and disease-fighting immune system and repair damage to such systems caused by some cancer treatments, such as chemotherapy.
But until the transplant has been proved to address Crohn's, it is classified by the federal government as an experimental treatment. The U.S. Food and Drug Administration supports the ongoing experiment in which Jordan will participate and has approved methods to be used.
So within weeks, Jordan will leave for a three- to four-month stay in the Chicago area. He will be hospitalized only part of that time but must remain near the hospital for follow-up care. His mother will stay with him at a home for transplant patients and their families, from which Jordan and his Mom may move to an apartment.
Here's how the procedure works: Medication will draw stem cells from Jordan's bone marrow into his bloodstream for collection (he'll be his own stem-cell donor). High-dose chemotherapy will destroy his immune system. Then doctors will reintroduce the stem cells to his bloodstream. If all goes well, the cells will create a new immune system without the malfunction that afflicts Jordan today.
The procedure carries a small risk of death. Jordan's immune system may not regenerate, placing his body at serious risk of infection. He also could have an allergic reaction.
The Crohn's and Colitis Foundation of America, dedicated to education, patient support and fund raising for research, sounded a note of caution. The organization released a statement in which a member of its scientific advisory panel, Dr. William Sandborn of the Mayo Clinic, said he's uncertain the benefits of stem-cell transplants in Crohn's disease patients outweigh the risks.
Jordan's mother said all of about a dozen people who have had the procedure have been helped. The average Crohn's patient does not experience severe symptoms and does not need a transplant, she said. However, Jordan's Crohn's, because it is uncontrolled, actually poses a much higher risk of death than the procedure, she said.
Jordan has been hospitalized numerous times. He takes 33 pills a day. He suffers from bouts of digestive system bleeding that sometimes make it necessary for him to have a blood transfusion. His disease has stunted his growth and kept him from school and social activities. Yet, the youngster is getting good grades, played xylophone in his middle-school band and volunteers.
"Patients like Jordan, like my child, who have volunteered for this study are very desperate patients who are looking for light at the end of the tunnel and, it seems, have found it," Trachtenberg- Fifer said.

First Patient to Get Stem Cell Treatment for Crohn's in Remission
By Peggy Peck WebMD Medical News
Reviewed by Gary D. Vogin, MD
Aug. 10, 2001 -- Joy Weiss treated herself to a Big Mac for lunch on Friday and then considered whether she should top off the meal with a salad, some fruit, or both. For most 20-somethings, that doesn't sound like an extraordinary lunch choice, but for Weiss it's a miracle meal.
The miracle in this case is a controversial, experimental medical procedure that involves stem cells harvested from a patient's own bone marrow.
Ten weeks ago, Weiss became the first person to undergo the stem cell infusion for treatment of Crohn's disease, a condition in which the body's immune system attacks the patient's digestive tract. On Monday, researchers at Chicago's Northwestern Memorial Hospital completed a second such treatment in another Crohn's patient. The second patient, reportedly a 16-year old male, has requested anonymity, says Richard Burt, MD, lead researcher in the pilot study. Burt says, however, that the second patient is doing well.
For years, Weiss did not know a single day without pain, the gut-wrenching pain caused by Crohn's disease. "Until I was 19 I could never get my weight up above 90 pounds," says the 22-year-old Weiss. Dairy foods, salad, fruit, nuts, fried foods -- all were dietary no-no's for Weiss, who was diagnosed with Crohn's disease when she was 11.
Over the years of treatment for the condition, Weiss suffered through as many as 10 daily attacks of painful diarrhea characterized by watery, bloody stools.
Treating the Crohn's symptoms required the powerful steroid prednisone, which helped quiet the inflammation caused by the disease but also weakened other tissues in her body. Moreover, years of intestinal disease plus steroid therapy impaired her body's ability to absorb calcium, so she has developed osteoporosis, the bone-wasting disease normally associated with old age.
Two years ago, Weiss' doctor began using IV tubes to deliver "night feeds so that I could get some nutrients." Her gastroenterologist recommended her for a colostomy, a procedure in which a large part of the colon is removed and the patient wears an external bag for waste. But after examining her, "my surgeon said that although my body was ready for a colostomy, I wasn't ready psychologically, so he said he would look for other alternatives."
The surgeon turned to the Internet, and there he found an article about Burt's proposal to treat Crohn's disease with an experimental procedure that required a stem cell transplant, using cells harvested from the patient's own bone marrow. This type of transplant is used to treat leukemia and other cancers.
Burt and his co-investigator Robert Craig, MD, had been waiting for about three years for the "right patient for this procedure," says Craig, a professor of medicine at Northwestern University Medical School.
The pilot study in which Weiss was the first patient will eventually include 10 Crohn's patients who have "failed all other accepted therapies," says Burt. Craig tells WebMD the patients not only "will have failed all other therapies, but they also must convince me that they are willing to take the risks associated with stem cell transplant."
continued...
Stem cell transplant is an experimental procedure that definitely carries its own risks. First, the cells are harvested from the patient's bone marrow, and then the patient is treated with powerful chemotherapy drugs, which are used to destroy the patient's immune system. After the immune system is destroyed, the patient's stem cells are injected back into the body and the patient is kept in a sterile environment for two weeks so that the "new" immune system can develop. During this time, any infection can pose fatal risks.
Because Crohn's disease is usually not fatal, some researchers are questioning the advisability of treating the disease with such a risky procedure.
In a statement released Thursday, the Crohn's and Colitis Foundation of America said "We are not certain that the benefits of stem cell transplants in Crohn's disease patients outweigh the risks. ... Scientists have yet to determine whether stem cell transplant can initiate a long-term remission in people with Crohn's disease. In addition, the potential benefits of this therapy must be weighed against the risk of infection. While Crohn's patients have an altered immune system, researchers have not yet determined whether Crohn's can be qualified solely as an autoimmune disease. Until those questions are answered through carefully monitored, long-term clinical studies, stem cell transplant in Crohn's disease patients remains an investigational therapy."
Craig tells WebMD, "I agree with the CCFA. Believe me, a patient has to convince me that this is the absolute right thing for him or her." He says that he worries "about the possibility that I will lose a patient to this therapy."
The type of caution expressed by Craig is well placed, says Richard MacDermott, MD, head of gastroenterology and immunology at Albany Medical College in New York. "This is obviously a truly investigational procedure at the very beginning of the investigational ladder. It has a long, long way to go," MacDermott tells WebMD.
"I don't personally know the [rate of sickness and death] associated with stem cell transplant, but it has got to be significant," says MacDermott, who is a trustee of the Crohn's and Colitis Foundation of America.
Burt says the procedure "wasn't done in a cavalier or relaxed manner -- the procedure was approved by the FDA." He says, too, that the chemotherapy used in his stem cell protocol is not as toxic as earlier stem cell transplant experiments. "The only complication that we had was a two-day fever," says Burt, who adds that tests done during that two-day period turned up no evidence of infection.
From her perspective, Weiss says she underwent two cycles of chemotherapy and neither was "as bad as my worst days with Crohn's." She says that she started feeling better "almost right away. All the pain didn't leave but it started getting better right away. This is the first time I have had a Crohn's remission in 11 years."
continued...
Weiss spent about two and half months in Chicago undergoing pretreatment screening, treatment, and immediate follow-up. She is expected back in Chicago on Aug. 18 for a follow-up exam and then will return again at six months, nine months, and 12 months for follow-up. After 12 months, "I'll go back every year for five years," says Weiss. Craig says that it will take at least five years to confirm a true remission of disease.
Meanwhile, at her home in Mariaville, Maine, population 500, Weiss is enjoying the "first summer of my life." Always interested in horses, Weiss is anticipating applying to college to study "equine science. I have a mare here and now I am able to go out and walk the mare. It is a miracle."

Stem Cell Transplants Cure Crohn's Disease
Another advance in regenerative medicine is reported in the Reno Gazette-Journal. Ten sufferers of the deadly Crohn's disease have been cured by stem cell transplants that regenerate the damage to their intestines and immune system. The article focuses on the young man who will hopefully be number 11 and live to see a full life. This is the sort of amazing application of stem cell medicine, like recent advances in regenerating normally fatal heart damage, that we hope will become commonplace. Being able to regenerate any part of the body in this fashion will lead to large gains in healthy lifespan.

More about Stem Cell Research, Stem Cell Transplants and Crohn's Disease:
Stem Cell Transplant
What is a stem cell transplant?
The stem cells corresponding to each part of the body provide instructions for how to grow that part. For Jordan's kind of stem cell transplant, bone marrow was drawn from his hip bone using a long needle. The stem cells were separated out and frozen. Jordan's immune system was then partially destroyed by high-dose chemotherapy, and his stem cells were reintroduced to his body in the hopes that they will multiply and build a healthy immune system.
Most stem cell transplants of this type are autologous, meaning that the patient is both the donor and the recipient. Only cells are transplanted; the procedure does not involve the replacement of any organs or other body parts. Although the transplant itself does not involve surgery, Jordan has had many surgical procedures to implant and remove ports and catheters used to inject and draw fluids and drugs.
How often are stem cell transplants performed? What are the chances for success?
Although about 2.5 million people worldwide have had stem cell transplants for various diseases (usually certain cancers), only between 15 and 20 people have had stem cell transplants to treat Crohn's disease. Jordan was the youngest patient in the United States -- and the first at Duke University -- to undergo the procedure as a treatment for Crohn's disease.
Each patient who has previously had a stem cell transplant for Crohn's disease has experienced almost complete remission. Reports from the patients and their medical teams continue to be very encouraging. The patients have experienced significant improvements, and many have been able to return to lives essentially free of the symptoms of the disease. Many have been able to dramatically reduce or eliminate their dependence on daily medication, and the resulting side effects. The younger patients have experienced growth spurts, as their bodies are relieved of the stress of the disease and receive proper nutrition.
When and where was Jordan's transplant performed?
Jordan's transplant was performed on June 2, 2005, by a medical team at the Pediatic Bone Marrow and Stem Cell Transplant Program at Duke University Medical Center. This team includes hematology and oncology specialists, gastroenterology specialists, and other support staff. Jordan and a parent travelled to Duke on April 2, 2005, and returned home to Roanoke, Va., on July 31, 2005.
How long does the stem cell transplant take?
The transplant itself (the reintroduction of Jordan's previously harvested stem cells to his body) took only 30 minutes, but the entire transplant protocol took about four months. During that time, Jordan lived in the hospital and in an apartment near the hospital. As his health permitted, he participated in distance learning and received homebound tutoring to keep up his high school studies. It will take about one year for Jordan's immune system to completely rebuild itself. Jordan will also be monitored by doctors in Roanoke, and at the treatment site, for routine checkups.
What risks and side effects are associated with a stem cell transplant?
The primary side effects of the transplant come from the chemotherapy and other drugs involved in the protocol, and not the transplant itself. Jordan has experienced nausea, loss of appetite, and hair loss. Because Jordan's immune system was partially destroyed, he is at an increased risk of infection. To guard against this, he was hospitalized in a special room with a positive air pressure system and high efficiency particulate air (HEPA) filtration. Even after returning to Roanoke, his exposure to people and places is restricted. Although all medical procedures carry some risk, and stem cell transplants carry a higher risk of complications than some other procedures, the risk of death from an autologous stem cell transplant is still extremely low.
How much will the stem cell transplant cost?
For more information about the costs associated with the transplant, see About the Fund.
Aren't stem cell transplants very controversial?
The political controversy surrounding stem cells relates to the use of animal or fetal tissue to clone embryos for research. In Jordan's transplant, like in most stem cell transplants of this type, Jordan received his own stem cells.

Interesting Story about a 10 Year Old with Crohn's and Remicade

NORTH PROVIDENCE

He’s destined for a trip to Disney World and a visit to the White House for a possible meeting with President Bush.

But 10-year-old Jacob Kaufman admits that if there’s one thing that leaves him excited these days, it’s not the trips or any honors but the fact that he may have turned a corner in battling a rare form of Crohn’s disease that made him miss school for nearly six months.

He’s not out of the woods yet. But after undergoing so many tests, procedures and surgeries, Jacob, a fifth grader at James L. McGuire School, is at the point where some doctors at Hasbro Children’s Hospital believe his disease is in remission and that he may be ready for another try for a reverse colostomy that would allow him to live a normal life once again.

In part because he has shown so much tenacity, and even courage, the hospital has named Jacob its first-ever representative to the Children’s Miracle Network Champions Across America program, which honors children who have triumphed despite severe medical adversity.

The network is both a fundraising tool for the nation’s children’s hospitals and a way of providing inspiration to children and their families.

Jacob shares his time between two households: with his father, O. Brian Kaufman, who lives on Smithfield Road with his companion, Michelle Niestrepski; and his mother, Joanne Kaufman, who lives in Pawtucket with her companion, Edward LaRose.

As Jacob and his family tell it, his story began 13 months ago when he woke with a fever that wouldn’t go away, accompanied by severe pain and constipation such that he could hardly walk. Only after a CAT scan did doctors discover that he suffered from a rare form of Crohn’s disease, in which a high white cell count was fooling his body to attack tissues in the intestine, ultimately leading to an abscess that was strangling his rectum.

He was in and out of the hospital 81 days as doctors employed different strategies to reduce the infection. But he was an unusual patient in another way: the 10-year-old read everything he could about Crohn’s disease, became informed on all the medicines he was taking, and made it clear he wanted to be one of the decision-makers.

“Since the beginning he’s been part of every conversation with the doctor,” recounts his father, Brian, an instructor of English at Quinebaug Valley Community College in Danielson, Conn.
Indeed, battling Jacob’s disease has been a family affair. During the week, Joanne, who works at Regine Printing in Pawtucket, and Edward, who was temporarily unemployed when the company he worked for moved to Cleveland, took turns standing watch at the hospital at nights and during weekdays; while Brian, whose health insurance was paying the bulk of the nearly $1 million that the treatments were costing, and Michelle, who was then nearing completion on her doctorate in English at the University of Rhode Island, took over the weekends.

When the family realized that one of the operations fell on the same date as the opening of the new Harry Potter movie, which Jacob wanted to see, the five resolved the dilemma by going to a special midnight show, just a few hours before Jacob was slated to report to the hospital.
The parents recall other moments, such as when Dr. Jason Shapiro of the Hasbro staff read chapters of a newly released Harry Potter book for 2½ hours while Jason was undergoing an MRI. And when Jacob complained “what did they do to me,” Dr. Richard G. Gillerman saw to it that hospital staff would no longer put a catheter on him unless Jacob approved. Jacob was also the one who decided whether he should be injected with a new drug, Remicaid, that had been effective for 70 percent of patients but carried risks. As Jacob explained yesterday: “I just decided to try it because I didn’t think it could get worse than I already was.”

Last September, just four days after being injected with the new drug in a four-hour procedure, Jacob was feeling great, so much so that he was ready to go back to school.
Since then he’s been a straight A student, and taken up the clarinet and playing with rubber swords. He’s gained 10 pounds.

The hospital originally wanted to honor Jacob with a celebration today at his school, but school officials rejected that idea saying it would have entailed too many complications. So the hospital turned to Wal-Mart, which is giving Jacob a $1,000 shopping spree at its Coventry store at 10 a.m. today.

There are other events slated for next month — a celebration with other Children’s Miracle participants at Disney World, followed by a charter flight to Washington.

Basic Facts on Humira

For people with Crohn's disease, Humira may be effective if Remicade no longer helps, new research shows.

"We are very encouraged by the findings of this study and look forward to larger prospective studies," says researcher Konstantinos A. Papadakis, MD, with the Inflammatory Bowel Disease Center at Cedars-Sinai Medical Center in Los Angeles, in a news release. His paper appears in the current issue of American Journal of Gastroenterology.

Crohn's disease Crohn's disease is a serious chronic and inflammatory disease of the intestinal tract, causing diarrhea, cramping, stomach pain, weight loss, and in some cases rectal bleeding. These symptoms wax and wane, with periods of active inflammation and disease followed by periods of inactivity. There is no cure for Crohn's disease, but Remicade has helped to greatly reduce symptoms of this lifelong disease.

Remicade, a drug that works by blocking a part of the immune system know as TNF, is currently the only FDA-approved "biologic" treatment of this kind for the treatment of Crohn's disease. The drug lessens the symptom flare-ups and helps keep people in remission for long periods of time. It also helps people avoid developing fistulasfistulas, a common complication in people with Crohn's disease. Fistulas are openings of the intestine into other organs or on to the skin, such as around the anus -- which can seriously affect quality of life, and often requires surgery.

Crohn's Disease vs. Humira
In his study, Papadakis tested Humira, a similar drug that suppresses the immune system and is FDA-approved for treatment of rheumatoid arthritis.
His study involved 13 patients with Crohn's disease. All had been taking Remicade, but were no longer getting any relief from it. In the six-month study, they got an initial 80-milligram injection of Humira, then 40-milligram injections every two weeks. Researchers tracked their symptom relief.

Of the 13 patients, seven had complete symptom relief, four had partial relief, and two got no relief. Six of the patients required a boost in their dosage to maintain symptom relief.
Almost three quarters of the patients (73%) were able to discontinue or significantly decrease their concurrent dose of steroids.

All patients tolerated Humira without any allergic reactions; two patients had a skin reaction at the injection site.
Overall, the study shows that Humira is a strong option for Crohn's disease patients -- when Remicade no longer works, writes Papadakis.

Remicade's side effects include:
A rare but deadly liver reaction
Serious, even fatal, infections like tuberculosis
Increased risk of certain types of cancer like lymphoma
Increased risk of an autoimmune disorder such as a lupus-like syndrome
Humira's side effects include:
Serious, even fatal, infections like tuberculosis
Increased risk of certain types of cancer, like lymphoma
Increased risk of an autoimmune disorder such as a lupus-like syndrome

Tysabari Approved for Crohn's Disease

Tysabri Approved for Crohn's Disease

TUESDAY, Jan. 15 (HealthDay News) --

Tysabri (natalizumab) has been approved by the U.S. Food and Drug Administration to treat moderate-to-severe Crohn's disease in people who haven't responded to other therapies.
Tysabri, made by the Ireland-based drugmaker Elan and Massachusetts-based Biogen Idec, was approved in 2006 to treat relapsing multiple sclerosis.

The drug has a boxed warning of increased risk of progressive multifocal leukoencephalopathy (PML), a viral infection affecting the brain that could cause severe disability or death, the FDA said in a statement. Anaphylactic reactions and liver injury also have been reported in some users.

Crohn's patients prescribed the drug will be enrolled in a restricted distribution program called Crohn's Disease-Tysabri Outreach Unified Commitment to Health (CD-TOUCH). Under the program, physicians must evaluate Crohn's patients using Tysabri after three months and should discontinue use of the drug if there is no improvement, the FDA said.

Crohn's is an incurable bowel disease with symptoms that may include diarrhea, fever, rectal bleeding, malnutrition, narrowing of the intestines, cramping, and abdominal pain. The disease, affecting more than 1 million people worldwide, can also lead to abnormal connections called fistulas from the intestines to the skin or internal organs.

More about Tysarbi:

Elan Corp., Ireland's biggest drugmaker, and partner Biogen Idec Inc. won U.S. approval for the use of their multiple sclerosis medicine Tysabri as a treatment for Crohn's disease.
The Food and Drug Administration issued its determination in an e-mailed statement today. Elan and Biogen said in a separate statement that they expect Tysabri to be available to Crohn's patients by the end of February, once an FDA-approved plan to minimize risks of the drug is in place.

The companies are trying to expand the use of the medicine, which brought in $93 million in the third quarter. Tysabri is taken by about 21,000 MS patients under prescribing restrictions because of a risk of rare, fatal brain infections. Similar rules will be used in treating Crohn's disease, a chronic inflammation of the intestines that affects about 1 million people worldwide.
The approval is ``an important step in the armamentarium for treatment but one that carries extreme risks,'' said Joyce Korvick, deputy director of the FDA's office of new gastroenterology drugs, on a conference call with reporters.

Other therapies for Crohn's include Abbott Laboratories' anti-inflammatory medicine Humira, which exceeded $3 billion in global sales for the first time in 2007, Abbott Chief Financial Officer Thomas Freyman said on Jan. 7.

Dublin-based Elan discovered Tysabri, and is developing the medicine as a Crohn's treatment. Its partner Biogen, based in Cambridge, Massachusetts, lost more than $5 billion in market value in December after announcing it failed to find a buyer and planned to remain independent.
Biogen rose 90 cents, or 1.5 percent, to $59.92 at 4 p.m. New York time in Nasdaq Stock Market composite trading. Elan's American depositary receipts, each equal to one ordinary share, rose 10 cents, or less than one percent, to $24.86.

Pulled From Market
Tysabri was the best hope in a decade for MS patients when it was approved in November 2004. It was pulled from the market three months later because of links to a neurological disorder called progressive multifocal leukoencephalopathy, or PML. Three patients contracted the disease, and two died.

About 14,000 patients have been treated with Tysabri since it was returned to the market as a multiple sclerosis drug in July 2006. No cases of PML have been reported. An advisory panel to the FDA voted 12-3 last July to recommend approval of the added use for Tysabri for Crohn's disease, with restrictions to reduce the risk of infection.

In October, the FDA extended its review. A month later, European regulators rejected an appeal by Elan and Biogen of an earlier decision that the product not be approved and marketed for Crohn's.

One Day away from Humira and article on Pregnant Woman that Died from Crohn's

I need a Humira shot. I can feel it. Ate too much crap during the Super Bowl and am spending my energy fighting off the cold that is going around as well as a Crohn's Flare up. The Pats lost in a great game. They played poorly and got beaten by the better team on that night. Good for the Giants...heartbreaking to lose the Super Bowl while on the verge of the greatest season in history, but it happens. I am happy my kids actually saw a New England team fail....I think they think championships are a given. Certainly not the way I grew up!

People ask me pretty often if people die from Crohn's. Unfortunately they do. Sad Story below.

(article is here)A PREGNANT woman who died with her unborn son after emergency surgery for a chronic bowel condition was sent home two weeks earlier because doctors thought she only had morning sickness, an inquest heard.

Former University of Worcester student and newly-qualified teacher Melanie Gough, aged 24, who was six months' pregnant with Luie, died after surgery for Crohn's disease, which doctors failed to diagnose, despite four earlier visits to hospital. Richard Gough claimed in court that his daughter, who was due to marry partner Phil Adams before her illness, would not have died had Gloucestershire Royal Hospital staff acted sooner. Mrs Gough, who fell pregnant in October the previous year, was treated throughout January 2007 for severe vomiting, dehydration and weight loss.

But she was discharged at the end of the month, after doctors wrongly diagnosed an unusually severe form of morning sickness, or hyperemesis gravidarum.
When she was readmitted at the end of February, after her symptoms worsened, an expert consultant immediately diagnosed her with Crohn's disease and ordered an operation to remove part of the colon.

She died on March 6 last year after she was found to be suffering from a septic infection.
Mr Gough told Gloucester Shire Hall that his daughter was one of five children and active in her local community in Longhope, in the Forest of Dean, Gloucestershire.
He said: "She was a real home-body, and very close to her mother. They did everything together. When it was time for her to go to university we found her a place close to home where she could travel back and forth every day. pregnacy and crohn's

"She went to Worcester university, stuck it out and got a good degree. She didn't get a teaching job straight away, and worked in various pubs to support herself. She also got supply teaching work.

"She had been with her fiancee Phil for four years, and they were due to get married in April. She lived a very happy life and was very involved with her local community. She kept two horses in fields were she lived."
She fell pregnant on October 1 2006, and had the couple had named their son Luie.
Mr Gough said she had enjoyed good health, apart from being diagnosed with irritable bowel syndrome at university.

But after Christmas she began to suffer with projectile vomiting, constipation and diarrhoea, he told the hearing. Despite several trips to the maternity unit with ongoing sickness and rapid weight loss, Mr Gough said that nurses urged her to put up with the pain.
He told the court: "They said, 'Pull yourself together. This is part of pregnancy. You'll get used to it'."

It was not until February 15 that she was diagnosed with Crohn's disease when Professor Hugh Barr, a consultant gastroenteritic surgeon, became involved in her care.
Mr Gough said: "They realised there was something seriously wrong. There was 100 per cent obstruction in her bowel and it was so advanced that the intestine had become stuck to the abdominal wall.

They said, 'Pull yourself together. This is part of pregnancy. You'll get used to it.'
Richard Gough, father But after the procedure she again became seriously ill and was treated in hospital again on March 6 where it was clear that she was terminally ill.
Mr Gough said: "After they injected her through a tap her eyes closed and her chest started heaving. The doctor asked her to open her eyes and wake up. We were in shock.
"Phil and me were asked if we would prefer to save Melanie or the baby. We both agreed that Melanie should be our priority.

"Shortly afterwards, the doctor said she had suffered a second cardiac arrest and that the best doctors in the country were working on her. They said she was critical and didn't hold out much hope. "After she died she was put into an office full of papers.
"Our family are absolutely devastated by the loss of our daughter and her unborn child. We feel her death was unnecessary and completely avoidable.
"We feel that had her illness been treated earlier she could have been saved. There was at least half hour delay before they made any sort of attempt to do anything. We are not happy about her treatment before and after the operation."

Consultant obstetrician and gynaecologist, Mark Whittaker, who looked after Ms Gough throughout her pregnancy said that her symptoms bore all the hallmarks of morning sickness and that she had begun to improve. He said: "I thought she had emesis gravidarum (morning sickness). We see patients on a daily basis with pain and vomiting - it is very common in the first 16 to 20 weeks of pregnancy. But we thought there might be some other course, that's why a follow up was arranged. "We felt she had hyperemesis gravidarum and we treated the condition we felt was affecting Ms Gough.

County coroner Alan Crickmore asked: "With the benefit of hindsight could anything have been done differently? Crohn's disease during pregnancy is rare isn't it?"
Mr Whittaker said: "I think that it was extremely difficult to identify the cause of her symptoms. I think she was seen by four experienced obstetricians and four experienced consultant surgeons, proving how difficult it is to diagnose this condition."
The coroner said: "I understand that it is difficult to diagnose because a woman's body produces various hormones that act as immuno-suppressants."
Matthew Barnes, the family's barrister said: "She had had four admissions for symptoms that were getting worse and worse..."

Mr Whittaker said: "We were uncertain as to diagnosis so a surgical opinion was sought. I was uncertain about the symptoms but she seemed better - her pain was less and her abdomen was soft. "We felt that hyperemesis gravidarum was the most likely cause. I spoke to her and her partner and explained that because we were really uncertain as to cause and she was welcome back at any time."

Mr Barnes said: "The family want to know why more wasn't done to find out what was going on."
The court has yet to hear what part, if any, the delayed diagnosis played in Ms Gough's death.

Humira Kicking Ass for Abbott

Abbott Laboratories Inc on Wednesday posted a quarterly profit in line with expectations, driven by higher sales of its drugs and medical devices and favorable foreign exchange factors that bolstered overseas revenue.

Abbott posted a fourth-quarter profit of $1.20 billion, or 77 cents per share. That compared with a loss of $476 million, or 31 cents per share, in the year-ago period when the company took charges related to its purchase of Kos Pharmaceuticals.
Excluding special items, Abbott earned 93 cents per share, in line with the company's forecast of 91 to 93 cents per share.

Company revenue jumped 16 percent to $7.22 billion in the quarter, above the $6.96 billion average forecast of analysts polled by Reuters Estimates. Growth would have been 4.5 percentage points less if not for the weak dollar, which boosted the value of sales outside the United States.

The suburban Chicago-based health-care company said global revenue from prescription medicines rose 18.7 percent, fueled by double-digit gains for its Humira arthritis drug, Kaletra HIV treatment and TriCor medicine to lower blood fats called triglycerides.
Abbott, which is based in suburban Chicago, forecast that sales of Humira will rise to $4 billion in 2008 as the injectable drug makes further inroads against Johnson & Johnson's popular Enbrel. All three medicines work by blocking an inflammation-causing protein called tumor necrosis factor.

Global sales of Abbott's medical products, including diagnostics and diabetes-care brands, rose 11.5 percent.

Due for a Humira Shot

I feel like I am ALWAYS one step away from a Crohn's flare up. Dr. Shafran has just put me on weekly Humira shots. I am a day overdue because the Insurance company always screws it up, but my refrigerated shipment of Humira should arrive today. Hope all is well with you guys.

David Garrard - CBS Interview - 3:30 - Crohn's Focus?

CBS is doing a special on Jacksonville Jaguars quarterback David Garrard (and wife Mary) at 3:30. It will be about his "remarkable journey", and I assume it will focus on or at least highlight the football player's battle with Crohn's Disease.

Stay tuned for details and possibly a link to the inverview. As you know, I am a big football fan, and am dissapointed that I can't really cheer for my favorite athlete with Crohn's disease today...on account of them playing my team....the New England Patriots. Search my blog for several articles detailing David Garrard's Battle with Chron's.

-Scott

More info on his Crohn's (from jacksonville.com interview)
One test came in 2004, when he had surgery for Crohn's disease, a painful inflammation of the intestines. He takes medication every eight weeks, a 3?-hour procedure; his next appointment is Tuesday, three days after playing the Pittsburgh Steelers in the first round of the playoffs tonight.

"It's a horrible disease, something that a lot of people are affected by," he says. "But I think the Lord blessed me with it, so I could talk about it."
To Mary Garrard, her husband's Christian faith is a key to both his personality and his playing style. "About 95 percent of his temperament comes from his faith," she says. "We're both Christians: There's a higher power, God is in charge of everything, there's no reason to worry about anything."

From IBD site:
David Garrard has been fighting Crohn's disease since 2003. He was sidelined from playing football for the NFL and lost 35 pounds. This season he is back in full force, and the Jaguars have won 6 of his last 7 starts. He credits the turnaround in his health to Remicade. With starting quarterback Byron Leftwich possibly sidelined for the rest of the season, Garrard is now likely to start for the Jaguars for the rest of the year.
Most of us with IBD just struggle to get through a day, or a week, at a time. Sometimes a simple everyday activity like a shopping trip or a night out seems like an impossible task, rather than a pleasure. People with IBD such as David Garrard, Pearl Jam Guitarist Mike McCready, and San Diego Chargers legend Rolf Benirschke are good reminders for us--a productive and fulfulling life is possible with IBD!

Original Story of his Crohn's (From USAToday.com)
Jaguars backup quarterback David Garrard will have surgery next week to alleviate symptoms of Crohn's disease and hopes to be back in time for training camp. Garrard will have diseased tissue removed from where his colon meets his small intestine.
Jacksonville Jaguars' second string quaterback David Garrard will have surgery for Crohn's disease.

Crohn's causes blockage in the intestines, resulting in chronic diarrhea, abdominal pain, fever and weight loss. There is no known cause or cure, and it afflicts more than 500,000 people in the United States.

Garrard, 26, said he will have surgery next Thursday at Baptist Medical Center, and be sidelined until mid-July. He hopes to get himself ready for training camp in late July or early August.

Although the surgery will not cure the disease, Garrard said patients sometimes go 15 to 20 years without symptoms after the surgery.

"I'll be done with football by that time," Garrard said. "There shouldn't be any problems. I could have lived with it if I was a normal person."

Garrard decided to have the surgery after he was hospitalized last weekend when he was in constant pain because his intestines had swollen and were pressing on his bladder.
Garrard stared feeling sick in January and was diagnosed in March.

He completed nine of 12 passes last year for 86 yards and a touchdown. Although the Jaguars signed undrafted rookie Bryson Spinner to give them a fourth quarterback, coach Jack Del Rio said he will await Garrard's return.

"Get healed and come back," Del Rio said. "We're not rushing anybody."