Athletes with Crohn's Disease

It has been a while since I have posted and wioo start posting my own experiences again. In the meantime, its also been a while since I posted a list of athletes (past and present) who live with Crohn's Disease. So here you go:

David Garrard - Retired NFL Quarterback - Garrard suffers from Crohn's disease and has appeared in television commercials regarding treating the illness. He has spoken to children at the Painted Turtle Camp, a camp for children with disorders about living with Crohn's disease.

Carrie Johnson - Olympic Kayaking

George "The Animal" Steele - Wrestler - Maybe he got it from eating the turnbuckles

James Morrison - British Golfer

Kevin Dineen  and Theo Fleury - NHL Hockey Players with Crohn's (Thank god for pads)

Matt Light - NFL Football with Crohn's Disease - Go Patriots! The three-time Super Bowl champion had surgery to remove more than a foot of his intestine. Now retired from football, the athlete shares his story with others to raise awareness and educate the public about Crohn's disease.

New Johnson & Johnson Drug - Stelara Helping Crohn's Disease Patients

Johnson & Johnson's Stelara helped a significantly higher percentage of Crohn's disease sufferers than those who received a placebo, according to a study of patients who had not been helped by other commonly used drugs.

In addition, nearly 70 percent of patients who stayed on Stelara beyond the initial six weeks of the mid-stage study continued to respond to the drug and there was a significantly higher rate of remission at 22 weeks than in a placebo group.

Stelara, known chemically as ustekinumab, is already approved to treat the skin condition plaque psoriasis and is in late-stage testing for psoriatic arthritis. An approval for Crohn's would give the drug entry into an estimated $1.3 billion U.S. market and $2.7 billion market worldwide.

The intravenous biotech drug met the primary goal of the study as almost 40 percent of patients who received the 6 milligrams per kilogram of weight dose of Stelara achieved a clinical response -- defined as a 100-point reduction in the Crohn's Disease Activity Index (CDAI) -- after six weeks of treatment.

That compared with a response rate of 23.5 percent of patients who received a placebo.

Two lower doses of Stelara were also tested in the study of 526 patients with moderate to severe Crohn's disease who were not helped by, or could not tolerate, treatment with a widely used class of drugs known as TNF antagonists, such as Abbott Laboratories' Humira.

Those who received 1 mg/kg had a 36.6 percent response rate and the 3 mg/kg dose led to a 34.1 percent response rate.



"To see these kind of outcomes, where you have high response rates in the short term and then good remission rates out toward five or six months of therapy, it shows unequivocally that the drug is effective for treating Crohn's disease," said Dr. William Sandborn, the study's lead investigator, who presented the data at the Digestive Disease Week meeting in Chicago on Sunday.

"It's effective in the patient population that has the greatest unmet need at this point in time," Sandborn said of patients who do not respond to anti-TNF drugs.

He said a 100-point drop in the CDAI was clinically meaningful to patients. "They'll feel measurably better."

"The patient population was really quite ill and had very high disease activity, and despite that we saw nice response rates," Sandborn said.

In a second phase of the study, those who responded to Stelara after six weeks of treatment were given either a 90-mg injection of Stelara at week eight and week 16 or a placebo.

After 22 weeks, 69.4 percent of the Stelara patients maintained a clinical response and 41.7 percent were deemed to be in clinical remission. That compared with 42.5 percent who maintained a clinical response and a 27.4 percent remission rate in the placebo group.

Clinical remission was defined as a CDAI score down to 150. Patients in the study on average started at 320 or 325 on the CDAI scale, researchers said.

Crohn's is a chronic autoimmune disorder of the gastrointestinal tract that affects an estimated 700,000 Americans. Common symptoms are abdominal pain and diarrhea, and it can lead to bowel perforations. Many Crohn's patients require surgery when medicines no longer control symptoms.

The rate of infections and other serious side effects was similar in the Stelara and placebo groups, researchers said.

"We'll need more patients and longer-term data to really fully characterize the safety profile in Crohn's disease, but so far so good," Sandborn said.

Read more about Stelara for Crohn's Disease: http://www.foxnews.com/health/2011/05/09/crohns-patients-respond-new-medicine-study/#ixzz1O24uFkPV

Humira Causes Vision Problems - Abbot and Humira Face Lawsuit

Hmm, I took a lot of Humira for Crohn's Disease, and my eyes are much worse now than they were back in 2008. Maybe I should look into this!

Abbott Laboratories faces a product liability lawsuit over Humira, their blockbuster arthritis and Crohn’s Disease drug, which was filed by a woman who alleges that she has developed optic nerve damage and permanent vision problems from Humira.


The Humira lawsuit was filed by Jamie Bixby in the U.S. District Court for the Northern District of Illinois on May 20, 2011.

Bixby alleges that side effects of Humira caused her to develop optic neuritis, an inflammation of the optic nerve that has left her with permanent impairment to vision in her left eye and a future risk of other nerve problems, including multiple sclerosis or loss of vision in her other eye.
Humira (adalimumab) is a “biologic” drug, which is part of a class of medications known as TNF blockers or tumor necrosis factor blockers. The medication was launched by Abbott Laboratories in 2003 for treatment of rheumatoid arthritis, but was subsequently approved for other indications, including treatment of Crohn’s Disease.

According to allegations raised in the complaint, Abbott downplayed the potential risk of Humira vision problems, despite the fact that information was available to establish notice that the drug may increase the risk of optic neuritis and other nerve damage from central nervous system (CNS) demyelination.

Bixby began using Humira in April 2008 for treatment of Crohn’s Disease, after her doctor suggested that the medication may be a better option than the long-term use of the steroid prednisone, which had been managing her symptoms. No warnings were provided on the drug label or prescription information that Humira may cause permanent damage to her vision at the time she began taking the medication.

In May 2008, Bixby indicates that she began experiencing severe headaches and pain in her left eye, which led her to call the toll free number provided with her Humira packet to ask if the problems may be related to the use of Humira. According to allegations contained in the complaint, Abbott’s nurse told her that eye pain was not related to Humira and suggested she contact her physician.

When Bixby contacted her doctor, she was told by the doctor’s office that they were unaware that eye problems were a known issue with Humira and scheduled an appointment for the following week. However, the next day Bixby noticed that the vision in her left eye became blurry with blacked out areas, causing her to leave work and seek immediate medical attention at an eye clinic.

Bixby was diagnosed with optic neuritis from Humira in both eyes, though she only experienced vision problems in her left eye. Following her diagnosis, Bixby was admitted for inpatient treatment to receive 4 days of intravenous steroids.

“Unfortunately, because Abbott had not adequately warned Ms. Bixby or her physician about the risk of optic neuritis, the diagnosis and treatment came too late to prevent permanent vision impairment for Ms. Bixby,” the complaint states.

Bixby previously worked as a web designer, and claims that she continues to suffer from headaches and eye pain that impact her ability to look at a computer screen for significant periods of time. She also continues to suffer blurry vision and black holes in the vision from her left eye, and has extreme light sensitivity and changes to her depth perception that affect her ability to drive or ride a bike.

Plaintiff alleges that Abbott downplayed the risk of Humira side effects, including the risk of Central Nervous System (CNS) demyelination, which can cause optic neuritis, transverse myelitis, multiple sclerosis or other nerve problems.
http://www.aboutlawsuits.com/vision-problems-from-humira-lawsuit-18413/

New Story of Hockey Player with Crohn's Disease

Keith Nicholson could not escape the celebration after he broke open a regional championship a week ago with three goals during a dramatic third period. After the buzzer sounded, teammates surrounded the inspirational forward and doled out congratulations.

Hockey buddies do not hug, they hit.

It's probably a good thing Nicholson had the helmet and the body armor on because he got punched in the arm, slapped in the head, poked in the chest.

The recognition of a big moment came from every direction. It was the senior's final game in a Mounties uniform at Sport-O-Rama, and the folks who know the story line weren't letting him slip off the ice without a proper send-off.

"It was so much fun watching a friend tear it up like that," classmate Willy Baker said.

Nicholson was diagnosed with Crohn's disease at the age of 12, and was fighting a flare-up a year ago when Suffern was preparing for the state tournament. He was hurting. Nicholson came back from that attack faster and stronger, and will be playing against Williamsville North in a Division I state semifinal at Utica Memorial Auditorium on Saturday.

Probably.

"It could pretty much come back at any time, so even though it's called 'remission,' it never really goes away," Nicholson said of the condition, which causes inflammation of the digestive tract. "Last year, I dropped to 130 pounds when I was sick. Right now, I'm probably 165 pounds, but I'm on the medicine always. There's nothing they can do when you're in a flare-up, you have to just deal with it, and that's really the worst part."

And that's as much as he'll complain.

"When he was dealing with everything last year, he didn't tell anyone," Mounties coach Rob Schelling said. "He just keeps battling. That's why he's so well liked by his teammates and friends and teachers; he cares more about others than he does himself."

Nicholson is part of an energetic first line with Mike Gorton and John Redgate, and he's second on the squad with 19 goals. The natural scorer doesn't mind playing in the shadow of teammates like Jake Jaeger, Tyler Stark, Jon Fuchs and Baker.

(from Lohud.com)

Crohn’s disease trial uses stem cells taken from placentas

A placenta provides a home for a baby, keeps the mom's body from rejecting it and soon could help patients suffering from Crohn's disease, multiple sclerosis and stroke, officials said Wednesday at the World Stem Cell Summit.

Patients with Crohn's disease, which inflames the digestive tract, have shown improvement with placenta-derived stem cells, which are adult stem cells, said Steven A. Fischkoff, vice president, clinical and medical affairs at Celgene Cellular Therapeutics.

The New Jersey-based biotech company is moving into the second phase of a Food and Drug Administration-approved clinical trial that uses placenta stem cells in patients with Chron's disease. It also is beginning a trial with patients suffering from multiple sclerosis.

Soon it is planning to seek FDA approval to use the placenta stem cells in patients suffering from stroke, based on the work of a neurology researcher at Henry Ford Health System.
"This could potentially affect a lot of people … and if we are successful, we will reduce the chances that people will have to go into nursing homes or rely on someone for care," Fischkoff said during the last day of the World Stem Cell Summit. "What really terrorizes people with a lot of these diseases is that they lose their independence."

The World Stem Cell Summit, a global gathering of researchers and leaders in Detroit, wrapped up its sixth annual event Wednesday at the Detroit Marriott. The three-day event, which was preceded by a free day at the Detroit Science Center, brought in nearly 1,000 scientists, industry leaders and advocates.

Attendance was down slightly from last year's summit, but this year's was the best ever staged, said Bernard Siegel, executive director of the Genetics Policy Institute, which presents the summit.
Prior to the summit, University of Michigan announced it had created its first embryonic stem cell line.
During the summit, an announcement was made about the new Oakland University William Beaumont Institute for Stem Cell and Regenerative Medicine. Scientists and companies from around the globe showcased their research and innovations.

"There is a fight to be fought and a war to be won," said Grant Albrecht, a patient advocate living with Transverse Myelitis, a neurological disorder.

The stem cell community has to stay focused on keeping the research on track, Siegel said, and that means mobilizing support for federal funding of embryonic stem cell research, which is currently in jeopardy with a lawsuit that seeks to ban it.

"Funding in the U.S. for embryonic stem cell research is on a knife's edge," Siegel said. "It can go either way. We can go back … or we can move into the 21st century. If you take the tool out of the tool kit, you delay the research to cures. It is akin to crushing hope."


From The Detroit News: http://www.detnews.com/article/20101006/METRO/10060437/1409/metro#ixzz12ZTjxTwz

From Wall Street Journal - Unraveling Crohn's Genetic Trail

From April 27, Wall Street Journal In the search for the causes of irritable-bowel conditions like Crohn's disease, doctors had long focused on diet. But studies have repeatedly failed to show that foods are to blame.

Now, researchers are focusing on genetic mutations linked to these conditions. The hope: to develop a therapy that fixes those mutations in order to actually cure diseases like Crohn's and ulcerative colitis, rather than just treat the symptoms.

For more than 15 years, Warren Strober has been studying these diseases at the National Institute of Allergy and Infectious Diseases in Bethesda, Md. He and other scientists have shown that dozens of genes are linked to Crohn's and ulcerative colitis.


Dr. Strober's current work centers on developing a stem-cell-based therapy to correct one particular gene mutation for Crohn's. But the wide variety of mutations means that there could eventually be a number of different treatments that target patients based on their genetic profiles, a strategy known as "personalized medicine."

In irritable-bowel conditions, the immune system attacks harmless bacteria normally found in the gut. This response leads to inflammation of different parts of the digestive tract, which in turn can cause pain, fissures, abscesses and obstruction.

In Crohn's, the walls of the digestive tract become inflamed, and any part—from the mouth through the large intestine—can be affected. With ulcerative colitis, only the lining of the bowel is damaged. Together, the conditions affect about 1% of the U.S. population.

People with Crohn's can suffer from chronic diarrhea, abdominal pain, fever, fatigue and sometimes rectal bleeding. They may also have problems absorbing an adequate amount of nutrients from food, particularly if too much of the intestine is removed. The disease can stunt the growth of children.



Treatments have improved in recent years and now include powerful, injectable biologic medicines that reduce inflammation, such as Johnson & Johnson's Remicade and Abbott Laboratories' Humira.



But these therapies aren't cures, and not everyone responds to them. In severe cases, patients must undergo surgery—sometimes multiple surgeries—to remove parts of the bowel or colon that are blocked. For Crohn's, in particular, because it can develop in any part of the gut, inflammation can recur even after surgery in a different segment of the digestive tract. Within 10 years after surgery, 80% to 90% of Crohn's patients will have a relapse, according to researchers.

In their search for a cure, Dr. Strober says he and his colleague, Ivan Fuss, are "bounding ahead" on research in mice that aims to fix a genetic mutation called NOD2 associated with Crohn's. The idea would be to have the body repair itself by growing the corrected gene using so-called induced pluripotent stem cells.

Stem cells are those that can develop into different types of specialized cells, like heart or muscle cells, and are mostly found in embryos. Induced pluripotent stem cells, or iPS cells, are made by taking adult specialized cells and turning back the clock, engineering them to an earlier stage where they can reproduce again.

Dr. Strober's team has already figured out how to take cells from the intestine and convert them into iPS cells. Now, they are working on fixing the genetic defect in the iPS cells before testing the therapy in animals.

First, they take segments of human DNA that contain the NOD2 gene mutation and break the DNA apart. Then, like a puzzle, they reassemble the DNA except for the one broken piece—the gene mutation. That piece is replaced with a new, corrected piece of DNA.

After the gene mutation is corrected, the completed iPS cell will be administered into the bone marrow of mice with Crohn's disease, where the new intestinal cells that develop should be fully functioning again. They plan to begin testing mice later this year.

The biggest challenge with this type of "integrated science" approach—one that combines genetic information, physical symptoms and biology—is narrowing down which genetic combinations are critical to which patients, according to Stephan Targan, director of the division of gastroenterology and the institute for inflammatory bowel immunobiology at Cedars-Sinai Medical Center in Los Angeles.

Dr. Strober and others are also looking at different genetic and molecular pathways that could lead to better understanding and treatments for Crohn's and ulcerative colitis.  Other researchers are examining how genetic mutations affect the type of bacteria that are found in the digestive tract. Greater presence of certain types of bacteria may be more likely to trigger an immune response. Still another area of research focuses on understanding how individuals' genetic makeup can make them susceptible to certain other Crohn's triggers, such as stress, smoking and the use of nonsteroidal anti-inflammatory painkillers.

Celgene PDA-001 Stem Cell Therapy is Safe Treatment for Crohn's Disease

According to Business Week, Celgene Corp. reported a successful safety trial of a placenta-derived stem cell therapy as a treatment for Crohn's disease. Celgene said the early stage trial showed PDA-001 is safe. It also showed signs of effectiveness, and Celgene is planning to begin studying the therapy as a treatment for several other diseases.

The study involved 12 patients with moderate to severe Crohn's disease who had not been helped by at least one previous treatment. They were given two infusions of Celgene's PDA-001 at one week apart, at one of two doses. Celgene said PDA-001 is derived from normal, full-term human placental tissue. The treatment is being studied by the company's Celgene Cellular Therapeutics unit.

Crohn's disease is marked by chronic inflammation of the gastrointestinal tract. Almost 1 million people in the U.S. suffer from the disease, according to Celgene.

Anyone involved in the Celegene study for Crohn's?

Crohn's Disease Flare Up

Maybe it is my diet, maybe it is stress, but I sure feel like I am entering into a flare up. Not as much stomach pain, but I feel like I spend so much time in the bathroom. Usually by now I've pulled out of it, and I haven't been on any medicine for the past couple of years, but it is starting to look like I need to find a good gastro in South Florida. Anyone have any recommendations on either pulling out of a Crohn's Disease Flare up or a good gastroenterologist in the Boca Raton area?

Living with Crohn's - Vitamin D Deficeincy Linked to Crohn's

Chronies - Are you getting  your Vitamin D?

MONTREAL, Jan. 30 (UPI) -- Canadian researchers say vitamin D can counter the effects of Crohn's disease. Researchers at Montreal's McGill University Health Center and University of Montreal found vitamin D acts directly on the beta defensin 2 gene, which encodes an anti-microbial peptide and the NOD2 gene that alerts cells to the presence of invading microbes.

Both Beta-defensin and NOD2 have been linked to Crohn's disease -- an autoimmune disorder in which a defect in innate immune handling of intestinal bacteria leads to inflammatory bowel disease.

"Our data suggests, for the first time, that vitamin D deficiency can contribute to Crohn's disease," study leader Dr. John White of McGill says in a statement.

White suggests siblings of patients with Crohn's disease who have not as yet developed the disease make sure they are vitamin D sufficient. "It's something that's easy to do, because they can simply go to a pharmacy and buy vitamin D supplements," he says.

The study findings are published in the Journal of Biological Chemistry.

New clinical Trial for Crohn's Disease

Robarts Clinical Trials at The University of Western Ontario in London, Canada, has been awarded a 4.7 million dollar grant to conduct a randomized controlled trial evaluating treatment options for Crohn's disease. The outcome is expected to lead to a more streamlined treatment path and better disease management for patients. Abbott, the global health care company, has provided a grant to complete research for the REACT (Randomized Evaluation of an Algorithm for Crohn's Treatment) study.


Crohn's disease is a chronic inflammatory disorder that is characterized by symptoms of diarrhea, abdominal pain and gastrointestinal bleeding. It typically effects younger people and can result in serious complications such as bowel obstruction. Although conventional anti-inflammatory treatments such as prednisone improve symptoms, they are associated with important side effects and are only partially effective. Many patients require surgery to treat the disease.

The REACT study will be carried out at 40 gastroenterology practices in Canada and Belgium. The sites will be randomly assigned to treat patients with Crohn's disease to either a conventional management strategy featuring gradual escalation of drug therapy or a newer paradigm that features early use of combined immunosuppression with a tumor necrosis factor alpha blocking drug and an anti-metabolite.

"This trial builds on the results of recent studies that suggest use of combined therapy early in the course of treatment yields superior long-term results," says Dr. Brian Feagan, the lead investigator for the study. "We are excited about this project since it is the first large-scale, community-based evaluation of this approach. We expect that patients treated with combination therapy will be more likely to enter remission and rates of hospitalization and health-care utilization will be reduced." Dr. Feagan is the Director of Robarts Clinical Trials and a professor in the Department of Medicine at Western's Schulich School of Medicine & Dentistry.

David Garrard - Crohn's Disease Hero!

No matter how this football game ends, David Garrard is doing an awesome job. Through 3 quarters, David Garrard has 3 touchdown passes and 0 interceptions to Peyton Mannings 3 and 1. My favorite athlete with crohn's disease is having a monster night and after 3 is leading his Jacksonville Jaguars to a potential victory over the Colts. Not bad for a fellow Chronie!

Does Brock Lesner have Crohn's Disease or Colitis

Does Brock Lesner have Crohn's Disease? Dana White announced that Brock Lesnar has a potentially career-ending illness. White didn't name the illness, except to quiet unfounded speculation by saying it isn't cancer or AIDS and that it is an "intestinal disorder" that requires "major surgery." We do know that UFC fighter Drew McFedries has fought with and fought against Crohn's for many years (see my blog post)


This, of course, has fans speculating about what the mystery illness could be. So far, the best guess appears to be Colitis or Crohn's Disease. Stay tuned, if Brock Lesner is confirmed to have Crohn's I will get the scoop.

Happy Thangsgiving Chronies!

I hope you get to spend time with family and friends. I am excited to spend some time in Boston and the berkshires in Massachusetts with mine. Thanksgiving, after all is a word of action, so I would like to thank all of you for your support and dedication to this blog. I've made some wonderful contacts and learned a ton from you all. I am proud that I have been able to help some of you as well.

Don't eat too much turkey (for those of us lucky to be healthy enough) and watch your health.

Best regards,

Scott Roy

Crohn's, Immunosuppressants, and H1N1 Flushot Vaccinations

I have had some people on immunosuppressants to control Crohn's disease, if they should receive the H1N1 vaccination in shot form, or as a nasal mist. From what I am reading, you should absolutely get a shot, as he live virus in the nasal mist is too much of a risk to children and young adults whose immune systems are not fully functional.

From the suncoast news:

Infants to young adults are among the most likely to contract swine flu and should be vaccinated against the H1N1 virus, public health experts say. But what about people in this age group who are taking immunosuppressant drugs to combat chronic health problems such as Crohn's disease, asthma, HIV and rheumatoid arthritis?

The answer, according to doctors at the Nationwide Children's Hospital, is yes, but with a caveat: children and young adults taking immunosuppressants should receive the H1N1 vaccine via injection, not the nasal mist.

"It is extremely important that they get the H1N1 vaccine and receive it in the form of a shot, rather than in the form of a mist," said Dr. Dennis Cunningham, an infectious disease physician and medical director of epidemiology at Nationwide Children's Hospital, in Columbus, Ohio, referring to patients on immunosuppressant medication.

Cunningham and his colleagues prefer the injectable form of the H1N1 vaccine because the mist vaccine contains live swine flu viruses.

"We do not want kids whose immune system is already weak to receive a live virus," Cunningham said. "Immunity to the H1N1 flu, among other diseases, is very important for kids with chronic conditions."

Cunningham, who is on the faculty of the Ohio State University, is leading the anti-H1N1 efforts at Nationwide Children's Hospital.

The federal Centers for Disease Control and Prevention have declared all people from 6 months to 24 years old to be at high risk of contracting swine flu. There are thought to be roughly 5 million children and young adults in the United States taking immunosuppressant drugs to control chronic health problems.

An H1N1 vaccination is not a guarantee that young people with suppressed immune systems will come in contact with the swine flu virus. To further protect them doctors recommend a "ring vaccination." The term refers to having parents, siblings and others with whom young people on immunosuppressants come in regular contact vaccinated as well.

Even so, children on immunosuppressants who have had an H1N1 vaccine injection and are inside a ring vaccination are still at risk when outside the home because people they come in contact with night not have been vaccinated.

Crohn's Sufferers - Did You Use Accutane?

Thankfully most of my skin problems were a result of Crohn's (THANKS PREDNISONE!), but if you have Crohn's, it could be because you used Accutane. Which also means you could be getting paid large!

Ennis & Ennis, P.A. announces today it is still investigating and accepting Accutane cases against the manufacturer of the drug Hoffman La-Roche. David Ennis states, "although Hoffman La-Roche announced in June 2009 that it will no longer sell Accutane due to generic competition and large legal costs defending the drug this does not absolve La-Roche from liability from patients who took the drug in the past and have suffered Inflammatory Bowel Disease (IBD), Ulcerative Colitis and Crohn’s Disease". Ennis went on to state 6 juries in New Jersey have ruled in favor of plaintiffs in excess of $33,000,000 in damages finding that the company did not adequately warn of the side effects associated with IBD, Ulcerative Colitis and Crohn's Disease. Ennis believes that there are thousands of patients who suffered from these side effects and are not aware it was due to Accutane use.

Ennis & Ennis, P.A. is also investigating and accepting cases against the generic manufacturers of Isotretinoin which is the generic name for Accutane. The generic versions of the drug are Sotret, Claravis and Amnesteem. Ennis states, "The generic drug makers have the same duty to warn as La-Roche, but they have chosen to use the same label as La-Roche which is a head in the sand approach. It is amazing to me that based on the court findings and evidence presented at trial which is now in the public domain the FDA has not stepped in to require a Black Box warning."

Ennis & Ennis, P.A. has been accepting and investigating Accutane cases since 2003. Ennis & Ennis, P.A. continues to offer free legal consultations to all users of Accutane and Isotretinoin that may have developed IBD, Ulcerative Colitis or Crohn’s Disease. Potential victims can call toll-free 1-800-856-6405 or go to http://www.ennislaw.com or http://www.the-accutane-lawyer.com and fill out a free online case evaluation form.

Ennis & Ennis, P.A. is a nationwide law firm with offices in Ft. Lauderdale, Miami and Washington D.C. Ennis & Ennis, P.A. specializes in mass torts and represents individuals against pharmaceutical companies worldwide as well as medical device makers.

Aw Crap, Not Skin Cancer - Immunosuppresive IBD Meds Linked to Skin Cancer

Aww crap. Crohn's is bad enough. Not only do we have a higher chance of getting colon cancer, but now we have to wear even more sunscreen. It is not good being a surfer with Crohn's!

MONDAY, Oct. 26 (HealthDay News) -- Inflammatory bowel disease (IBD) patients who are being treated with immunosuppressive medications may be at increased risk for non-melanoma skin cancer, a new U.S. study says.

Researchers analyzed data on 26,403 Crohn's disease patients and 26,974 patients with ulcerative colitis in order to evaluate how the use of immunosuppressive and biologic medications to treat IBD affected non-melanoma skin cancer risk.

The study found that the incidence of non-melanoma skin cancer was higher in IBD patients than in a control group. Recent use (within 90 days) of any immunosuppressive medication was associated with greater risk of non-melanoma skin cancer (adjusted odds ratio 3.28), as was recent use of the thiopurine class of immunosuppressive medications (adjusted odds ratio 3.56) and recent use of biologic medications in Crohn's disease patients (adjusted odds ratio 2.07).

Persistent use of any immunosuppressive medication, which was considered use for over one year, was strongly associated with non-melanoma skin cancer (adjusted odds ratio 4.04), the study authors noted. The association was even stronger with persistent use of thiopurine medications (adjusted odds ratio 4.27). In Crohn's (not Chrones, crones, chron's, chrones) disease, persistent use of biologic medications was also associated with a raised risk (adjusted odds ratio 2.18).

"The increased risk of [non-melanoma skin cancer] in patients with IBD is likely related to the immunosuppressive medications used to treat the disease, although we can't rule out changes to the immune system itself as a result of IBD as contributing to this risk," said study leader Dr. Millie Long, of the University of North Carolina at Chapel Hill.

"In patients on immunosuppression therapy after organ transplant, previous studies have shown a clear association with [non-melanoma skin cancer]. Other studies have demonstrated that azathioprine, which is in the thiopurine class, can increase the photosensitization of human skin," she noted.

Long concluded that the study "demonstrates that patients with IBD on immunosuppression may also be at risk for [non-melanoma skin cancer]. As a result, our long-term management plans for IBD patients should stress the daily use of broad-spectrum sunscreen and increased awareness of [non-melanoma skin cancer] to help to prevent complications."

The study was scheduled to be presented this week at the annual scientific meeting of the American College of Gastroenterology, in San Diego.

A New David Garrard Crohn's Disease Article

From thetelegraph.com

When David Garrard was 5 years old, he fell in love with football. After watching older brother Quincy practice with his team, David knew that’s what he wanted to do when he grew up.

Garrard became a star quarterback for Southern Durham (N.C.) High School, and earned a scholarship to East Carolina University in Greenville, N.C.

While at ECU, he led the Pirates to consecutive bowl berths, including the memorable GMAC Bowl in 2001.

The Pirates blew a 38-8 halftime lead over Marshall, and its quarterback Byron Leftwich. The Thundering Herd stormed back for a 64-61 double-overtime victory – still the highest scoring bowl game in NCAA history.

When the Jacksonville Jaguars drafted Garrard in the fourth round of the NFL draft, his childhood dream had become a reality.

He was the No. 3 quarterback, behind incumbent starter Mark Brunell and his GMAC Bowl game nemesis, Leftwich.

Garrard played in just six games during his first two seasons. Then in the spring of 2004, his NFL career nearly came to an abrupt end.

Garrard had been complaining of stomach pains, but figured it was just an upset stomach. When the pain persisted, he saw the team doctor.

The diagnosis he received was an unexpected one.

Garrard had Crohn’s Disease, an ailment he didn’t fully understand.

"A lot of times it takes an individual many years to figure out what it is," Garrard said. "If you’re not having true signs or symptoms you can kind of write it off as irritable bowel. Luckily for me, I was able to get treatment right away."

Crohn’s disease is a form of inflammatory bowel disease, which involves chronic inflammation of the gastrointestinal tract because of an overactive immune system. It’s an often-misdiagnosed disease, and if left untreated can become fatal, as the body doesn’t get the nutrients it needs to function.

Garrard approached his battle against Crohn’s like any other opponent.

"I wanted to defeat it," he said. "I couldn’t let Crohn’s take over my life. A lot of pro athletes think they’re invincible. This brought me back to reality. It gave me a gut check, literally."

His family was also confused, and began researching the illness immediately.

"They were very shocked and concerned because I’ve always had a clean bill of health," Garrard said. "Then I get diagnosed with Crohn’s, a disease they had never heard of. They tried to figure out everything they could do, research-wise."

Garrard, his two older brothers, Anthony and Quincy, and their younger sister, Adrian, had lost their mother to breast cancer in 1992, and were not going to let this disease take another member of their family.

Along with Garrard’s wife, Mary, his siblings found spiritual treatments, holistic treatments and all natural herbs as remedies for their brother.

"They were like, ‘We’re going to throw as many things at this that we can,’" Garrard said. "Maybe there’s something out there than can work. To already have lost one family member as important as our mother was, they just didn’t want to go through that again."

Garrard had a painful flare-up in April of 2004, and noticed blood in his stool. He required surgery to remove some of his intestines, which were blocked because of scar tissue.

"It can be very painful, especially in a full-blown flare-up," Garrard said. "Nothing passes through. You’re not able to get nutrients, and have to get a feeding tube. With that scarring, it’s hard for it to be removed without surgery. Some people have to resort to colostomy bags if it gets too bad."

Since his diagnosis, Garrard has become a spokesman for the battle against the painful disease, and the drug company Centocor began donating $10,000 for every Garrard touchdown last season. Centocor is the manufacturer of Remicade, the medication Garrard said has kept him symptom-free since 2004.

Garrard has six touchdowns this season following 17 a year ago. To date, Centocor has donated $230,000 through Garrard’s "In the Zone for Crohn’s" foundation to the Crohn’s and Colitis Foundation (CCFA).

"We need to increase that, and keep it going," said Garrard, whose Jaguars play host to the St. Louis Rams on Sunday. "Hopefully we can get a cure to this disease. It affects a lot of kids, and the kids are the ones who are having the hardest time because in school, they have to deal with a lot. Other kids don’t understand what they’re going through. I’m trying to do as much as I can."

Garrard said the stomach pain associated with Crohn’s is much worse than anything he’s felt on the football field.

"It’s not like aches and pains of a football game," the eight-year veteran said. "Those I can deal with. The Crohn’s pain is definitely tough."

Garrard has also taken an active role in raising awareness of the disease, educating the public, and increasing funding to find a cure. He has traveled across the country, visiting Camp Oasis regional camps for children with Crohn’s disease and ulcerative colitis. He has also started a local chapter of the CCFA in Jacksonville.

Garrard saw action in just four games in the 2004 season, but considers himself fortunate that his flare-up occurred in the offseason. He said the disease drained him of his energy because his body wasn’t utilizing the food he had eaten.

When the Jaguars decided to name Garrard as the starting quarterback before the 2007 season, it raised some eyebrows.

Leftwich had been the team’s No. 1 quarterback since the end of the 2003 season, and remained as such entering 2006.

But when Leftwich went down with an ankle injury in week six of that year, Garrard took over. He was not flashy, but efficient in guiding the Jaguars to a 5-5 split the rest of the year.

Then came 2007, when Garrard threw an NFL-low three interceptions, was third in pass efficiency, and the Jaguars went 11-5 to earn a playoff berth.

Garrard missed four games that season with an ankle injury, but came back in 2008 to start all 16 games. He became just the second Jaguars quarterback to start all 16 games in a season. The Jaguars saw their wins dip from 11 to five, but Garrard said being on the field for every game allowed him to prove his durability.

"It actually felt good because I had heard that no Jaguar quarterback other than Mark Brunell had ever started all 16 games," Garrard said. "I’ve never really been a guy who’s had a lot of injuries, and I wanted to show that I can go through all 16 games, and lead the team. But I’d take a few games off for a winning season."

The Jaguars are in the same position they were a season ago, sitting at 2-3 after five games. They beat Denver in week six of the 2008 season, and will try to even their record Sunday against St. Louis. What Garrard hopes to avoid this year is the tailspin that sent them to a 2-8 finish last season.

"I wish I could put a finger on what happened," Garrard said of last season. "We just didn’t play as well as we could, and our record showed it."

Coming off what Garrard called an "ugly" 41-0 loss to Seattle, the Jaguars now prepare for the winless Rams. He said it’s business as usual.

"It’s just like any other work week," Garrard said. "It’s the NFL. You’re not going to dominate a team, and you have to be prepared. No team wasn’t to be another team’s first win. Every team is going to fight you tooth and nail to the end. We have to show up prepared and execute our game plan."

Sunday’s start will be the 22nd consecutive for Garrard, whose career nearly ended before it ever really began.

Keywords: NFL quarterback with Crohn's Disease, NFL players with Crohn's Disease, David Garrard Crohns, David Garard Crohn's, chrones, crones, cronhs

Is Crohn's Disease Genetic? New Study Thinks so...

This is a popular topic....is Crohn's Disease Genetic? It is the first question every parent that has a kid with Crohns Disease or prospective parent with Crohn's asks....I know I did. Here is a new article that I just saw on WebMd --

A gene variant common in whites is linked to Crohn's disease, an intriguing new study suggests.

Crohn's disease is an inflammatory bowel disease (IBD). In IBD, the delicate balance of the gut ecosystem is disrupted by an excessive inflammatory immune response.

People who carry the gene variant make less of an inflammation-dampening enzyme called CD39. This may tip the immune balance toward IBD, suggest David J. Friedman, MD, of Beth Israel Deaconess Medical Center, and colleagues.

"Our data indicate that CD39 [gene variants] are associated with inflammatory bowel disease in humans," the researchers conclude. Their report appears in the Sept. 29 issue of the Proceedings of the National Academy of Sciences.

The researchers fed mice a chemical that gives them IBD. Specially bred mice lacking the CD39 gene had worse IBD than mice with a normal version of the gene.

All humans have a CD39 gene. But some have a version of the gene linked to lower CD39 levels. Friedman and colleagues identified a genetic marker for low CD39 production. They then looked for this marker in 1,748 patients with Crohn's disease and in 2,936 people without IBD.

They found that the genetic marker was significantly more common in people with Crohn's disease. Moreover, people without IBD were more likely to carry two copies of the high-CD39 gene, while those with Crohn's disease were more likely to carry two copies of the low-CD39 gene.

Genetics are not destiny. Not everyone with the low-CD39 gene has or will have IBD. Even having two copies of the gene only increases a person's risk of Crohn's disease by 27%.

But since about 40% of whites of European ancestry carry at least one copy of the gene, its effects across the entire population should be quite large.

Moreover, the gene may affect more than IBD. It's also linked to kidney disease in people with diabetes and to blood clots in the arteries.

The researchers plan to perform more extensive studies of the role of the CD39 gene in IBD.

David Garrard - In the Zone for Crohn's Disease

Centocor and David Garrard, quarterback for the Jacksonville Jaguars will continue the In the Zone for Crohn's program this football season to raise awareness and provide funding for Crohn's disease research, education and support. Last year, In the Zone for Crohn's raised $170,000 for the Crohn's & Colitis Foundation of America.

Centocor Ortho Biotech will again make a donation of $10,000 to the CCFA for each touchdown Garrard scores, passing or rushing, during the 2009 NFL season.

"I feel fortunate to be able to bring even greater awareness to this often misunderstood condition," said David Garrard, quarterback of the Jacksonville Jaguars. "Through my play on the field and by speaking out on my condition, I hope to continue to further educate the public and be an example to others who are living with Crohn's disease."

The program will kick off with the Jaguars' first game of the season on September 13 and will culminate at the end of the 2009 season. A contribution will be donated to the CCFA based on Garrard's total touchdown performance. The In the Zone for Crohn's program kicked off during the 2008 season. By the end of the season, Garrard helped raise $170,000 for the CCFA through his play on the field.

What other Crohn's Disease sufferer has done this? David Garrard scored nearly 50 touchdowns over the past three seasons for the Jaguars. David Garrard is entering his third season as their full-time starting quarterback.

About David Garrard
David Garrard knows first hand the painful, debilitating and often embarrassing effects of Crohn's disease. Prior to the 2004 football season, Garrard began experiencing the excruciating symptoms associated with the disease, lost a significant amount of weight and missed several weeks of pre-season training. Following his diagnosis, David underwent surgery and, in consultation with his doctor, began a treatment regimen. David returned to the playing field by the start of the 2004 season and in 2007 led the team to its first playoff win in eight years.



About Crohn's Disease
Crohn's disease, a chronic inflammatory disease of the gastrointestinal tract, affects approximately 500,000 Americans, including approximately 100,000 pediatric patients. The cause of Crohn's disease is not known, but the disease is associated with an abnormality of the immune system that could be triggered by viral or bacterial infections, a genetic predisposition or diet. Symptoms of Crohn's disease can vary but often include abdominal pain and tenderness, frequent diarrhea, rectal bleeding, weight loss and fever. For those that ask is there a cure for crohn's disease, There is currently no cure for Crohn's disease.

Hynotherapy For Crohn's Disease

Anyone tried this?? I guess it makes sense considering it can reduce stress, one of the biggest causes of Chron's Flares.

Hypnotherapy has long been used to help people cope with stress. No matter what the source of stress is, hypnosis is a relaxation technique that calms the mind and body into a deeper state of relaxation. Research has shown that when stress is a contributing factor in a physical or physiological situation, hypnotherapy helps reduce symptoms associated with that ailment. Studies show that hypnotherapy is very beneficial in treating people with Crohn's disease.

Crohn's disease is an inflammatory bowel disease. It affects about 2 to 7 in 100,000 people. The disease can be quite debilitating and sometimes life threatening when symptoms are not controlled. It causes the digestive tract to inflame and can cause severe abdominal pain, malnutrition, and diarrhea. Unfortunately, there is no known cure for Crohn's disease. Instead, symptoms must be treated, for example with hypnotherapy, and people with the disease can live a long life with their symptoms under control. According to the Mayo Clinic, stress does not cause Crohn's disease, but it can cause symptoms to worsen or cause a flare up.

According to the University of Maryland Medical Center, there is no way to prevent Crohn's disease, but managing the symptoms is possible through diet, lifestyle changes, and alternative therapies. The main goal is to prevent flare-ups and to remain in remission as long as possible. People with Crohn's disease have reported that stress makes their symptoms worsen. Relaxation techniques are very helpful in reducing the symptoms of Crohn's disease. The University of Maryland Medical Center also promotes the use of hypnotherapy because studies have been shown that it improves immune function, decreases stress, increases relaxation, and eases feelings of anxiety.

A study conducted in Europe included 266 participants with Crohn's disease. The researchers found that hypnotherapy and psychotherapy improve the treatment of the disease. The study found that emotional conflicts such as stress, depression, and anorexia effect the transgression of the disease. Relaxation techniques used in hypnotherapy and psychotherapy were found to give patients greater control over their symptoms.

More research is finding that there are links between stress and physiological diseases. There is a direct link between emotional stress and Crohn's disease flare-ups. Alternative therapy such as hypnotherapy, psychotherapy, yoga, and meditation has been shown to improve the overall well-being of Crohn's disease sufferers. Since there is no known cure for Crohn's disease, alternative therapies are highly suggested to help people control their flare-ups and remain in remission. Hypnotherapy promotes relaxation and puts the Crohn's disease sufferer in control of their symptoms in a safe and natural way.

Sources

Crohn's disease. Mayo Clinic. Retrieved August 21, 2009 from http://www.mayoclinic.com/health/cr...

Crohn's disease. (2008). University of Maryland Medical Center. Retrieved August 21, 2009 from

Osiris Prochymal - Crohn's Disease and Stock Update

As I have mentioned quite a few times, Osiris Prochymal has all but put my Crohn's in Remission. Because of that I pay attention to Osiris. I am not sure what the exact status of their stem-cell trial for Crohn's is, but if you can look into it, I recommend you see if it is right for you. I will work on an update on the current trials available for Prochymal and Crohns.

Shares of Osiris Therapeutics Inc. (have appreciated as much as 20% over the past five days as traders and investors are placing their bets ahead of the impending release of late-stage trial results of the company's stem cell drug candidate, Prochymal. The stock is currently trading around $14 as of this writing. Osiris Therapeutics got a drubbing on Wall Street in March, when it suspended trials of its pill for Crohn's disease, citing an "unusually high" response to placebo.

Prochymal is an intravenously administered formulation of mesenchymal stem cells obtained from the bone marrow of healthy adult donors and is designed to provide therapeutic benefit by controlling inflammation, promoting tissue regeneration, and preventing scar formation.

Prochymal in Crohn's disease

As recently as March 27, Osiris stopped enrollment in a phase III study, which is testing Prochymal as a potential treatment for Crohn's disease due to a systemic design flaw in the trial. Shares plummeted 31% to a low of $12.62 that day following the news. The data from the trial is expected to be used in redesigning future studies.

One of the Best Crohn's Disease Articles I've Ever Read - Thanks Esquire Magazine

Full Esquire Article at - http://www.esquire.com/print-this/chrons-disease-diet-0909

This feels so illicit. And stupid. But really, I must lick this french fry. I'm not asking to eat it, mind you, that wouldn't be good. I just want to lick it. Taste its salt. I cower in the kitchen, hiding from my wife and boys, who are out there, on the other side of the door, enjoying a sumptuous dinner, like eaters do — devouring what's delicious, picking at what is not, saving room for dessert — while I starve.

Yes, I'm starving. There's been nothing for two months now. No food, no drink, nothing in my mouth except the air I keep sucking. It would be plain to say the hunger is driving me mad, because it is. I crave food more than sex. The smell and touch of food can drop me to my knees. Food left me suddenly, in the chaos of emergency surgery, and, empty of food, I think about it constantly, an obsession that magnifies the ordinary into the surreal. A simple french fry is a wonder, an uneaten crust of bread salvation; something as unattainable as a fried egg, life itself. This trance is not healthy, or normal, but then those two words have also left me suddenly. Nothing I can do will fill my empty gut and conquer the hunger, and, equally, there is nothing to be done by anyone else. There is no way to share the pain or accept relief, which has a way of driving away people and their best intentions, discouraged by the frustration of their uselessness.

At mealtime, tonight for instance, I unpack bladders of laboratory-made nutrients that substitute for food and fill syringes, priming the pump that shoots the food bag full of fortifiers into my vein to keep me alive. But nothing in that bladder relieves the hunger.

Meanwhile, for the eaters in my house, my wife cooks a plate of minihamburgers and french fries. The apartment's windows are shut against a chilling rain, and the place is overpowered by the smells of the local diners I dearly miss. She and our two boys eat at the dining table at one end of the living room. The table is set with candles and a blue glass bowl of precious winter fruit. My customary end chair is unoccupied; I sit on a worn leather love seat at the opposite end of the room, keeping company with the food pump. For the first meals after I was home from the hospital, I tried joining them at the table, a happy-meal family, but my starving presence disturbed the kids, and I've been marooned on the love seat or exiled to the bedroom ever since. The silver-dollar-sized burgers and petite seeded buns excite the boys, and they yammer with mouths full of food, their speech garbled by chewed meat and bread soaked in warm juices. One after another the patties fall, cutting down the pyramid of sliders, and I can only watch and listen as the plate gets swept clean. Our six-year-old kneels and turns on his chair. He has taken a momentary break from the carnage, his mouth a juicy mess, and he trains me with a severe look. "When will you eat?" he demands in a voice complicated by vulnerability, the worry that afflicts all children whose parents get sick. "Soon," I lie. "Tell me about the burgers." It's a lame attempt to take his mind off the skeleton before him. "Do they remind you of White Castle?" I ask. This is met with silence, and I realize the boys have never been to White Castle. There is nothing for them to be reminded of. Nothing for them to miss. They look at me blankly and then go right back to savoring the food like lions on a carcass. The plate's empty.

"Mom, these are so good. Can I have more?" our ten-year-old breaks in. He's generally a picky eater, but not tonight. On her way to the kitchen to replenish, my wife regards me with a silent, sorry look. After everything they've had to put up with, their lives frightened and made insecure by my health, I should be pleased by the sight of their shared simple pleasure. But I am too far withdrawn into the abyss of my gut, plagued by the dismal reality of moment-to-moment desperation. When she comes back, I slip into the kitchen and leave the carnivores to their assault. Pressing out of view, tight against the warm stove, I touch a fallen nest of fries scattered on a baking sheet with all ten fingertips. They are crisped and stinging hot to the touch. I pick up a handful, bring it to my nose. Food has not passed my lips for sixty days, and the oiled, salty fries make me dizzy. I bring one to my mouth. I lick it. The texture is bewitching — coated and crunchy as I had fantasized — but the salty taste that should open in the mouth is frustratingly absent. I lick again. Nothing. I bite off a piece and nestle it into my tongue, sucking for salt. Absolutely nothing. My tongue is as shiny smooth as a porpoise.

My taste buds are gone.

I spit the mangled potato into the trash. Just then, my oldest walks in, catching me midspit. "Dad, you're not supposed to eat," he scolds. The food police, they come in all sizes. "I didn't eat!" I say, aware of my brittle and defensive tone. "Really, sweetheart," I say, softening, trying to sound more dadlike, more like the man I was before the hunger came to stay.

The boys were at school and my wife was teaching, unreachable in her windowless bunker, which blocks cell-phone reception. Me? I was writhing on the rug in the living room, very surprised to find myself suddenly dying.

Bright sun smoked through the room's dirty windows and smacked me blind. I'd let go of the thermometer, which registered 106 degrees, dropped it to the floor, where it lay next to the phone I'd used for three ambulance calls and to wail to my gastroenterologist, "It feels like a blockage but worse! Like something has ruptured!" I'd known this because I am sick with Crohn's disease, a chronic illness of the small intestine that generally is merely debilitating, but now was just going to murder me. The room was rattling, pounding, the cockpit alarms all wailing. I was going down.

Voices entered through the fever dream, got closer, over me, shouting. Somehow, I was then in a hospital, in a room filled with different light, stark and white. Light boxes lined the walls of this room, and below them a ring of computer stations that suggested a command center, like a movie set of a spaceship. CT scans of my ruptured gut filled one wall. A surgeon stood with her back to me studying X-rays, tiny in the spacey void of the chamber. She said her name was Gandhi, which in my haze seemed ridiculous, and gestured dramatically at the milky loops of my insides.

"A stool blockage formed in your small intestine and tore a perforation in the intestinal wall. Since the moment the perforation opened the small bowel, bacteria has been pooling in your abdomen, causing peritonitis. It's an unusual scenario, and if we delay, there's a high risk of sepsis developing from the bacteria flooding your abdomen. You don't want that. It could be fatal. We have to operate immediately."

A stool blockage? Undone by my own shit. A fitting epitaph.

NPO is an abbreviation for the Latin phrase nil per os, which translates roughly as "nothing by mouth." For hospital patients, an NPO order is a condemnation. It translates to wasting away on an intravenous drip while your roommate bitches about the vulcanized chicken on his tray. I have been NPO since the operation. No one is NPO for sixty days — at least no one ought to be. It wasn't supposed to work out this way. Two days after the emergency surgery, I calculated as imminent the arrival of the awakening gurgles of motility that delight both colorectal surgeons and their starving patients. Passing gas would license the doctor to unthread me from the catheters and tubes that probed from end to end and introduce the first swallows of an initially liquid diet. From there it would be a short GI walk to the holy grail of peristalsis: smooth-muscle contractions that propel food distally through the esophagus and intestines. Man, that's poetry!

But it never happened. Infections, abscesses, and, most serious, a fistula formed around the surgical area, preventing digestion. The only method of healing was to put the stomach to sleep until it organically closed its holes, like a patched garden hose. After two difficult hospital stays, I am home, again, enduring the deprivation of NPO. Down thirty-five pounds from my presurgery weight, I have become the Man Who Couldn't Eat, which was kind of funny before it seemed quite so goddamn literal. And permanent. I look at my cadaverous figure in the bathroom mirror, the open surgical wound a monstrous red hole cratering my stomach, and am stunned to see Sid Vicious in his last days at the Chelsea Hotel.

I look deeper. A funny thing about total food deprivation is that everything, and I mean everything, conjures food. Even when you don't see it coming.

"Jesus Christ, why is Thompson Lake carved into me?" I ask the mirror. The brutality of the surgery left a gruesome gash, eight inches long and two inches across. Oblong, asymmetrical, narrowed at the ends with a small pond orphaned in the north by a causeway of skin, a pool bulging in the middle, the scalpel's outline copied the topographical form of our lake in Maine, as charted on the map hanging on my sons' bedroom wall. That ten-mile body of water was glacier-formed twenty-five thousand years ago and, like the fistula in my gut, has yet to close. Thompson Lake is our escape, the valve that releases the pressure of daily life upon arrival. It's also the place where the outdoor grill awaits, and as I prop against the sink framed in the bathroom mirror, I am suddenly there. Boxed in our city kitchen for most of the year, I yearn for sparkling summer and my station at the grill. Because greatness comes from that grill. Shrimp, scallops, clams, fresh lobster, peppers, sugar and gold corn, burgers chocked with onions, Katz's franks by the pound driven up from New York. Me in my Katz's apron, tied around like the cutters behind the tall glass counters. Katz's Deli! When I was a kid, my father and I would make a special trip down to the Lower East Side to provision for the lake, and as an excuse to split a hot pastrami lean on club, a sandwich big enough to feed our entire family for generations, the mountain of briny, smoky brisket, dripping with spices. Standing under Katz's hanging salami chandeliers, we'd count the linked dogs as the counterman layered them in sheets of brown paper and spooned pints of spicy mustard into old yogurt containers. The smell of the place was like nothing I'd ever known, a century of smoked meat permeating the air, a lusty Jewish kitchen smell that filled our station wagon as we made our way up to Waspy Maine to feast all the summer long.

Now, whatever the meal, opening the grill's heavy lid and releasing the magic of smoke and the smell of dinner makes us all giggle like idiots. Glass of wine in one hand, burnished spatula in the other, my trunks dripping from a quick swim while one side of the fish grills — that's Thompson Lake. It is the retreat we have been escaping to since my grandfather hitchhiked there as an unemployed Depression kid in the summer of 1930. However, stamped as it now is on my gut in permanent ink, the image has a different connotation altogether, and my reverie is suddenly broken. Gray in the mirror, I am a starving man. My stomach paralyzed by inertia and medicine, the hunger rages not there but in the middle of my head. "Let's face it," I say into the mirror, "you'll never see Thompson Lake again." I tie my robe around myself to cover the wound, and shut off the light.

TPN sustains me, allegedly. Total Parenteral Nutrition is the laboratory name of the mixed bag of nutritional fluids that filter into me. The therapeutic solution is pumped by a battery-operated machine through an umbilical cord of plastic tubing — a PICC line — that has been inserted into a vein in my left triceps and runs into my chest, where it doles out the soup. I run the TPN pump fourteen hours a day, plus there's another four hours of medicinal octreotide and saline solution dripping from bags hung on an IV pole. Our peaceful bedroom has been stocked like an infirmary. The same minirefrigerator that sat in a corner of my college dorm room, stuffed with Michelob and hash brownies, is now stuffed with bladders and vials of thiamine, folic acid, famotidine, and insulin — the ingredients that fortify TPN. TPN is complex. And expensive. The 3,000-milliliter bag of solution, a slippery five-pound load constituted of a base formula of dextrose, Travasol, Intralipid, selenium, chromium chlore, and a dozen other chemical essentials, runs $800.

In no way can TPN be confused with actual eating. Pulling on rubber gloves and laying out potions and needles on beds of sterile wipes across my living-room table, I feel more like Owsley Stanley producing kitchen-clean LSD for the Merry Pranksters than the passable cook I used to be.

All the moving parts and the TPN feed bag reside in a backpack, slung over my shoulder like a nylon hump. The programmable pump is about the size of a jumbo foundry brick and weighs as much as two. The pump's motor, scarcely muffled by the backpack's casing, grinds in continuous cycles of whirs and clicks, parsing the thin white stream of medical milk juicing me from 4:00 P.M. to 6:00 A.M. My freighted movement from bed to toilet to living-room couch is accompanied by a continuous-loop soundtrack, and the ceaseless engine racket is a loud party to conversation, television watching, sleeping. Often, I am humiliated into leaving the room.

As I get pumped on the overnight shift, the groaning backpack rests on a night table next to my pillow, tying me down in a single position in bed. When I roll over in my sleep, I am awakened by gear crashing to the wood floor. But I don't often sleep long enough to roll over, as hourly my bladder fills to bursting and I wake, dragging the pump to the bathroom. The endocrinologist who cooked up the TPN routine says that's just the way my body is reacting. Everybody's different, and there's "nothing to be done." I haven't slept more than an hour straight since the surgery.

Food never did this to me.

This evening, I put off the sweating-and-pissing marathon and watch TV alone in the living room. On Charlie Rose, Ferran Adriá, the celebrated Spanish chef of El Bulli, is a guest, animated by his philosophy: "Eating is the most intense experience in the world. There is no other creative moment that uses all five senses," he says. "Breathing and eating are the only things that we do from the moment of birth and for the rest of our lives." He explains that human beings have a complex relationship with food — their previous experience, the context of eating, of memories, of traditions, associations both regional and personal.

In this room illuminated by the bright image of the talking chef, his declarations penetrate the gloom with profound insight. NPO has eliminated more than simply the mechanics of eating. The day-to-day cooking, shopping, and nuclear-family integration that defines my caretaker role has been put in suspended animation, along with the dinner-date prospects that permit my wife and me to remember why we married each other. Food has been a partner in the substance of life, making and filling the experience. This medieval "therapy" has neutered my identity. My clothes hang like slack sails in a dead calm. I live in a pair of black elastic-waisted running pants to camouflage my shrunken physique.

I feel the Spanish chef pass through the screen and deliver his words directly to me. Yes, "breathing and eating," I hear you. As a side effect of the physical illness, I am plagued by this cognitive myopia, a condition that further isolates the patient and aggravates unfortunately proximate loved ones. Aside from exhausting people's patience, this warped perspective makes it difficult to distinguish what's meaningful from what's merely self-indulgent. Deranged by hunger, without the filters of reason and moderation, I have received messages from many unlikely sources. Listening to an old Bob Dylan song I have heard a hundred times, the line "I've got a hole where my stomach disappeared" jumps from the speakers like divine prophecy. Testify, Bobby. I come upon a rerun of the creaky episode of The Odd Couple in which Felix and Oscar starve at a fat farm. The shameless peppering of borscht-belt jokes strikes me as deep wisdom. I've got to get out of the house.

I drift back to Ferran Adriá, whose kitchen eloquence continues elevating the properties of food. I suppose this isn't surprising coming from a chef. You might not expect the same food-centric worldview from, say, an actuary, but I believe the resonance of the great man's message goes beyond my egomania. In fact, the chef's philosophical picnic falls short of assessing the complicated impact that food is having in my household. My polarity between despair and hope is roused by the nightly parade of food coming to our door.

A group of dear school parents, neighbors, and old friends organized themselves immediately after my surgery and channeled their collective desire to help into a wonderful service: home-cooked meals-on-wheels. Creating an online meal calendar, they have been volunteering daily to cook and deliver dinner and dessert to our home, skewering the myth that city folk are hard and uncaring. Roast chicken and French beans. Penne in red sauce and turkey sausage. Lamb stew. For my wife, this kindness has been a godsend, saving the family from a spiral into takeout and junk. In the hospital, I was lifted by the dedication and compassion of this treasured community of people. But, while it remains salvation for the house's eaters, for the starving among us the generosity of spirit baked in the bounty is ruined by my ravenous cravings.

Earlier, I languished at dinner, cuffed by the incessant TPN pump on the love seat, while across the room my family chewed on the gift of another well-made meal. A knock comes at the door, an upstairs neighbor, a woman whose exquisite brisket has actually compelled me to a Passover table. She enters the apartment carrying a chocolate Bundt cake that has been soaked in rum, spraying the air with an intoxicating allure. A few whiffs raise me to the kitchen, and I plow my nose down to the cake to inhale, anteater-style. Woozy on the fumes, I breathe deeper. Smell alone won't cut it, so I touch the wet cake with clumsy fingers, running them through dark chunks that crumble impossibly. It's like chocolate rain falling in a desert. Just as my wife walks into the kitchen, I plunge my hands into the delicious cake. I should be embarrassed, or at least try to hide what I'm doing, but I am too far gone. A sensible person, she is stunned by the mess I've made, bothered by the violation of the family's dessert. "What are you doing?" she asks urgently and hushed, so as not to alert the kids in the next room, her face a disagreement of pity and scorn. I look at her, shake my head, shrug, and laugh weakly, the chocolate caking my hands like blood.

Selfishness is not an answer. Increasingly, it seems, we are closing in on the limits of our patience, with each other, with me, with my sickness, with my attitude. Chronic illness, always lurking, has become the handmaiden to my checklist of life's larger failures and what now seems like inevitable doom. But failure, desperation, defeat do not come naturally to my wife. My descent into the experience of food deprivation, my plummet into the Bundt cake, clashes with her innate optimism. The misery of my relentless hunger has contaminated her previously unshakable belief in our quest for happiness. Why did I destroy your dessert? Isn't it obvious?

Passing out in the living room after Adriá's rhapsody, I am revisited by a nightmare. There is an apocalypse that I alone survive, left unattended, damned to a torturous, suffering death. X-shaped towers like crossed hands congest the skyline of my subconscious, bladed at their sheared edges, quaking and colliding into each other in a deafening cacophony. As I walk empty streets, there is no sign of life, no people, no food to be had. Fires erupt. Lost among the unfamiliar ruins, I stand at the center of a decimated intersection, its crumbled pavement collapsing beneath me. There is nowhere for me to go. As far as can be seen, the landscape is a charred mountain range of rubble, like in the pictures of firebombed Dresden. An eternity of starvation seems a certain fate. Then, there is movement. From behind the corner of an adjacent building shell, a figure appears, tiny at first sight but gaining size as it approaches. I am stuck in the crushed pavement, unable to free myself as the figure nears, then closes in on me, striking me with violent blows, bloodying my broken body. I awake screaming like a siren. The TV is still blaring, and I shut it off, reducing the room's light to the squares of ambient nighttime glow smearing the windows. I long for a cold drink to shake off the nightmare. Instinctively, I stagger to the kitchen and open the refrigerator. The door is heavy, loaded with bottles and jars. I see the shelves for the first time in months. They are double- and triple-stacked with intact meals and leftovers, filled so deep that the refrigerator's interior light is shaded. A golden-hued cheesecake almost tumbles off its perch, and I feel something like the sting of a phantom limb. I grab the pitcher of water and bring it to the counter to pour. But then I remember. It goes back in, and I return to the couch, shaken, drenched in the murk of TPN, filling with expensive piss.

After the dream's first visitation, in the hospital, I was visited by a staff psychiatrist. "Are you a threat to yourself?" he asked, getting quickly to the mandatory question. I didn't know how to answer. Even if I'd wanted to kill myself, I didn't have the strength, freedom of movement, or tools to do it. However, for the first time, I saw the imminent possibility of death, and the prospect of a family without me amid growing belief that they would be better off. My wife is young, beautiful, charming, and accomplished. My kids have everything ahead of them.

The mood followed me home. Shackled by the tyranny of NPO, of never eating, of never being liberated from chronic illness, I have surrendered to a reflexive litany of complaints and anger, directed mostly at my wife in belligerent attempts to validate my pessimism: You can eat; I can't. You feel healthy; I don't. You are alive; I'm not.

A lesson here: Solipsism is destructive. It has infected our marriage with an explosiveness that neither of us knows how to cure. On the kids' spring break, my wife escaped with them to her parents' house. A nasty fight sparked the night before their flight, punctuated by the kind of language that explains divorce. Apparently, I haven't been the only one contemplating the future of the family unit without me, and the scenario of our marriage failing has become conceivable, the endgame of degenerative distress. We have both been tried by these months of hunger, devoured by an emptiness no one expected.

We need food.

One Wednesday at 7:00 A.M., my gastroenterologist folds into an uncomfortable chair at the foot of the bed for our daily talk. Another bacterial infection formed in my intestine at the surgical wound and has landed me in the hospital. Immediately, the catheter was pulled and the TPN halted. Sustained by nothing but a saline drip for the past eight days, my body has whittled to a reed while the doctors determine what to do.

"I believe that surgery is becoming the only option, but it's still too soon. The disease has returned and is more advanced. The infection shows that. Your hemoglobin and protein levels have dropped again, but you can't go back to TPN with active infection. However, we've got to get you nutrition, even if it's just to get healthy enough for surgery."

"That's not the best prognosis I've ever heard," I say.

On cue, my roommate gripes across the divided room about his lousy breakfast, his hopes instantly undone by the first taste of charred coffee. "Oh, shit. This is worse than yesterday. Jon, you don't know how lucky you are."

"I know," the doctor answers me.

Grimacing, he deliberates and glances down at my chart. "I'm going to start you on food."

"How?"

"Liquids first, then softs, then solids. We'll see how you do."

"Meaning what?"

"Diarrhea, nausea, pain, fever. If there's a problem, I'll have to convince Dr. R — — we can't wait any longer for surgery. Hopefully, you'll improve."

" 'Hopefully, you'll improve.' Doctor, that doesn't exactly inspire me with confidence."

"We've got nothing left."

Ninety days in, I am eating again, though it is not the stuff of my fantasies. I still have no taste buds, the bristle of cells atrophied from neglect, and food passes in the absence of flavor. As an experiment, I've heaped dishes with vivid curry and saffron, but even they have failed to raise the dead. My stomach is also still entirely paralyzed. The induced coma of TPN and octreotide has left an absurd legacy: Now that I'm eating, there is no sensation of hunger or feelings of digestion or satiation. The entire eating process is anesthetized from tongue to gut. I can eat, but I can't experience it, as though I live, but my gut does not.

Toward the end of a wet spring, I submit to a follow-up exam. I drink the cups of barium, and the doctor takes dozens of pictures. At two o'clock he orders me to go get something to eat, then return for a final round.

"Living with chronic illness means living with uncertainty. That's the challenge. You have a choice: Either withdraw into yourself or move forward," he says. It's a difficult prognosis to accept. Accepting uncertainty requires ditching the denial that has seen me through for decades. It may also require adapting to chronic hunger, because the pictures will come back with mixed news: The fistula has healed, but the disease is active and intense.

But for the moment, food, real food, awaits.

There is a diner that over the years has become my chosen site for end-of-procedure bacchanalia. This is a friendly place, animated by the crash of conversation, plates, and smells, and I take the last open stool at the curve of the counter, in line of sight of glass cases glistening with apricot Danish and glazed doughnuts. The counterman, softly accented with reading glasses hanging from the V of an open-collared shirt, takes the order I make without consulting the thick menu. What do you want? We'll make it. In three minutes the oval plate is out from the kitchen, handed across the open top half of a Dutch split door. In his diary, Richard Burton, a man of considerable appetites, wrote of the pleasures of American short-order cooking that he discovered at the Excelsior diner, saying he preferred the instantaneous wonders of the griddle to anything cordon bleu. Sadly, the Excelsior, a charming dump I frequented for years, closed not long ago, a casualty of Manhattan's real estate madness.

I've done my part to keep alive the remaining joints but haven't been much in the fight recently. God willing, I am back.

I chomp into the wheat toast sandwiching layers of fried egg and bacon curls, chewing to exorcise the barium chalk coating my mouth. There is a trace of flavor in the bite. My reflection in the butter knife shows a patchy return of baby buds on my tongue. What I lack in taste, though, is mitigated by the sensation of the sandwich's texture. The combination of crusty toast and crunchy bacon congealed by the precisely cooked egg commingles in my mouth like a revelation. I am deliriously happy. I can taste it, or some if it; I'm not sure. And I don't care. Whether I will ever again feel food settling in my stomach is unknown. But if I can't much taste ever again, I will go forward feeling the food in my mouth. And over time texture will become taste. I slow to savor the sandwich, sipping orange juice like a baby, smiling at passersby, and disturbing the poor guy sitting next to me, absorbed in his Kindle, to announce that this sandwich is the best thing that's ever happened to me.

"Oh, yeah," he says, smiling indulgently. "You should try the meat loaf."

Twitter and Crohn's Disease

Not sure why this is newsworthy since I have tweeted about my Crohn's from the get go, but interesting I guess.....


KANSAS CITY, Mo. -- A Kansas City mother used Twitter.com to help keep friends and family informed during her daughter's surgery on Wednesday.

Shari Flanagan's 13-year-old daughter, Katie, underwent a new type of surgery for Crohn's disease at Children's Mercy Hospital.

During the three-hour operation, Shari "tweeted" about the experience on behalf of Children's Mercy so that other parents would get an idea about what was going on. It also allowed friends and family to follow along.


According to Children's Mercy, Katie is out of surgery and doing well. The surgery is expected to put her disease into remission.

Copyright 2009 by KCTV5.com. \

Effort Underway to Legalize Medical Marijuana in Florida

Crohn's Keeps popping up in medical marijuana articles..the lastest an article related to legalizing medical marijuana in Florida. Personally, I don't smoke marijuana (I won't say whether or not I did or didn't on a regular basis for a period of time), and I haven't decided how I feel about this. Maybe in a flare-up, but I would hope that semi-healthy Crohn's patients don't partake. For Crohn's sufferers, hey whatever works. Although i can't imagine how hungry someone on prednisone and smoking herb would be. Talk about the ULTIMATE munchies! Ugh.

A group of Floridians organized as People United for Medical Marijuana (PUFMM) has begun an effort to put a medical marijuana initiative on the November 2010 ballot, according to a report from PUFFM. The group needs some 687,000 valid signatures of registered voters in the next nine months to qualify.

The group is not affiliated with any national organization and says it needs $5 million for the signature gathering drive and the election campaign. Unlike more traditional initiative campaigns, PUFMM is relying heavily on Internet-based activism. The group's Facebook page already has 4,800 members, and PUFMM is counting on cascading new memberships to gather what it hopes is 1.2 million signatures, providing a very comfortable cushion at validation time. PUFMM is also hoping for each signatory to kick in $5. That way, the group could meet its self-imposed budget goal."Patients need a safe, affordable and effective medication. We hope Florida will lead the nation in marijuana research to further its uses as a medicine," PUFMM head Kim Russell, whose father suffers from Parkinson's Disease, told the Cape Coral Daily Breeze.

"There is absolute support, we just have to get everyone organized," she said, citing favorable national polling data.If approved, the petition would create a constitutional amendment that reads as follows:"(a) No person shall be deprived of life, liberty or property or otherwise penalized for the cultivation, purchase, use or possession of marijuana in connection with the treatment of Alzheimer's, cachexia, cancer, chronic pain, chronic nervous system disorders, Crohn's disease, epilepsy and other seizure disorders, glaucoma, HIV/AIDS, multiple sclerosis, Parkinson's, diseases causing muscle spasticity, or other diseases and conditions when recommended by a physician."(b) This section shall be self-executing. The legislature, however, may provide by general law for the voluntary registration of persons intending to exercise their rights hereunder and for the regulation of the distribution and sale of marijuana to persons intending to exercise their rights hereunder."(c) Nothing herein, however, shall be construed so as to prevent the legislature from enacting laws penalizing the operation of motor vehicles, boats, watercraft or aircraft while under the influence of marijuana or regulating the use of marijuana by minors.

Similarly, all laws in effect at the time of adoption of this section penalizing the operation of motor vehicles, boats, watercraft or aircraft while under the influence of marijuana or regulating the use of marijuana by minors shall remain in force."The proposed amendment does not create limits on the number of plants or the amount of usable marijuana patients may possess. It appears to leave that up to the legislature.

In fact, PUFMM would prefer that the legislature just went ahead and passed a medical marijuana bill and is asking people to write to their representatives in the hope of achieving just that. "We are hoping they will submit a bill rather than a ballot initiative," Russell said. "The Internet is a huge resource for us.

"While the effort is just a week old, it has already been denounced by the Florida Sheriff's Association and by Bill Janes, director of Florida's Office of Drug Control. "When we increase the availability of marijuana we increase the availability for young people," Janes said. "What this petition doesn't address is how the marijuana will be controlled. Will we just allow random growing of marijuana?"

Let's Talk About Poop - Unspoken pain of Crohn's disease

I enjoyed this article below, found in the Birmingham (UK) Post. It addresses several issues, but primarily focuses on the challenge of talking about Crohn's Disease. Crohn's is often an unspoken illness, but I say talk about it...throw it out there and you will be surprised.

Wendy Holt tells Diane Parkes why she is happy to challenge ignorance about an incurable bowel condition. Three weeks before walking down the aisle on her wedding day Wendy Holt was diagnosed with an incurable condition known as Crohn’s disease.

But the diagnosis was actually a relief as she had been suffering its symptoms for 18 months without knowing what the problem was.
Taking medication gave some immediate help which meant that by her wedding day in 1995 she was more than able to smile for the cameras.

Crohn’s disease is one of the unspoken illnesses. Being an intestinal disorder whose symptoms can include diarrhoea and a sudden and urgent need to go to the toilet as well as exhaustion and sickness, it is not an illness people tend to feel comfortable talking about.
Indeed Wendy, who is 40 and works as a part-time school governors’ clerk, had never heard of it when she was told she had it.

“When I started getting the symptoms I thought it was just a series of stomach bugs and it would go away,” she recalls. “And many times it did. But then one day I came home and sat down on the stairs and literally just dropped.
“When Andy, now my husband, came back that night he said I was really poorly and needed to see a doctor.”

Initially the doctor treated the problem as a blockage to the bowel but a blood test led to an endoscopy and colonoscopy at Solihull Hospital where Crohn’s disease was first mentioned.
“The consultant said it could be Crohn’s disease or it might be tuberculosis,” says Wendy, of Solihull. “He gave me some steroids to take and said that if it was Crohn’s it would make it better but if it was TB I would be back in hospital the next day.

“And the steroids made it instantly better, it was great.”
This state of play lasted for two years when the symptoms returned with a vengeance.
“I was very poorly and the steroids weren’t working so I was taken to Solihull Hospital where they were feeding me with a tube but that didn’t work either so they operated.”
In the event, doctors removed part of the colon and Wendy spent a month in hospital recovering. All seemed well until 1999 when she had her first child Eleanor.

“They did warn me beforehand that I could have problems because of the pregnancy,” says Wendy. “When you are pregnant your body naturally creates steroids. If you are taking steroids as medication in a normal condition, you are weaned off them gradually. But when your body has been producing them naturally during pregnancy and you then have the baby they stop suddenly.”

More medication seemed to settle the problem until Wendy had her second child, Nicholas, now aged six. This time steroids were not enough and in December, 2007, Wendy underwent another operation to remove a narrowing of the small bowel.
This caused its own problems because Wendy had lost the part of the intestine which absorbs iron so she became anaemic and very poorly. Taken to Heartlands Hospital, her condition was stabilised again with tablets.

Wendy is the first to admit the entire experience has been a roller-coaster. Her condition is stable and she is under the care of the specialist inflammatory bowel diseases clinic at Heartlands where she can contact a nurse as a self-referral at any time.
Over the years Wendy and her 40-year-old husband Andy, an engineer with Land Rover, have learned to live with Crohn’s disease.

“When I am in remission and it is controlled by the steroids then the worst I get is tiredness,” she says. “But when it flares up it is a real pain as I always need to plan everything and know there are toilets nearby.”

Wendy is happy to talk about her condition in an attempt to battle the lack of knowledge about Crohn’s disease.

“When I was diagnosed I had never heard of it and most of the time when you tell people they don’t know what it is,” she says.

“The problem is that people don’t like to talk about it. It isn’t one of those conditions that everyone knows about.

“The point is that from the outside you cannot see there is anything the matter. Only once, when I was feeling really poorly, did a friend at work tell me I looked grey. Other than that, people don’t realise. When I was diagnosed I found out a lot of information from the National Association for Colitis and Crohn’s disease and became a member and still am. I don’t always read everything as you don’t always want to know but it can give you a lot of information.
“Crohn’s disease is not curable and they can’t say why someone develops it. And it can be difficult when people then don’t know what it is. I don’t want sympathy from people but it helps when people understand.”

Emmerdale actor Jeff Hordley is aiming to get the word out about Crohn’s disease after he was diagnosed with the condition 13 years ago.
This summer Jeff has joined forces with the National Association for Colitis and Crohn’s Disease (NACC) for their campaign – Rising to the Challenge.

Aiming to improve levels of understanding among the general public, Jeff, who plays Cain Dingle in the soap, has fronted the campaign. And he fully understands the implications of the disease. “Having lost my mum to Crohn’s when I was nine, I was devastated when I was diagnosed with Crohn’s and thought that it was a death sentence,” he recalls. “However my doctors were excellent and they explained that I would do well after a major operation to remove parts of the bowel.

“At the time of the operation I was a student actor and probably well-placed to talk openly about my condition. I personally find that people are more supportive and understanding if they know about my condition.”

And it is an uphill task. NACC, which provides support and information for families affected by Crohn’s disease and fellow inflammatory bowel disease colitis, says research shows only 64 per cent of the population are aware of the conditions.

Chief executive Richard Driscoll says: “The major issue is that despite colitis and Crohn’s affecting one in 250 of the population, making them relatively common conditions, many young people with the symptoms of urgent diarrhoea, pain and severe fatigue have their lives made even tougher because two-thirds of the public have no understanding of their symptoms.”