Thursday, December 17, 2009
Sunday, December 6, 2009
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.
Wednesday, November 25, 2009
Don't eat too much turkey (for those of us lucky to be healthy enough) and watch your health.
Tuesday, November 3, 2009
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.
Tuesday, October 27, 2009
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.
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.
Friday, October 16, 2009
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
Thursday, October 1, 2009
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.
Monday, September 14, 2009
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.
Sunday, September 6, 2009
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.
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
Wednesday, August 26, 2009
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.
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.
Monday, August 17, 2009
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."
"Liquids first, then softs, then solids. We'll see how you do."
"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."
Wednesday, August 12, 2009
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. \
Monday, August 3, 2009
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?"
Tuesday, July 28, 2009
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.”
Monday, June 29, 2009
Biogen Idec Inc. has reported a new case of a potentially lethal brain inflammation in a patient using its drug Tysabri, the tenth such case since the drug was reintroduced three years ago.
The company said late Friday it confirmed the presence of progressive multifocal leukoencephalopathy, or PML, on Tuesday. Biogen said the patient, who lives outside the U.S., had been using Tysabri for 30 months. Three of the ten cases of PML have been confirmed this month. In morning trading, shares of Cambridge, Mass.-based Biogen slid $2.86, or 5.7 percent, to $47.21.
Tysabri is approved as a treatment for multiple sclerosis and Crohn's disease. It was pulled from the market in 2005 due to concerns about PML, and sales resumed in July 2006 with restrictions and a monitoring program.
The ten confirmed PML cases have all been in multiple sclerosis patients, and concerns about the disease have pressured sales of the drug.
Biogen said there were about 40,000 patients on Tysabri at the end of March, with 20,800 of them in the U.S. Deutsche Bank analyst Mark Schoenebaum said in a note that the rate of PML infections in Tysabri patients is less than one in a thousand, for patients who have been on the drug for two years. He said the average time on Tysabri for the PML cases is 24 months, and that as more new infections appear, doctors may start taking patients off Tysabri sooner, or giving patients breaks from the drug.
Schoenebaum said that could "dramatically" reduce sales growth. Biogen markets Tysabri with Irish drug maker Elan Corp. PLC, whose shares dipped 38 cents, or 5.2 percent, to $6.98. Shares of PDL BioPharma Inc., which developed the drug and receives royalties on sales from Elan, declined 6 cents to $7.90.
Tuesday, June 16, 2009
Dr. Raanan Shamir of Tel Aviv University's Sackler School of Medicine and Schneider Children's Medical Centre shows that there is another path to treating IBD in children: a nutritional formula that was first developed for astronauts. This supplement puts 60-70% of children with Crohn's disease, a common IBD disorder, into remission — a success rate similar to that of traditional steroid-based drugs, but without side effects like malnutrition and growth retardation.
Dr. Shamir recently reported his research in the Journal of Pediatric Gastroenterology and Nutrition.
Eating Like an Astronaut
Dr. Shamir's research was inspired by the problem of malnutrition and growth retardation in children battling bowel disease. Steroids and other biological agents, the most common treatment for IBD, were having an adverse affect on the children's growth, despite their effectiveness in adult patients.
It was a problem first tackled by NASA: How could astronauts most efficiently get their daily nutrients? The answer was a specially-designed powder that contains all the daily nutrients a person needs. Aboard spacecrafts, astronauts dine on this nutritional powder mixed with water. Since then, these powders have become a common item on the pharmacy shelf.
A similar concept works wonders for children suffering from bowel disease. "Prepared powder, with liquids, gives you all the nutritional requirements you need for the day," Dr. Shamir explains. "We don't know why these formulas work, and nobody has shown that any one formula is preferable to another. People have to be committed and eat nothing else during the period of time they are on nutrition therapy, and it is difficult to do — but if they do it, they go into remission."
To induce remission, children need to be on nutrition therapy for 6-8 weeks. And in order to maintain remission, 25-50% of their caloric intake must be supplied by nutrition therapy, sometimes for years. This is why children experiencing the treatment need the support of physicians, dieticians, psychologists, and of course their families.
Dr. Shamir's quest to educate the international medical community about the benefits of nutrition therapy has been an uphill battle. "The acceptance of this is difficult," he says. "You have to persuade the family. Not all physicians know it works, and it's much easier to give someone a prescription than try to work with the child."
A Replacement for Steroids
"In adults, studies have shown that steroids are more effective in the battle against bowel disease than nutrition-based therapies. I think it is easier to get compliance from children, especially when it involves their growth. For adults, growth is not a concern — they just want to feel better," explains Dr. Shamir.
Dr. Shamir and his team of researchers have worked to show the international medical community that nutrition was equal to steroids in the treatment of children with bowel disease. "We published the most recent meta-analysis to show that nutrition is as good as steroids as a first-line therapy for Crohn's disease," he says.
The next step in his research, says Dr. Shamir, is to "define exactly the role of nutrition in inducing remission in these patients, and the role of nutrition in maintaining remission.
Friday, June 12, 2009
For eight years, Jessica Terry suffered from stomach pain so horrible, it brought her to her knees. The pain, along with diarrhea, vomiting and fever, made her so sick, she lost weight and often had to miss school.
During a science class, Jessica Terry, 18, discovered a tell-tale granuloma in her own pathology slide.
Her doctors, no matter how hard they tried, couldn't figure out the cause of Jessica's abdominal distress. Then one day in January, Terry, 18, figured it out on her own.
In her Advanced Placement high school science class, she was looking under the microscope at slides of her own intestinal tissue -- slides her pathologist had said were completely normal -- and spotted an area of inflamed tissue called a granuloma, a clear indication that she had Crohn's disease.
"It's weird I had to solve my own medical problem," Terry told CNN affiliate KOMO in Seattle, Washington. "There were just no answers anywhere. ... I was always sick."
Terry, who graduated from Eastside Catholic School in Sammamish, Washington, this month, is now being treated for Crohn's, says her science teacher, MaryMargaret Welch.
"She was pretty excited about finding the granuloma," Welch said. "She said, 'Ms. Welch! Ms. Welch! Come over here. I think I've got something!' "
Welch, who has taught the Biomedical Problems class at Eastside for 17 years, immediately went on the Internet to see whether Terry had indeed spotted a granuloma.
"I said, 'Jeez, it certainly looks like one to me,' " Welch remembered. "I snapped a picture of it on the microscope and e-mailed it to the pathologist. Within 24 hours, he sent back an e-mail saying yes, this is a granuloma."
Watch Terry describe her experience »
Although Terry was relieved to finally get a diagnosis, it was also tough for her to hear that she has such a serious disease.
There are treatments, but there is no cure for Crohn's, a condition in which the digestive tract becomes inflamed. It can lead to ulcers, malnutrition and other health problems.
"As I get older, the disease can get worse," Terry told KOMO.
Crohn's disease is often misdiagnosed or diagnosed very late, says Dr. Corey Siegel, director of the Inflammatory Bowel Disease Center at Dartmouth-Hitchcock Medical Center in Lebanon, New Hampshire.
"Granulomas are oftentimes very hard to find and not always even present at all," Siegel said. "I commend Jessica for her meticulous work."
Pathologists also sometimes miss important findings for other diseases, says Dr. Mark Graber, chief of the medical service at the Northport VA Medical Center in New York.
"This story carries a valuable lesson about how errors are found. It's very often by 'fresh eyes,' just like in Jessica's case," he said. "Some specialty centers, recognizing the reality of perceptual error and the power of a second independent reading, are now requiring second reviews on certain types of smears and pathology specimens."
Welch credits Terry's "fresh eyes" but also local pathologists who volunteered to train her and her classmates on how to view specimens under the microscope.
"We've been lucky to have that partnership. It allowed Jessica to think of herself as a scientist," she said. "The class empowered Jessica to think of herself as being a partner in her own health care."
As for Terry's future, she'll start nursing school in the fall. She's written a book for children about Crohn's disease, which she hopes to have published. In the meantime, she's grateful for her science class and for the pathologist for giving her her slides.
"This has been the highlight of my high school career, for sure," Terry told the Sammamish Reporter newspaper. "It's been amazing."
Wednesday, June 10, 2009
Children and adolescents with Crohn's disease are at significantly increased risk for depression and anxiety, a researcher said here.
Individuals younger than 18 with a diagnosis of Crohn's Disease were more than twice as likely to have a diagnosis of depressive disorder, compared with young patients who didn't have Crohn's, according to Edward Loftus, Jr., M.D., of the Mayo Clinic.
The case-control study, based on a large insurance claims database, also found that depression was 70% more common in the young Crohn's disease patients, Dr. Loftus said at a poster presentation here at Digestive Disease Week.
Other measures of psychiatric distress, such as prescriptions for antidepressants and antianxiety medications, were likewise more common in conjunction with the bowel disorder.
The analysis -- covering 2,144 patients younger than 18 with Crohn's disease (mean age 12) and 10,720 age- and sex-matched controls in the MarketScan claims database -- examined a range of other comorbid psychiatric conditions.
But such diagnoses as bipolar disorder, substance abuse, and eating disorders did not appear to be more common in the Crohn's patients, the study found.
Hazard ratios for measures of depression and anxiety in the context of Crohn's disease, after adjusting for age, sex, and comorbidities, were as follows:
Any depression diagnosis: 1.7 (95% CI 1.4 to 2.3)
Any anxiety diagnosis: 2.3 (95% CI 1.7 to 3.2)
Use of antidepressants: 2.4 (95% CI 1.9 to 3.0)
Use of benzodiazepines: 2.4 (95% CI 1.7 to 3.4)
Persistent depression: 2.8 (95% CI 1.7 to 4.4)
Persistent anxiety: 4.4 (95% CI 2.2 to 8.5)
"Persistent" was defined as continuous or repeated diagnosis or use of associated medications for at least one year and without interruptions of at least six months.
Dr. Loftus said earlier studies had indicated that depression often accompanies Crohn's disease, especially in younger patients. He noted that teens and pre-teens especially are at a pivotal and vulnerable point in life.
"You bring in a chronic disease, and if that goes on, especially untreated or inadequately treated for a long enough time, that can affect their whole psyche," he said.
Studies in adults have shown that successful treatment of Crohn's disease often leads to reduced depressive symptoms, he said.
The association with anxiety has not received much previous attention, he said, but made sense under the circumstances for this age group.
"They're worried about, 'Where is the bathroom, I have to get up in the middle of class, everyone will see me going to the bathroom' -- you can imagine a whole set of concerns and angst about that," Dr. Loftus said.
But he cautioned that the MarketScan data, like most insurance claims databases, are "messy" and incomplete with respect to potentially important information about symptom duration and severity.
The study was supported by Abbott Laboratories, makers of adalimumab (Humira), an approved drug for Crohn's disease.
Dr. Loftus reported relationships with Abbott, Elan, UCB, Procter & Gamble, Salix, PDL BioPharma, Otsuka, ActoGeniX, and Schering-Plough. Other authors were Abbott employees or contractors.
Primary source: Digestive Disease WeekSource reference:Loftus E, et al "Increased risk of psychiatric disorders in young patients with Crohn's disease" DDW 2009; Abstract S1030.
Sunday, May 31, 2009
BACKGROUND: Crohn's disease is a chronic, long-term illness in which the intestine, or bowel, becomes inflamed. It is part of a group of diseases known as inflammatory bowel disease, or IBD. Crohn's disease can affect any area of the GI tract, but it most commonly affects the lower part of the small intestine, called the ileum. The swelling extends deep into the lining of the affected organ and can cause pain, fever and diarrhea. The disease can surface at any age, but it is most common between the ages of 15 and 30. People with Crohn's disease experience periods of severe symptoms, followed by weeks or years of remission. Treatment may include drugs, nutrition supplements, surgery or a combination of these options. The goal is to control inflammation and relieve the symptoms. Treatment can help control the disease by lowering the number of times a person experiences a recurrence, but there is no cure.
CROHN'S AND PREGNANCY: In the past, women with Crohn's were counseled against pregnancy. However, current medical management strategies have made childbearing safer for both mother and baby. Some medications are best avoided during pregnancy, but others are considered safe because of their long history of safe use by patients. Research studies have shown that some drugs commonly used for both maintenance therapy and acute flare-ups of Crohn's are safe for pregnant women to use. They include sulfasalazine (Azulfidine), forms of mesalamine (Asacol, Pentasa, Rowasa) and corticosteroids (Prednisone). Other drugs like azathioprine (Imuran, Azasan), adalimumab (Humira), certolizumab (Cimzia) and infliximab (Remicade) appear to be safe to take during pregnancy.
Methotrexate and thalidomide are two immunosuppressive drugs that should not be used during pregnancy as they have an effect on an unborn child. Methotrexate can cause abortion and skeletal abnormalities, and it should be discontinued at least three months before conception. Thalidomide is well known for causing limb defects as well as other major organ complications in a fetus.
The severity of Crohn's symptoms that are present at conception often continue throughout pregnancy. Women are encouraged to get their disease under control and in remission before conception. They can also get their bodies prepared for a pregnancy by increasing intake of folic acid, quitting smoking, getting more exercise and eating healthier.
For women with Crohn's, the biggest factor influencing a healthy pregnancy is the state of disease activity. A planned pregnancy when Crohn's is in remission has the greatest chance for a favorable outcome. To best manage all aspects of your care during and after pregnancy, work carefully with the doctor you're seeing for Crohn's disease as well as your obstetrician and your baby's pediatrician.
Tuesday, May 26, 2009
Drew is afflicted with Crohn's disease and has spoken in many interviews about his struggle with the disorder. It has not stopped him from competing in mixed martial arts, but he does believe it has a large effect on his athletic ability. McFedries won his match last Friday (Drew McFedries threw 14 punches in his middleweight bout at UFC 98 against Xavier Foupa-Pokam.
His second punch -- a massive right hook -- was the only one McFedries needed. It took all of 37 seconds for McFedries to secure the TKO over Foupa-Pokam, who threw all of zero punches, kicks, knees, etc "I come in ready to throw down," McFedries said. )
McFedries’ influence extends far beyond fight fans and kids looking for inspiration though, and what he takes pride in is showing people with Crohn’s disease (a painful disease which attacks the intestinal tract) that you can live a normal life.
“I’ve come to the realization that pain is just part of your day,” he says simply. “Sometimes there are some embarrassing moments, but you learn to deal with it and you move on. You wake up some days and you have no energy and you definitely don’t want to move around. You don’t want to do anything, and you’re forced to train three or four more hours. Some days can be brutal for me, but other days, I’m on all cylinders man; I’m more than electric, that’s for sure.”
You sort of wonder where McFedries would be in his career right now if not for the disease, which sidelined him for over three years from 2003 to 2006. In some bizarre way, he believes it has mellowed him out and made him a more responsible and professional athlete.
“My chron's disease was a crutch because I was forced to take three years off,” he said. “I did train in that time, but I couldn’t really do much of anything because of my energy level. I’d get into the gym once a week or maybe three times a week, but that was about it. But when I got through the barrier of that, and getting the right medications and things, it changed my perspective on the fight game. I used to be a guy who could go out party until three, four in the morning, pass out, get up at eight, be at the gym at nine, train from nine to noon, take a nap, go party again, and I could do that day in and day out. We used to have so much fun, but that came to a screeching halt with the Crohn’s disease, and I think it put things in perspective. Back when I was a younger guy, I really didn’t respect or value my life. I took my body for a roller coaster ride, and what happened to me has really calmed me.”
So at 30, with the past experience that could fill volumes, Drew McFedries may be right on time to become MMA’s unlikeliest hero as he starts making some noise in the middleweight division. At the very least, he certainly has some tricks up his sleeve for the new generation of mixed martial artists.
Thursday, May 21, 2009
Sit down and relax, because this is the story of how I shit my pants on a date and successfully cut my underwear off while walking down Broadway in New York City.
Away we go. Let me transport you too a chilly winter night in the early winter. Must have been about 1998. I am living in Connecticut and decide to take a girl I was dating into the city for a night on the town. We enjoy a nice dinner at Gramercy Tavern (strange how many details I remember from this night). We are walking to a play (Rent..UGH) and I innocently try to slip a fart past a turd. Well, I failed miserably and propelled a liquidy stream down my right leg. (too much detail?) Thank the good lord for my 3/4 length suede jacket, which mostly hides the damage. While it isn't too obvious to others, I still have issues to deal with.
Great, now what? Not very romantic. As panic start to step in, I coolly collect myself and begin to formulate a plan. I will use my Swiss Army Knife to cut my underwear off! BRILLIANT! But wait, the keys jingling are going to give me away. So before I set about this operation, I remove the knife from the key chain. I open it up, slide my hand down the side of Gap Khakis.
Over the course of several blocks and 15 minutes, all while maintaining a conversation on how great the meal was, how awesome Savage Garden and BackStreet Boys are (hey its 1998) I proceed to cut my ALL-TIME FAVORITE BOXERS off. And no..despite discussing Backstreet and going to see Rent...I am not gay.
So anyhow, I am making progress. It takes another block while I shake, wiggle and shimmy until I smoothly expel the soiled underpants out my pants let and onto the sidewalk in front of a Chinese takeout restaurant (great marketing tool)! I look back longingly at my trusty (and slightly dirty) friends, and briefly wonder if I should fess up just so I can rescue them from the feet that will surely trample them (Honey, did you step in dog poo?).
Begrudgingly I forge ahead, all the while wondering if I will ever be able to replace them. Never once did my date figure it out. Believe it or not, I went on to marry this woman. In hindsight (poor word choice), I shoulda just told her I taken a dump on the sidewalk...would have saved me alot of money and trouble, since we were divorced after a coupla years.
An city councilman in Everly, Iowa who was arrested on marijuana charges has resigned.
47 year old Stephen Rank submitted his resigation from the council on Monday. In a letter to city officials, Rank says the May 11 search of his home and his arrest have brought an inordinate amount of attention to the council.
Rank was charged with possession of marijuana and possession of drug paraphernalia after investigators with the Clay County sheriff's office found what they described as a significant amount of marijuana in Rank's home in the small northwest Iowa town.
Rank was in the middle of his second term on the council when he was arrested.
He claims he has Crohn's disease and uses marijuana to treat the condition.
In Other Crohn's and Marijuana News: Judging by the picture Grandma SEVERE flare up of Crohn's Disease.
Sunday, May 17, 2009
Julie Katrichis lay on the bathroom floor in her parents' West Allis house and screamed in pain.
It was December 2004. She was a junior at the University of Wisconsin-Milwaukee, about to start finals week. Her Crohn's disease had been causing her immense pain for two months, but she'd tried to stick it out at school.
Katrichis went to the emergency room. She wouldn't return to UWM for two years - after months-long stays in the hospital, multiple surgeries and various complications.
When she graduates Sunday with a bachelor's degree in nursing, her diploma will represent just one piece of her wrenching and enlightening education in health care.
Her story is one of many that will play out Sunday and this week, as many area colleges and universities host commencement exercises.
Katrichis, now 24, was in her late teens when she was diagnosed with Crohn's disease - a type of bowel disease that inflames the digestive tract, causing severe diarrhea and abdominal pain.
"It's like you're being ripped apart from the inside," she said. "You feel embarrassed, you feel weak, and you hope it goes away."
When it came time for Katrichis to attend college, UWM made the most sense - she could live at home and manage her health with the support of family. At first, she wasn't sure what she wanted to study.
Life would intervene to help her decide.
After her December 2004 visit to the emergency room, Katrichis needed a colectomy - surgery to remove her colon. Complications in the surgery led her to contract pancreatitis. Her life for the next two years was a chaotic and painful series of procedures. Each step seemed to lead to another problem requiring another procedure, another specialist or unit.
"It was so chaotic, and I was still pretty shy about advocating for myself," she said.
The people who provided most of Katrichis' care and spent the most time with her were nurses. Her best nurses at Froedtert Hospital were "saints" who became part of a second family. They were genuine. They let her make decisions about her care.
Katrichis said good nurses are "ones who are willing to listen. You think that's a given, but it wasn't."
The bad nurses - and she had some of them - are task-oriented, just trying to get things done without speaking to the patient.
"It's really scary when a nurse comes into a room and rushes and does not clue you in to what's going on," Katrichis said.
By fall 2006, Katrichis was ready to go back to school, but she faced challenges. She was still physically weak. Just taking a shower exhausted her. Hospital bills had left her family with a heavy financial burden, particularly because her father had been laid off not long before she had her first major surgery. The application process for the nursing program was intimidating and complex.
With the help of her mentor, Nigel Rothfels of the office of undergraduate research, Katrichis navigated the system. She got into the program and won a $10,000 scholarship for students with Crohn's from biopharmaceutical company UCB.
As she embarked on her clinical placement, Katrichis found herself sharing her experience with her cohort of classmates in the program. She has already started exercising her power as a patient advocate before she officially becomes a nurse.
"She just really treated all the patients individually," said Theresa Grotkiewicz, a clinical instructor at UWM. "She never made assumptions and really listened to what they were saying."
Katrichis is graduating with a bachelor's degree in nursing. She'll soon start a job as a cardiac care nurse at Wheaton Franciscan Healthcare-Elmbrook Memorial.
In the run-up to the big day, her father left her a voice mail message every day with a commencement countdown.
"It's definitely this huge accomplishment - it's not just 'I'm graduating.' This was my goal," she said. "To make it just feels incredible."