It can make you miserable. It's expensive to treat, and it involves an area of the body nobody wants to discuss in polite conversation. But if you're one of the unlucky people to have Crohn's disease, a type of inflammatory bowel disorder, help may be in sight.
A Carle Clinic doctor sees some potential in a new drug composed of adult stem cells for the more severe cases of Crohn's, and is now enrolling patients to try it at Carle.
"Basically, this is rescue therapy," said Dr. Eugene Greenberg, a gastroenterologist running the local trial of the drug Prochymal.
Crohn's disease is a chronic, lifelong inflammation of the digestive tract lining and bowels that affects about 500,000 people in the U.S., according to the drug maker, Osiris Therapeutics.
Symptoms include severe abdominal pain, cramping and diarrhea.
People who have it in its mild form live a fairly normal life with some modifications and treatments, Greenberg said. But in its more severe form, he adds, "it's pretty miserable. It's pain, it interferes with the quality of life, it interferes with holding a job."
And at a time when millions of people can't afford health insurance, Crohn's is one pricey disease to treat. The medications per single patient run about $23,000 a year, Greenberg said.
Traditional treatments for Crohn's include steroids, immunosuppressant drugs and biologic drugs.
Prochymal is composed of stem cells that have been obtained from the bone marrow of normal, healthy adult volunteers. Studies have shown the cells don't require matching between the donor and recipient, and they may have both immunosuppressive and healing benefits for people with Crohn's, according to the drug company.
Carle, one of 55 study sites in the U.S., is entering the trial in its third phase.
Greenberg said there is reason to think Prochymal will work. And since there haven't been any serious adverse reactions in earlier phases of the trial, Prochymal appears to be safe, he said – though, he qualifies, time and wider use will tell.
Patients entering this trial will receive the drug in infusion form, and some will receive a placebo.
The third phase of the study is intended to establish the drug's safety and how long remission lasts in patients with moderate to severe symptoms of Crohn's.
To qualify, patients must have confirmed Crohn's disease of the ileum (part of the small intestine) or the colon or both, and either have not improved with or can't tolerate at least one steroid, one immunosuppressant and one biologic therapy.
Qualified patients must also be between age 18 and 70, in general good health and able to go to
Carle Clinic for up to 10 visits over three months.
Patients must not be pregnant or nursing; allergic to X-ray dye, pork or beef; or in any other research studies.
Monday, September 29, 2008
Wednesday, September 24, 2008
David Garrard Crohn's Disease Commercial
As most of my loyal blog readers know, I have written several articles about Jacksonville Jaguars quarterback David Garrard and his battle with Crohn's Disease. Below is a video highlighting David Garrard's experiences of living with Crohn's Disease. It is basically a commercial for the CCFA, Centocor and Crohnsinthezone.com which is run by livingwithcrohnsdisease.com. Click Play below to view the David Garrard Crohn's Disease Commerical:
NFL Quarterback David Garrard - Overcoming Crohn's Disease - The most amazing bloopers are here
NFL Quarterback David Garrard - Overcoming Crohn's Disease - The most amazing bloopers are here
Tuesday, September 23, 2008
Message I got from one of my Crohn's Blog readers on Myspace.
Now this blog reader shall remain nameless, but it can show you the down side of Crohn's. We all try to remain positive, but sometimes we need to vent and rant. This is classic, and painfully accurate message from one of my myspace friends (that i met through this blog). I am sure many of you can relate, so I had to post this. Parental Advisory: Explicit Lyrics
I'M SO TIRED OF MESSING WITH CROHN'S!!!!!!! NOTHING WORKS, NOT THE HUMIRA, NOR THE STEROIDS, THE OTHER PILLS, NOTHING.
CROHN'S SUCKS AND I'M TIRED OF WORRYING THAT I MAY NOT MAKE IT TO THE BATHROOM, I AM TIRED OF WONDERING "IF I EAT THIS, WILL IT MAKE ME SICK?"I'M TIRED OF MY SEVEN YEAR OLD SON WORRYING THAT I AM SICK AND EMBARRASED FOR HIM THAT HE HAS TO RUN TO THE BATHROOM WITH MY IN THE MIDDLE OF THE GROCERY STORE.
I'M SICK OF THE SHITTY INSURANCE COMPANY SUCKING EVERYTHING FROM ME BUT THE ACTUAL CROHN'S. I'M SICK OF SURPRISE BILLS FOR MEDICATION THAT DOESN'T WORK.I'M JEALOUS OF MY HUSBAND FOR BEING ABLE TO ACTUALLY FART AND NOT WORRY THAT HE MAY SHIT HIMSELF.
I AM SICK OF WORRYING THAT I MAY BE SICK DURING INTIMATE MOMENTS WITH MY HUSBAND. I'M JUST TIRED OF IT. IT ALL SUCKS BIG HAIRY BALLS. THANKS FOR LETTING ME VENT. SORRY FOR THE LANGUAGE, BUT I THINK YOU PROBABLY HAVE HEARD THE BAD WORDS BEFORE.
I KNOW YOU DON'T EVEN KNOW ME, BUT IT'S COMFORTING TO KNOW THAT THERE IS SOMEONE I CAN VENT TO THAT COMPLETELY UNDERSTANDS WHAT I'M GOING THROUGH.
I'M SO TIRED OF MESSING WITH CROHN'S!!!!!!! NOTHING WORKS, NOT THE HUMIRA, NOR THE STEROIDS, THE OTHER PILLS, NOTHING.
CROHN'S SUCKS AND I'M TIRED OF WORRYING THAT I MAY NOT MAKE IT TO THE BATHROOM, I AM TIRED OF WONDERING "IF I EAT THIS, WILL IT MAKE ME SICK?"I'M TIRED OF MY SEVEN YEAR OLD SON WORRYING THAT I AM SICK AND EMBARRASED FOR HIM THAT HE HAS TO RUN TO THE BATHROOM WITH MY IN THE MIDDLE OF THE GROCERY STORE.
I'M SICK OF THE SHITTY INSURANCE COMPANY SUCKING EVERYTHING FROM ME BUT THE ACTUAL CROHN'S. I'M SICK OF SURPRISE BILLS FOR MEDICATION THAT DOESN'T WORK.I'M JEALOUS OF MY HUSBAND FOR BEING ABLE TO ACTUALLY FART AND NOT WORRY THAT HE MAY SHIT HIMSELF.
I AM SICK OF WORRYING THAT I MAY BE SICK DURING INTIMATE MOMENTS WITH MY HUSBAND. I'M JUST TIRED OF IT. IT ALL SUCKS BIG HAIRY BALLS. THANKS FOR LETTING ME VENT. SORRY FOR THE LANGUAGE, BUT I THINK YOU PROBABLY HAVE HEARD THE BAD WORDS BEFORE.
I KNOW YOU DON'T EVEN KNOW ME, BUT IT'S COMFORTING TO KNOW THAT THERE IS SOMEONE I CAN VENT TO THAT COMPLETELY UNDERSTANDS WHAT I'M GOING THROUGH.
Crohn's Disease is Annoying
So am i having a Crohn's Flare up or not? Hard to tell. I have felt pretty good since the first round of the Osiris Prochymal Stem Cell study, but I have had flare symtoms since Saturday. At first I thought I ate some bad seafood (at Goombays in Satellite Beach), but now I wonder if it is a full on Crohn's Disease flare. I go to Dr. Shafran's on Thursday so maybe they will have some insite. I guess the positive is that I would get to start the next phase of Prochymal. I will keep you posted. In the meantime....back to the bathroom.
Tuesday, September 16, 2008
Humira Being Used to Treat Crohn's in Kids
9/15/2008 LAS VEGAS, Nev. -- More than half a million Americans are living with Crohn's disease and more than 100,000 of them are kids. There's no cure, but researchers have found a way to help ease the painful symptoms.
Fifteen-year-old Taralyn Allen is finally in the driver's seat! It's been a long road getting here. For the past four years, Allen has suffered from Crohn's disease.
"People aren't aware that Crohn's disease can affect children," Howard Baron, M.D., a pediatric gastroenterologist at Sunrise Children's Hospital in Las Vegas, Nev., told Ivanhoe. "The parents will assume it's the flu and it goes on and on and on."
Crohn's is an inflammatory bowel disease where the intestinal lining becomes inflamed, causing severe abdominal pain, diarrhea, vomiting, nausea and bleeding.
"I felt sick 24-7," Allen told Ivanhoe.
Allen's Crohn's was treated with steroids, which relieved some of the pain, but caused her to go from 70 pounds to 130 pounds in just a few months. Now, she's off the steroids. Allen is the first child in the world to take part in a study of a new drug marketed at Humira (adalimumab). It's already successfully used on adults.
"It is an antibody against a chemical that starts the inflammatory cascade in your body," Dr. Baron said.
It stops white blood cells from migrating to the lining of tissues, which causes the inflammation and the pain. But the drug comes with risks. It decreases the immune system and kids with Crohn's could be at a slightly higher risk for lymphoma. But for Allen, it's worked.
"Crohn's doesn't exist in me anymore," she says. "I feel completely normal."
Humira is still in studies. Children as young as five can enroll in the clinical trial. The youngest patient enrolled so far is 10-years-old.
Fifteen-year-old Taralyn Allen is finally in the driver's seat! It's been a long road getting here. For the past four years, Allen has suffered from Crohn's disease.
"People aren't aware that Crohn's disease can affect children," Howard Baron, M.D., a pediatric gastroenterologist at Sunrise Children's Hospital in Las Vegas, Nev., told Ivanhoe. "The parents will assume it's the flu and it goes on and on and on."
Crohn's is an inflammatory bowel disease where the intestinal lining becomes inflamed, causing severe abdominal pain, diarrhea, vomiting, nausea and bleeding.
"I felt sick 24-7," Allen told Ivanhoe.
Allen's Crohn's was treated with steroids, which relieved some of the pain, but caused her to go from 70 pounds to 130 pounds in just a few months. Now, she's off the steroids. Allen is the first child in the world to take part in a study of a new drug marketed at Humira (adalimumab). It's already successfully used on adults.
"It is an antibody against a chemical that starts the inflammatory cascade in your body," Dr. Baron said.
It stops white blood cells from migrating to the lining of tissues, which causes the inflammation and the pain. But the drug comes with risks. It decreases the immune system and kids with Crohn's could be at a slightly higher risk for lymphoma. But for Allen, it's worked.
"Crohn's doesn't exist in me anymore," she says. "I feel completely normal."
Humira is still in studies. Children as young as five can enroll in the clinical trial. The youngest patient enrolled so far is 10-years-old.
Friday, September 12, 2008
Story of Billy Tytaneck one of the first Crohn's patients in the country to undergo Stem Cell Procedure
Less than a year ago, 25-year-old Billy Tytaneck felt as if he'd been backed into a corner.
The severe case of Crohn's disease he'd been battling for half his life was becoming impossible to live with. In April 2007, Mr. Tytaneck, at six-foot-one, was underweight by 20 to 60 pounds, weighing only 130 pounds.
Eating had become a chore to avoid, as he was wracked by poor digestion and constant stomach cramps compounded by terrible bouts of diarrhea that would send him to the bathroom more than 20 times a day, even interrupting his sleep.
"Even if I did eat, it would go right through me and I almost wanted to not eat, because when I did eat, that's when I got the stomach cramps and had to go to the bathroom."
These flare-up periods, which could last a month and struck twice a year, had not responded to medication. At times, Mr. Tytaneck was taking five different drugs at once.
He had run through all the medications designed to treat it, but could no longer keep the bowel disorder in check.
Racked by nearly continual cramps and diarrhea, the St. Catharines native was left facing the daunting prospect of radical surgery to remove much of his bowel.
But Tytaneck was determined to find another solution.
He learned of a stem-cell transplant procedure that had helped some Crohn's patients. The problem was the transplants were all performed in the United States.
Tytaneck, a student at the University of Ottawa at the time, turned his attention to The Ottawa Hospital and its blood and marrow transplant program. He pitched the idea of a stem-cell transplant to hematologist Dr. Harold Atkins, who had performed the procedure previously.
Billy Tytaneck has created a website to spread the word about autologous hematopoietic stem-cell transplants for patients with Crohn's on patients with other conditions, such as multiple sclerosis and lupus.
Atkins agreed to help Tytaneck last winter, making him one of the first Crohn's patients in the country to be treated with the stem-cell procedure.
"I'm much, much better -- easily 100-per-cent improved from what I was last year," Tytaneck said from his home in Collingwood.
"Emotionally, it was difficult to deal with because nobody had been through it before, so I didn't know what to expect."
The doctor who performed Tytaneck's transplant said the procedure carries high risks and should only be considered for patients with the most severe cases of the disease.
"It's not as simple as a blood transfusion," Atkins said in a phone interview from Ottawa.
"There's more to it than that and there are quite a bit of side effects to it."
Part of the procedure involves wiping out the patient's immune system --believed to be at the root of Crohn's disease --with high doses of chemotherapy and radiation therapy.
"That creates quite a few side-effects. The severity of the disease has to warrant using something that strong and that dangerous," Atkins said. Afterward, stem cells previously removed from the patient are infused back into the body to begin building a new immune system.
It takes about 12 months for the immune system to fully regenerate.
"After the first year or so ... the hope is these people won't need to be on other treatments," Atkins said. Five months after his transplant was completed, Tytaneck said his symptoms have diminished considerably.
He has also been able to whittle down the list of several daily medications he used to take to one.
"It's not perfect yet, but my symptoms are improving all the time," he said.
Atkins said more research is required to better understand the lasting impact of stem-cell transplants in the fight against Crohn's disease. Clinical studies are being carried out in the U. S. and Europe.
"The idea is that the Crohn's would essentially go away. The followup isn't long enough to say that would be for a year or two years or 10 years or forever," he said.
But for Tytaneck, the procedure has given him an enjoyment of life he hasn't experienced since he became ill about 12 years ago.
He recently began working as a mechanical engineer for a firm in Collingwood --a job that would have been difficult for him to do prior to the transplant.
"I can go out for a day and do anything without worrying about getting sick," he said.
"It's a huge difference. I enjoy everything so much more."
The procedure was carried out on an out patient basis over three months.
Tytaneck is hopeful raising awareness about the procedure will make transplants more common for other Crohn's patients.
"People don't even know it's an option. I want it to be an option for anyone who's facing surgery," he said.
The severe case of Crohn's disease he'd been battling for half his life was becoming impossible to live with. In April 2007, Mr. Tytaneck, at six-foot-one, was underweight by 20 to 60 pounds, weighing only 130 pounds.
Eating had become a chore to avoid, as he was wracked by poor digestion and constant stomach cramps compounded by terrible bouts of diarrhea that would send him to the bathroom more than 20 times a day, even interrupting his sleep.
"Even if I did eat, it would go right through me and I almost wanted to not eat, because when I did eat, that's when I got the stomach cramps and had to go to the bathroom."
These flare-up periods, which could last a month and struck twice a year, had not responded to medication. At times, Mr. Tytaneck was taking five different drugs at once.
He had run through all the medications designed to treat it, but could no longer keep the bowel disorder in check.
Racked by nearly continual cramps and diarrhea, the St. Catharines native was left facing the daunting prospect of radical surgery to remove much of his bowel.
But Tytaneck was determined to find another solution.
He learned of a stem-cell transplant procedure that had helped some Crohn's patients. The problem was the transplants were all performed in the United States.
Tytaneck, a student at the University of Ottawa at the time, turned his attention to The Ottawa Hospital and its blood and marrow transplant program. He pitched the idea of a stem-cell transplant to hematologist Dr. Harold Atkins, who had performed the procedure previously.
Billy Tytaneck has created a website to spread the word about autologous hematopoietic stem-cell transplants for patients with Crohn's on patients with other conditions, such as multiple sclerosis and lupus.
Atkins agreed to help Tytaneck last winter, making him one of the first Crohn's patients in the country to be treated with the stem-cell procedure.
"I'm much, much better -- easily 100-per-cent improved from what I was last year," Tytaneck said from his home in Collingwood.
"Emotionally, it was difficult to deal with because nobody had been through it before, so I didn't know what to expect."
The doctor who performed Tytaneck's transplant said the procedure carries high risks and should only be considered for patients with the most severe cases of the disease.
"It's not as simple as a blood transfusion," Atkins said in a phone interview from Ottawa.
"There's more to it than that and there are quite a bit of side effects to it."
Part of the procedure involves wiping out the patient's immune system --believed to be at the root of Crohn's disease --with high doses of chemotherapy and radiation therapy.
"That creates quite a few side-effects. The severity of the disease has to warrant using something that strong and that dangerous," Atkins said. Afterward, stem cells previously removed from the patient are infused back into the body to begin building a new immune system.
It takes about 12 months for the immune system to fully regenerate.
"After the first year or so ... the hope is these people won't need to be on other treatments," Atkins said. Five months after his transplant was completed, Tytaneck said his symptoms have diminished considerably.
He has also been able to whittle down the list of several daily medications he used to take to one.
"It's not perfect yet, but my symptoms are improving all the time," he said.
Atkins said more research is required to better understand the lasting impact of stem-cell transplants in the fight against Crohn's disease. Clinical studies are being carried out in the U. S. and Europe.
"The idea is that the Crohn's would essentially go away. The followup isn't long enough to say that would be for a year or two years or 10 years or forever," he said.
But for Tytaneck, the procedure has given him an enjoyment of life he hasn't experienced since he became ill about 12 years ago.
He recently began working as a mechanical engineer for a firm in Collingwood --a job that would have been difficult for him to do prior to the transplant.
"I can go out for a day and do anything without worrying about getting sick," he said.
"It's a huge difference. I enjoy everything so much more."
The procedure was carried out on an out patient basis over three months.
Tytaneck is hopeful raising awareness about the procedure will make transplants more common for other Crohn's patients.
"People don't even know it's an option. I want it to be an option for anyone who's facing surgery," he said.
Tuesday, September 9, 2008
Osiris Prochymal Stem Cell Transplant Update and XBP1 Info
So I have to think that I got more than a placebo. While on the high level I am more relaxed, happy and content than I though possible, I am also under a lot of day-to-day stress and pressure. As almost anyone with Crohn's Disease will tell you, there is a near concrete link between stress and Crohn's Disease flare ups. With my recent stress levels, I am pretty confident that pre-Osiris Prochymal I would be in a flare up. The good news is that I am not. The pain has subsided quite a bit and I am generally feeling really great as it relates to Crohn's. My improvements were enough to qualify me for phase II and as soon as I enter a flare-up, I am ready for 4 more treatments. I am more living with Crohn's now than I am suffering from it, and that is a big step in the right direction! Anyways, to you guys that are in Crones flare-ups or have been recently diagnosed....keep your heads up...and let me know if you have any questions. Be sure to use the search feature on this blog as we have covered alot of topics over the years.
-Scottie
PS - Intersing info here exploring the genetic link to Crohn's
A team of scientists have discovered that the XBP1 gene is a risk factor for developing Crohn’s disease and ulcerative colitis, forms of inflammatory bowel disease (IBD).
The investigators created a mouse model in which they deleted XBP1within the epithelium. They found that the mice spontaneously developed an intestinal inflammation that resembled IBD. The lack of the XBP1 gene disabled the normal communication between intestinal epithelial cells and gut bacteria, resulting in dysfunctional immune response and disease, the researchers explain.
The researchers then reportedly demonstrated that alterations in this gene in the intestinal-lining cells represent risk factors for development of Crohn's and colitis. The study was conducted by scientists from Brigham and Women's Hospital, Harvard Medical School, and institutes in Germany, The Netherlands, and Austria. Results appear in the September 5 issue of Cell.
-Scottie
PS - Intersing info here exploring the genetic link to Crohn's
A team of scientists have discovered that the XBP1 gene is a risk factor for developing Crohn’s disease and ulcerative colitis, forms of inflammatory bowel disease (IBD).
The investigators created a mouse model in which they deleted XBP1within the epithelium. They found that the mice spontaneously developed an intestinal inflammation that resembled IBD. The lack of the XBP1 gene disabled the normal communication between intestinal epithelial cells and gut bacteria, resulting in dysfunctional immune response and disease, the researchers explain.
The researchers then reportedly demonstrated that alterations in this gene in the intestinal-lining cells represent risk factors for development of Crohn's and colitis. The study was conducted by scientists from Brigham and Women's Hospital, Harvard Medical School, and institutes in Germany, The Netherlands, and Austria. Results appear in the September 5 issue of Cell.
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