So in the ultimate good news/bad news case...I went to the doctor last week and because my CDI score was so high, I qualified for another round of 4 stem cell infusions in the Osiris Prochymal study. I begin the week after Thanksgiving. Back to smelling like an onion, the worst side effect of the treatment. I am still not sure if I got a Placebo or stem cells in round one of the Osiris Prochymal study. Keeping my fingers crossed this time. Chances are pretty good given two rounds of treatment that I at least get a 50% dose. Nothing like being a lab rat. In the meantime I continue to have bad days, and OK days. Good days are pretty rare, and lately there have been more bad days (bad cramping, night sweats, 20+ trips to the restroom, etc). I know alot of you out there deal with worse Crohn's Disease Symptoms than I have.....so I am not complaining. Keep your heads up Chronies.
Heading up to Indiana for a week to spend time with family. As always, thanks for checking out my Crohn's Disease blog. Safe travels and I will check in around Thanksgiving.
Tuesday, November 25, 2008
Thursday, November 20, 2008
Good Humira Video and Information
Unforunately I was allergic to Humira, but I have heard wonderful things about Humira helping out other Crohn's Disease Patients. Check it out if you are considering Humira.
HUMIRA:
May help people achieve and maintain remission--that is, stop flare-ups for periods of time. In a clinical trial, 3 times as many patients taking HUMIRA experienced remission at 56 weeks versus those taking a placebo.
Can reduce or help stop many Crohn's symptoms, including painful cramps, persistent diarrhea, and fatigue.
Can work fast--many people experience a significant difference in their symptoms in just 4 weeks.
For Crohn's patients, HUMIRA is taken as just one injection every other week, after your initial starting doses.
I just got an email from Abbot Labs listing some of the side effects of Humira:
Possible side effects of HUMIRA:Serious side effects, which sometimes lead to death, have happened in patients taking HUMIRA.
Serious infections. These infections include TB (tuberculosis) and infections caused by viruses, fungi, or bacteria. Your doctor will examine you for TB and perform a test to see if you have TB. If your doctor feels that you are at risk for TB, you may be treated with medicine for TB before you begin treatment with HUMIRA and during treatment with HUMIRA. Even if your TB test is negative your doctor should carefully monitor you for TB infections while you are taking HUMIRA. Patients who had a negative TB skin test before receiving HUMIRA have developed active TB. Tell your doctor if you have any of the following symptoms while taking or after taking HUMIRA: cough, low-grade fever, weight loss, or loss of body fat and muscle.
Certain types of cancer. There have been cases of certain kinds of cancer in patients taking HUMIRA or other TNF blockers. Patients with RA, especially more serious RA, may have a higher chance for getting a kind of cancer called lymphoma. Some patients receiving HUMIRA have developed types of cancer called non-melanoma skin cancer (basal cell cancer and squamous cell cancer of the skin), which are generally not life threatening if treated. Tell your doctor if you have a bump or open sore that doesn't heal.
Allergic reactions. Signs of a serious allergic reaction include skin rash, a swollen face, or trouble breathing.
Hepatitis B virus reactivation in patients that carry the virus in their blood. Tell your doctor if you have any of the following symptoms: feel unwell, poor appetite, fatigue, fever, rash or joint pain.
Nervous system problems. Signs and symptoms include: numbness or tingling, problems with your vision, weakness in your arms or legs, and dizziness.
Blood problems. Symptoms include a fever that does not go away, bruising or bleeding very easily, or looking very pale.
New heart failure or worsening heart failure you already have. Symptoms include shortness of breath or swelling of your ankles or feet, or sudden weight gain.
Immune reactions including a lupus-like syndrome. Symptoms include chest discomfort or pain that does not go away, shortness of breath, joint pain, or rash on your cheeks or arms that gets worse in the sun.
Call your doctor or get medical care right away if you develop any of the above symptoms. Your treatment with HUMIRA may be stopped.
Common side effects of HUMIRA are: injection site reactions (redness, rash, swelling, itching or bruising), upper respiratory infections (sinus infections), headaches, rash and nausea.
Tuesday, November 18, 2008
Crohn's Doesn't Make you Smarter...But a Crohn's Disease Scholarhip Can!
The Crohn's Scholarship Program is one of the largest pharmaceutical-funded scholarships currently available for Crohn's disease patients. UCB awards a total of $300,000 in one-time scholarships of up to $10,000 to people diagnosed with Crohn's disease who are entering or currently enrolled in college, or to adults of any age returning to school. To date, the company has awarded more than $700,000 to fund people's education. More information on the 2008 winners and applications for the 2009 scholarship program can be found at http://www.crohnsandme.com/.
From the Crohn's and Me site - UCB is proud to once again offer 30 one-time scholarships for up to $10,000 each in 2009. This opportunity extends to participants diagnosed with Crohn’s disease who are seeking an associate’s, undergraduate, or graduate degree, or are enrolled in a trade school educational program.
The deadline for application is February 6, 2009.
This is the fourth year UCB has had the opportunity to support those living with Crohn’s disease with the Crohn’s Scholarship Program. The Program aims to help these students continue their education and live beyond the boundaries of their disease.
UCB, Inc., is a global biopharmaceutical company committed to developing innovative treatments for inflammatory diseases such as Crohn’s disease. We’re dedicated to creating unique programs and tools to aid those with Crohn’s in fulfilling their educational ambitions.
We are proud to sponsor a scholarship program that recognizes and rewards your ability to take control of Crohn's – and not allow it to control you.
From the Crohn's and Me site - UCB is proud to once again offer 30 one-time scholarships for up to $10,000 each in 2009. This opportunity extends to participants diagnosed with Crohn’s disease who are seeking an associate’s, undergraduate, or graduate degree, or are enrolled in a trade school educational program.
The deadline for application is February 6, 2009.
This is the fourth year UCB has had the opportunity to support those living with Crohn’s disease with the Crohn’s Scholarship Program. The Program aims to help these students continue their education and live beyond the boundaries of their disease.
UCB, Inc., is a global biopharmaceutical company committed to developing innovative treatments for inflammatory diseases such as Crohn’s disease. We’re dedicated to creating unique programs and tools to aid those with Crohn’s in fulfilling their educational ambitions.
We are proud to sponsor a scholarship program that recognizes and rewards your ability to take control of Crohn's – and not allow it to control you.
New Information and Advances - Surgery and Crohn's Disease
Thousands of Americans suffering from the chronic inflammatory bowel condition known as Crohn's disease are leading longer, healthier lives due to innovative new surgeries, according to experts at NewYork-Presbyterian Hospital/Weill Cornell Medical Center. "Four out of five Crohn's patients will require some kind of surgery at some point during their lives, but these advanced, often minimally invasive techniques are sparing precious bowel tissue while improving quality of life," says senior author Dr. Fabrizio Michelassi, Lewis Atterbury Stimson Professor and chairman of the Department of Surgery at Weill Cornell Medical College and surgeon-in-chief at NewYork-Presbyterian Hospital/Weill Cornell Medical Center.
He and co-author Dr. Sharon L. Stein, assistant professor of surgery at Weill Cornell Medical College and colorectal surgeon at NewYork-Presbyterian Hospital/Weill Cornell Medical Center, wrote a "state of the science" review in a recent issue of the journal Practical Gastroenterology.As many as 500,000 people in the U.S. suffer from Crohn's disease, which triggers inflammation along the gastrointestinal tract, most typically in the lower bowel. Certain drugs can help ease symptoms, but there is no cure for this chronic illness.
Some of the more severe complications of Crohn's disease include strictures (narrowing of the bowel), abscesses, perforations, fistulas (abnormal, obstructive connections between tissues), hemorrhage and even cancers. These types of complications often require surgical intervention."In the past, this was limited to complex, invasive surgeries that required the removal of whole sections of the affected bowel. But over the past two decades, advances in surgery have changed that paradigm," Dr. Stein notes .Some of the innovations outlined in the review include:
* Laparoscopic Surgery. "Patients -- especially younger patients -- prefer laparoscopic surgery because the small incision involved leaves little external scarring, even after repeat procedures," Dr. Michelassi notes. These minimally invasive techniques also lead to fewer surgery-linked internal tissue adhesions. Laparoscopic procedures do tend to require more training on the part of surgeons, and they can take longer to perform than conventional surgery. "However, they also lead to shorter hospital stays, saving money and getting patients home faster," Dr. Stein notes.
* Strictureplasty. This technique has revolutionized bowel surgery, the experts say. "In the past, surgeons would cut out whole sections of diseased bowel, shortening the organ and thereby limiting gastrointestinal function," explains Dr. Michelassi, a world-renowned pioneer in the technique. With strictureplasty, surgeons leave the affected length of bowel in place but widen it, "much like letting out the seams on a pant-leg," he says. This spares bowel tissue while "restructuring" it, so that intestinal contents can safely pass through.
* Fistula Plugs. Fistulas can be both painful and dangerous, causing intestinal contents to diverge from the anal canal. This often leads to anal incontinence, abscesses and, most seriously, systemic infection. Certain surgeries can drain the fistula tract but for more difficult lesions a new surgical anal plug -- made from grafted porcine tissue -- is placed over the fistula. The plug triggers the growth of local fibrotic tissue that then closes off the fistula tract. "In studies, this approach has proven successful in up to half of Crohn's patients," Dr. Stein says.
These and other surgical advances are giving patients valuable new options against a relentless disease, Dr. Michelassi says. "In our work here at NewYork-Presbyterian/Weill Cornell, we're learning that we can do so much more than we thought we could -- reducing surgical risks, sparing bowel and helping patients have better outcomes," he says.Dr. Stein agrees. "As we learn more, and become more comfortable with these techniques, our success emboldens us to reach for the next generation of advances. Year by year, it's making a real difference in patients' lives."The review, "New Advances in Surgical Treatment of Crohn's Disease," can be found in the April 2008 issue of Practical Gastroenterology. This makes it alot easier for those of us living with crohn's.
He and co-author Dr. Sharon L. Stein, assistant professor of surgery at Weill Cornell Medical College and colorectal surgeon at NewYork-Presbyterian Hospital/Weill Cornell Medical Center, wrote a "state of the science" review in a recent issue of the journal Practical Gastroenterology.As many as 500,000 people in the U.S. suffer from Crohn's disease, which triggers inflammation along the gastrointestinal tract, most typically in the lower bowel. Certain drugs can help ease symptoms, but there is no cure for this chronic illness.
Some of the more severe complications of Crohn's disease include strictures (narrowing of the bowel), abscesses, perforations, fistulas (abnormal, obstructive connections between tissues), hemorrhage and even cancers. These types of complications often require surgical intervention."In the past, this was limited to complex, invasive surgeries that required the removal of whole sections of the affected bowel. But over the past two decades, advances in surgery have changed that paradigm," Dr. Stein notes .Some of the innovations outlined in the review include:
* Laparoscopic Surgery. "Patients -- especially younger patients -- prefer laparoscopic surgery because the small incision involved leaves little external scarring, even after repeat procedures," Dr. Michelassi notes. These minimally invasive techniques also lead to fewer surgery-linked internal tissue adhesions. Laparoscopic procedures do tend to require more training on the part of surgeons, and they can take longer to perform than conventional surgery. "However, they also lead to shorter hospital stays, saving money and getting patients home faster," Dr. Stein notes.
* Strictureplasty. This technique has revolutionized bowel surgery, the experts say. "In the past, surgeons would cut out whole sections of diseased bowel, shortening the organ and thereby limiting gastrointestinal function," explains Dr. Michelassi, a world-renowned pioneer in the technique. With strictureplasty, surgeons leave the affected length of bowel in place but widen it, "much like letting out the seams on a pant-leg," he says. This spares bowel tissue while "restructuring" it, so that intestinal contents can safely pass through.
* Fistula Plugs. Fistulas can be both painful and dangerous, causing intestinal contents to diverge from the anal canal. This often leads to anal incontinence, abscesses and, most seriously, systemic infection. Certain surgeries can drain the fistula tract but for more difficult lesions a new surgical anal plug -- made from grafted porcine tissue -- is placed over the fistula. The plug triggers the growth of local fibrotic tissue that then closes off the fistula tract. "In studies, this approach has proven successful in up to half of Crohn's patients," Dr. Stein says.
These and other surgical advances are giving patients valuable new options against a relentless disease, Dr. Michelassi says. "In our work here at NewYork-Presbyterian/Weill Cornell, we're learning that we can do so much more than we thought we could -- reducing surgical risks, sparing bowel and helping patients have better outcomes," he says.Dr. Stein agrees. "As we learn more, and become more comfortable with these techniques, our success emboldens us to reach for the next generation of advances. Year by year, it's making a real difference in patients' lives."The review, "New Advances in Surgical Treatment of Crohn's Disease," can be found in the April 2008 issue of Practical Gastroenterology. This makes it alot easier for those of us living with crohn's.
Thursday, November 13, 2008
Haha, a Funny Poop Story!
So if you read my post below, you will see how miserable I was with my Crohn's last night. So prior to me being sick here is what happened. Two nights ago I went to Walmart and was perusing the very wide selection of liquid antacids. Malox, Tums, etc. I chose the cheapest one and m
oved on. So last night, I am feeling like crap and decide that I need something bad. So I take a big, big swig of my trusty bottle. In fact I drank about 1/4 of it. Mucho pooping ensued. I was up every hour and it was miserable. So I get home tonight and look at bottle...yeah I bought Phillips Milk of Magnesia. So now 24 hours or so later, my stomach is feeling better. I vow to never OD on laxatives again.
oved on. So last night, I am feeling like crap and decide that I need something bad. So I take a big, big swig of my trusty bottle. In fact I drank about 1/4 of it. Mucho pooping ensued. I was up every hour and it was miserable. So I get home tonight and look at bottle...yeah I bought Phillips Milk of Magnesia. So now 24 hours or so later, my stomach is feeling better. I vow to never OD on laxatives again.My Crohn's Update - Link Between Stress and Crohn's Disease
Well, I continue to undergo major stress. I just went through 5 1/2 hours of mediation with the ex and woulden't you know following this I had a Crohn's flare up. I spent most of my night in the bathroom. I hurt so bad I can barely walk today. I woke up for work an hour early and spent it on the toilet. I made my way to work and have been in the bathroom twice in 20 minutes. Each time I dread going because a certain area is so raw that I cried the last couple of times. Yay, its going to be such a great day.
All I know is that for me personally, the link between stress and Crohn's Disease is very real. I am pretty sure this episode will last long enough to qualify me for the second round of Prochymal in the Osiris Stem Cell Infusion study. I guess thats good news???
All I know is that for me personally, the link between stress and Crohn's Disease is very real. I am pretty sure this episode will last long enough to qualify me for the second round of Prochymal in the Osiris Stem Cell Infusion study. I guess thats good news???
Study says Iron in Water Causes IBD and Crohn's Disease
Hmm, interesting...
The risk of developing inflammatory bowel disease is raised with high iron levels in drinking water. Inflammatory bowel disease (IBD) includes Crohn's disease and ulcerative colitis, which causes inflammation in the digestive tract. The cause of IBD is unknown, and symptoms include abdominal cramps, bloody diarrhea, fever and weight loss.Past studies have linked drinking water to IBD, but most of them focused on the content of different micro-organisms. Researchers from Norway studied the association between the content and quality of water and the incidence of IBD.
They studied 843 patients with suspected IBD and 762 of these were followed up for 5 years. They collected data about the quality of the water– levels of iron, aluminum, acidity (pH), colour, turbidity and coliform bacteria. Data regarding age, gender and degree of urbanization of the study group participants was also taken into account.It was found that iron content was significantly linked with the risk of IBD. For each 0.1 milligram per litre increase in iron, the relative risk for ulcerative colitis and Crohn’s disease increased by 23 percent and 25 percent respectively.
However, no association between IBD and aluminum content, colour, or turbidity in water was found. The age, gender and degree of urbanisation of participants had no impact on the association between iron content and the risk of disease.The researchers explained the reason for the findings by 2 mechanisms.
Firstly, high iron concentration works as a catalyst for oxidative stress, which causes inflammation and/or increases the rate of cell mutations. Secondly, iron content stimulates the growth of bacteria and increases the likelihood of inappropriate immune response in genetically predisposed individuals. Though the risk of developing inflammatory bowel disease, like ulcerative colitis and Crohn’s disease is raised with high iron content in water, further studies may be required to verify these results. - American Journal of Epidemiology November 2008
The risk of developing inflammatory bowel disease is raised with high iron levels in drinking water. Inflammatory bowel disease (IBD) includes Crohn's disease and ulcerative colitis, which causes inflammation in the digestive tract. The cause of IBD is unknown, and symptoms include abdominal cramps, bloody diarrhea, fever and weight loss.Past studies have linked drinking water to IBD, but most of them focused on the content of different micro-organisms. Researchers from Norway studied the association between the content and quality of water and the incidence of IBD.
They studied 843 patients with suspected IBD and 762 of these were followed up for 5 years. They collected data about the quality of the water– levels of iron, aluminum, acidity (pH), colour, turbidity and coliform bacteria. Data regarding age, gender and degree of urbanization of the study group participants was also taken into account.It was found that iron content was significantly linked with the risk of IBD. For each 0.1 milligram per litre increase in iron, the relative risk for ulcerative colitis and Crohn’s disease increased by 23 percent and 25 percent respectively.
However, no association between IBD and aluminum content, colour, or turbidity in water was found. The age, gender and degree of urbanisation of participants had no impact on the association between iron content and the risk of disease.The researchers explained the reason for the findings by 2 mechanisms.
Firstly, high iron concentration works as a catalyst for oxidative stress, which causes inflammation and/or increases the rate of cell mutations. Secondly, iron content stimulates the growth of bacteria and increases the likelihood of inappropriate immune response in genetically predisposed individuals. Though the risk of developing inflammatory bowel disease, like ulcerative colitis and Crohn’s disease is raised with high iron content in water, further studies may be required to verify these results. - American Journal of Epidemiology November 2008
Monday, November 10, 2008
Companies Pay High Price for Employees with Crohn's - UGH
Ugh, gotta love seeing this one come across Reuters. Hoping HR Directors at any company I look at going to don't see this. Ugh, this is actually why I work for the man and don't have my own company any more. It's so hard to find health insurance when you have Crohn's.
A study published today in the Journal of Occupational and Environmental Medicine found that annual medical expenditures for Crohn's disease patients are more than three times higher than those for a matched comparison group of patients. Similar results were found for people with ulcerative colitis.
The study examined both direct medical costs - inpatient and outpatient hospital care, office visits, emergency room visits, and prescription drugs - and indirect costs - absenteeism and short-term disability expenses - for patients with employer-sponsored health insurance. Annual medical expenses for Crohn's disease patients were $18,963 versus $5,300 for a matched comparison group. Ulcerative colitis patients' annual medical expenses were $15,020 versus $4,982 for the matched comparison group.
Over 1 million individuals in the United States are affected by Crohn's disease and ulcerative colitis, which are inflammatory bowel diseases. Many are first affected in their 20s and 30s, during prime working years.
In severe cases, gastrointestinal surgery can be warranted, resulting in high costs. Annual medical costs for patients with a gastrointestinal surgery were $60,147 for patients with Crohn's disease and $72,415 for patients with ulcerative colitis.
Patient samples for the study were selected from the Thomson Reuters MarketScandatabases representing the healthcare experience of almost 100 large U.S. employers. Patients who had an episode of Crohn's disease or ulcerative colitis (involving at least one inpatient admission, one emergency room visit or two outpatient visits) were matched with patients with no indication of either disease but similar in other respects (demographic, health plan, location, and health status characteristics).
The Healthcare business of Thomson Reuters conducted the research in collaboration with researchers from the University of Illinois at Chicago, Emory University and Bristol-Myers Squibb, which funded the research.
"Employers and workers should continue to develop strategies to manage chronic illnesses that can generate significant costs for healthcare services and may affect productivity," said Teresa Gibson, director of health outcomes for the Healthcare business of Thomson Reuters and lead author of the study.
In this case, absenteeism costs were not substantially higher for workers with Crohn's disease or ulcerative colitis than it was for the control group. However, patients with Crohn's disease and ulcerative colitis were somewhat less likely to participate in the workforce, with annual short term disability costs for both conditions exceeding controls by $1,000 per employee.
"These results emphasize the importance of early diagnosis and appropriate treatment to address the costs of disability and lost productivity to employees and employers," said co-author Wayne Burton, M.D., adjunct professor in the Department of Environmental and Occupational Sciences at the University of Illinois at Chicago.
A study published today in the Journal of Occupational and Environmental Medicine found that annual medical expenditures for Crohn's disease patients are more than three times higher than those for a matched comparison group of patients. Similar results were found for people with ulcerative colitis.
The study examined both direct medical costs - inpatient and outpatient hospital care, office visits, emergency room visits, and prescription drugs - and indirect costs - absenteeism and short-term disability expenses - for patients with employer-sponsored health insurance. Annual medical expenses for Crohn's disease patients were $18,963 versus $5,300 for a matched comparison group. Ulcerative colitis patients' annual medical expenses were $15,020 versus $4,982 for the matched comparison group.
Over 1 million individuals in the United States are affected by Crohn's disease and ulcerative colitis, which are inflammatory bowel diseases. Many are first affected in their 20s and 30s, during prime working years.
In severe cases, gastrointestinal surgery can be warranted, resulting in high costs. Annual medical costs for patients with a gastrointestinal surgery were $60,147 for patients with Crohn's disease and $72,415 for patients with ulcerative colitis.
Patient samples for the study were selected from the Thomson Reuters MarketScandatabases representing the healthcare experience of almost 100 large U.S. employers. Patients who had an episode of Crohn's disease or ulcerative colitis (involving at least one inpatient admission, one emergency room visit or two outpatient visits) were matched with patients with no indication of either disease but similar in other respects (demographic, health plan, location, and health status characteristics).
The Healthcare business of Thomson Reuters conducted the research in collaboration with researchers from the University of Illinois at Chicago, Emory University and Bristol-Myers Squibb, which funded the research.
"Employers and workers should continue to develop strategies to manage chronic illnesses that can generate significant costs for healthcare services and may affect productivity," said Teresa Gibson, director of health outcomes for the Healthcare business of Thomson Reuters and lead author of the study.
In this case, absenteeism costs were not substantially higher for workers with Crohn's disease or ulcerative colitis than it was for the control group. However, patients with Crohn's disease and ulcerative colitis were somewhat less likely to participate in the workforce, with annual short term disability costs for both conditions exceeding controls by $1,000 per employee.
"These results emphasize the importance of early diagnosis and appropriate treatment to address the costs of disability and lost productivity to employees and employers," said co-author Wayne Burton, M.D., adjunct professor in the Department of Environmental and Occupational Sciences at the University of Illinois at Chicago.
CElgene Receives Approval to Start Human Testing Stem Cell Therapy for Crohn's
Hi guys, more great news on the stem cell front. Biotechnology giant Celgene Corp said it received approval from U.S. health regulators to start human testing of its experimental stem-cell therapy for the treatment of Crohn's disease. Celgene said clinical development of PDA001, its therapy utilizing human placenta-derived stem cells, would start by the end of the year.
ALSO:
Genzyme Corp said it would co-develop two adult stem-cell products of Osiris Therapeutics including Prochymal, which is being tested in late-stage trials for the treatment of Crohn's disease, among other indications.
Crohn's disease is a chronic and often debilitating inflammatory disease of the colon and large intestine that affects some 500,000 people in the United States and leads to frequent hospitalizations and surgery.
Thursday, November 6, 2008
Not so NICE - UK Law Could Potentially Deny Humira and Remicade
Ugh, see below, apparently the National Institute for Health and Clinical Excellence in the UK is trying to stop funding Humira and Remicade:
A woman with a chronic digestive disease fears she could be denied treatment under government plans to control spending on drugs.Ruth Holmes, 54, of Hartree Way, Kesgrave and her son both suffer from Crohn's disease, a condition that can cause symptoms including vomiting, diarrhoea, weight loss and extreme abdominal pain. But she fears she could be denied suitable treatment under proposals by the National Institute for Health and Clinical Excellence (NICE) to stop funding drugs used to treat acute Crohn's disease.
She said: “It is an absolute outrage. There are so many people going to suffer. I do not think the government does enough for people with Crohn's disease. “It is a life-threatening disease. They have got to think of the people who are suffering and the parents who have got to watch their children go through the symptoms.“It is awful to watch and you do not know what to do for the best, and sometimes you are at your wits' end.”
The drugs Remicade and Humira are commonly used for the treatment of severe Crohn's disease, but NICE has conducted a review of the expensive drugs' cost-effectiveness. At the moment, the decision to supply a patient with the drugs is taken by local NHS Primary Care Trusts on an individual basis.
NICE is due to decide whether to make the drugs available to patients all over the country, or to stop providing it altogether, except to those who already receive it.Kristen O'Leary from NICE said it will be a balanced decision so that all patients, no matter where they live in the country, will have the same rights to the drug. Mrs Holmes, who had a bad reaction to Remicade, is currently trialling a new drug, Certolizumab Pegol, at Addenbrooke's Hospital, Cambridge, but she says when she comes off it, Humira will be the only option available to her.She said her 20-year-old son, who does not want to be named, is currently being treated with steroids but will need to transfer to Humira or Remicade at some point.
Mrs Holmes fears if the new guidelines prevent health authorities from supplying the drug to new patients, she and her son will be left with nothing to prevent their pain.She said: “If they can stop the suffering with the drugs, why would they stop funding them? The next step would probably be to go abroad because I am sure they are not holding them back in America .A charity event to raise money in aid of Crohn's disease sufferers will take place at the Waterfront on Friday.
A woman with a chronic digestive disease fears she could be denied treatment under government plans to control spending on drugs.Ruth Holmes, 54, of Hartree Way, Kesgrave and her son both suffer from Crohn's disease, a condition that can cause symptoms including vomiting, diarrhoea, weight loss and extreme abdominal pain. But she fears she could be denied suitable treatment under proposals by the National Institute for Health and Clinical Excellence (NICE) to stop funding drugs used to treat acute Crohn's disease.
She said: “It is an absolute outrage. There are so many people going to suffer. I do not think the government does enough for people with Crohn's disease. “It is a life-threatening disease. They have got to think of the people who are suffering and the parents who have got to watch their children go through the symptoms.“It is awful to watch and you do not know what to do for the best, and sometimes you are at your wits' end.”
The drugs Remicade and Humira are commonly used for the treatment of severe Crohn's disease, but NICE has conducted a review of the expensive drugs' cost-effectiveness. At the moment, the decision to supply a patient with the drugs is taken by local NHS Primary Care Trusts on an individual basis.
NICE is due to decide whether to make the drugs available to patients all over the country, or to stop providing it altogether, except to those who already receive it.Kristen O'Leary from NICE said it will be a balanced decision so that all patients, no matter where they live in the country, will have the same rights to the drug. Mrs Holmes, who had a bad reaction to Remicade, is currently trialling a new drug, Certolizumab Pegol, at Addenbrooke's Hospital, Cambridge, but she says when she comes off it, Humira will be the only option available to her.She said her 20-year-old son, who does not want to be named, is currently being treated with steroids but will need to transfer to Humira or Remicade at some point.
Mrs Holmes fears if the new guidelines prevent health authorities from supplying the drug to new patients, she and her son will be left with nothing to prevent their pain.She said: “If they can stop the suffering with the drugs, why would they stop funding them? The next step would probably be to go abroad because I am sure they are not holding them back in America .A charity event to raise money in aid of Crohn's disease sufferers will take place at the Waterfront on Friday.
Monday, November 3, 2008
Citadel Cadet with Crohn's Disease - Great Article
Great Article by Jill Coley From the Charleston Post and Courier. I love his quote in the fourth paragraph. That is pretty much they way I look at the good days and bad days with Crohn's.
Cadet James Lewis, a 20-year-old sophomore at The Citadel, doesn't define himself by Crohn's disease. But the digestive disorder can strike any time.
Crohn's disease is an inflammation of the digestive tract lining. Symptoms vary and can be embarrassing. Many suffer severe abdominal pain, weight loss and fatigue.
Cadet James Lewis carries on his life as a cadet at the Citadel even though he suffers from Crohn's disease, a disorder that causes inflammation of the digestive tract and can have embarrassing symptoms.
"It's a random disease. You do not know if you're going to have a good day or a bad day," the Columbia native said. "I always expect to have a good day, and if it's a bad one, I deal with it."
Lewis manages his Crohn's with bi-monthly shots to his stomach and daily maintenance pills. When he started at The Citadel last year, he struggled with whether to tell his peers about the disorder.
"Everyone has something different about them, something they have to deal with," he said. "It's a big part of my life, but I'd not go so far as to say it defines me." With a 3.9 GPA, the business major is on track to graduate in three years. Playing for the tennis team is a bright spot for him, he said.
In October, he was recognized in Orlando, Fla., along with 30 other winners of the UCB Crohn's Scholarship Program. The pharmaceutical company awarded 31 $10,000 scholarships.
After The Citadel, Lewis is eyeing a dual graduate degree program in law and international business administration.
Col. Mark Bebensee, associate dean of the school of business administration, said of Lewis' disorder, "You would never know. It hasn't kept him from being the brightest in the class."
At the beginning of Bebensee's microeconomics course, Lewis filled out an introduction form where he mentioned he had Crohn's. If it wasn't for that, Bebensee said he'd never know. "He's learned to cope very well," he said.
Lewis was diagnosed with Crohn's disease during his freshman year in high school.
Although the cause of Crohn's disease is not fully understood, many experts say the immune system plays a role, attacking the gastrointestinal tract.
While there is no known cure for the disease, there are treatments, including medication and surgery, that can offer relief from symptoms.
About 20 percent of people with the disorder have a relative with it, too. But in Lewis' case, he is the only one in his family, he said.
At first, Lewis suffered from cramps, but didn't think much of the disease, he said. Then the flare-ups began. A flare-up is an eruption of ulcers, leading to painful cramping.
During flare-ups, digestion is disrupted, and the body fails to extract nutrients from food. Lewis once lost 20 pounds during an episode.
Freshman year at The Citadel can be a particular challenge for someone with Crohn's. The rigor and stress might trigger flare-ups.
Lewis had about eight last year, more than twice what he averaged before starting at the military school.
Infusions of a steroid and immunosuppressive medicine can treat his flare-ups, he said, but slowing his immune system leaves him open to colds and sinus infections.
"If I was in any other school, I'd stay in bed all day. At The Citadel, I can't," Lewis said.
Crohn's disease is an inflammation of the digestive tract lining. Symptoms vary and can be embarrassing. Many suffer severe abdominal pain, weight loss and fatigue.
Cadet James Lewis carries on his life as a cadet at the Citadel even though he suffers from Crohn's disease, a disorder that causes inflammation of the digestive tract and can have embarrassing symptoms.
"It's a random disease. You do not know if you're going to have a good day or a bad day," the Columbia native said. "I always expect to have a good day, and if it's a bad one, I deal with it."
Lewis manages his Crohn's with bi-monthly shots to his stomach and daily maintenance pills. When he started at The Citadel last year, he struggled with whether to tell his peers about the disorder.
"Everyone has something different about them, something they have to deal with," he said. "It's a big part of my life, but I'd not go so far as to say it defines me." With a 3.9 GPA, the business major is on track to graduate in three years. Playing for the tennis team is a bright spot for him, he said.
In October, he was recognized in Orlando, Fla., along with 30 other winners of the UCB Crohn's Scholarship Program. The pharmaceutical company awarded 31 $10,000 scholarships.
After The Citadel, Lewis is eyeing a dual graduate degree program in law and international business administration.
Col. Mark Bebensee, associate dean of the school of business administration, said of Lewis' disorder, "You would never know. It hasn't kept him from being the brightest in the class."
At the beginning of Bebensee's microeconomics course, Lewis filled out an introduction form where he mentioned he had Crohn's. If it wasn't for that, Bebensee said he'd never know. "He's learned to cope very well," he said.
Lewis was diagnosed with Crohn's disease during his freshman year in high school.
Although the cause of Crohn's disease is not fully understood, many experts say the immune system plays a role, attacking the gastrointestinal tract.
While there is no known cure for the disease, there are treatments, including medication and surgery, that can offer relief from symptoms.
About 20 percent of people with the disorder have a relative with it, too. But in Lewis' case, he is the only one in his family, he said.
At first, Lewis suffered from cramps, but didn't think much of the disease, he said. Then the flare-ups began. A flare-up is an eruption of ulcers, leading to painful cramping.
During flare-ups, digestion is disrupted, and the body fails to extract nutrients from food. Lewis once lost 20 pounds during an episode.
Freshman year at The Citadel can be a particular challenge for someone with Crohn's. The rigor and stress might trigger flare-ups.
Lewis had about eight last year, more than twice what he averaged before starting at the military school.
Infusions of a steroid and immunosuppressive medicine can treat his flare-ups, he said, but slowing his immune system leaves him open to colds and sinus infections.
"If I was in any other school, I'd stay in bed all day. At The Citadel, I can't," Lewis said.
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