Tuesday, December 30, 2008
Right now there are millions of individuals whose lives are directly dependent on the rate at which new drugs come to market. I'm one of them. I'm fighting for my life.
To date, half of my intestine has been removed to manage Crohn's disease. Last year, at age 23, I enrolled in a clinical trial for a treatment that could save my life: an adult stem-cell therapy that helps damaged intestinal tissue regenerate from the relentless inflammation and scarring caused by Crohn's.
The sponsor, Osiris Therapeutics, reported that Crohn's patients in the therapy's Phase II trial all experienced clinical improvement after receiving the cells. A Phase III trial for the treatment is now nearing completion, but Food and Drug Administration (FDA) approval could be years away, despite its FDA "fast track" designation.
In accordance with antiquated FDA policies, the Phase III trial is randomized with three groups of patients, and double-blinded, which means neither the doctors nor patients are told what treatment is being administered. One group received full-strength stem cells, another received half-strength, and a third got a placebo (the proverbial "sugar pill"). It appears I got the placebo.
Foregoing all other treatments, I received the four scheduled infusions, and yet my disease progressed with a vengeance. In a matter of weeks, I became dangerously malnourished. I've since been readmitted to the hospital countless times, as my doctors continue to plead with Osiris for information. But Osiris has refused, citing adherence to FDA protocol.
I am now a lab rat. I have no right to know what happened to me in the study, nor do I have a right to try the promising treatment as my health deteriorates. It doesn't have to be this way.
Under the Fifth Amendment's guarantee that "No person shall be deprived of life, liberty or property without due process of law," a critically ill patient should have access to a potentially lifesaving drug that has been deemed safe for human consumption, if the patient agrees to bear the risks involved. But earlier this year, the Supreme Court refused to hear a case on the issue, denying countless patients their right to pursue life.
Thankfully, some members of Congress have stepped in to ensure our rights as patients. In May, Sen. Sam Brownback (R., Kan.) and Rep. Diane Watson (D., Calif.) introduced the Access, Compassion, Care and Ethics for Seriously Ill Patients Act. If passed, this bipartisan legislation will begin to restore the rights of millions of patients by widening access to promising investigational drugs.
Human clinical research is an intricate scientific and moral process, but it does not justify taking immoral advantage of patients. Tragically, FDA and Osiris think it does.
Typical approval protocols almost always guarantee patients taking the placebo access to the actual drug -- at the very least -- after the study has ended. But in what appears to me a deliberate act of cruelty, Osiris hung its patients out to dry without any recourse, refusing to confirm which patient got what. The FDA has endorsed Osiris's decision by enabling it to proceed with the study.
Withholding a potential cure is just as bad -- if not worse -- than the potential death sentence of a serious illness. If patients like myself have the audacity to put their lives on the line for the betterment of science and those in their predicament, their decision should not only be embraced, it should be rewarded.
Furthermore, trials without ethical recourse can lead to inadequate and incomplete data, compromising the integrity of the study. If trial patients are treated like lab rats, they won't feel obliged to cooperate unconditionally and report accurate data -- something the FDA and the drug industry rely on heavily, but have failed to consider.
Everyone agrees it is a fundamental right for patients to dictate their course of treatment with FDA-approved drugs. So why do the rules evaporate at the most critical moment, when the only life-preserving options are highly promising investigational drugs?
Tuesday, December 23, 2008
Holidays + Financial Issues + Ending Stem Cell Study Due to Ineffectiveness + Losing your job 3 days before Christmas. So yeah, I will be again testing the theory of stress causing a Crohn's Flair up!
Awesome, yes my stress level just rose again. I just lost my job 3 days before Christmas. Anyways, should give me some more time to write some informative and entertaining posts for my Crohn's Disease Blog! Update coming soon. Merry Chistmas to you all. God bless and say healthy.
Oh, and if anyone needs any website work or online marketing, let me know and I can send you a portfolio or we can chat!
Tuesday, December 16, 2008
Wednesday, December 10, 2008
Thursday, December 4, 2008
Jaguars quarterback David Garrard has learned to live and play pro football with Crohn's disease
It was the offseason, and he was losing weight. He didn't know what was wrong. It was 2004 and, even after being told he had Crohn's disease, Jacksonville Jaguars quarterback David Garrard wasn't sure what that entailed. He learned soon enough he was dealing with a bowel disease in which the lining of one's digestive tract becomes inflamed, causing severe diarrhea and abdominal pain.
This season, Garrard is taking part in the "In the Zone For Crohn's" program, which involves a $10,000 donation to the Crohn's & Colitis Foundation of America for every touchdown he scores or TD pass he throws. I talked Tuesday with Garrard about living with Crohn's.
BS: How is your life affected by the disease?
DG: Right now, I'm doing great. I don't have any signs or symptoms or anything. I can pretty much lead a normal life. The medication I'm on and the surgery I had four years ago have helped keep me symptom free.
BS: How would you deal with Crohn's if it acts up during a game?
DG: It's been four years now, and I go in and get a wonderful colonoscopy every year. It's been clear every year. I don't worry about it anymore. I'm not going to let it have control over my life. If it comes back, I'll have to do something else about it.
BS: Did you ever worry the disease could keep you from playing in the NFL?
DG: When I first heard about it, I didn't know it was anything. I thought the doctor would give me some pills and I'd be done with it. I learned it was more severe. After me and my wife started researching it, and people heard I had it and started sending me information. I started to get concerned. It's not something you can play with if you deal with it on a day-to-day basis. I lost about 40 pounds. I said I want to do whatever it takes to heal myself and get the disease out of me. Having surgery and medication helped.
BS: What was involved in the surgery?
DG: They removed about a foot of my intestines. There's no cure for Crohn's. Crohn's can come back. After six months, Crohn's was coming right back. I went on a medication, Remicade, and I haven't had anything since. I've been normal.
BS: You were losing a lot of weight. Before you knew what the problem was, were you afraid you were dying?
DG: Definitely. When I lost all that weight was when I was just trying medicine to heal it. It was so far advanced. The body has disease on the inside of the intestines.
BS: Is Crohn's a disease that people need to learn not to be embarrassed about?
DG: That's why I feel the Lord has blessed me with it. I'm not afraid about it. I'm not shy about it. But a lot of people are shy about it. It's tough being in middle school and high school and having to go to the bathroom a lot or vomiting a lot. Kids are not comfortable with that. Adults are not comfortable, either. If you say cancer or AIDS, everybody knows what you're talking about. If you say Crohn's, people don't know what you're talking about. I've met a lot of kids who are dealing with it. I met a kid last week from Make-A-Wish, and he wanted to come down from New York to meet me.
BS: A little football talk: There was talk that last week's game against Tennessee was a make-or-break game for the Jaguars. You lost that game. So what does that make Sunday's game against the Vikings?
DG: We're pretty much in playoff mode right now. We've got to win every game from here on out to give ourselves a shot to go to the playoffs
BS: As you know, your assistant head coach/tight ends used to be the Vikings' coach. How is Mike Tice to work with?
DG: He's great. He really understands the game. He knows exactly what he's talking about. He's a fun guy. He's very, very helpful. He wants to help every position.
BS: What helpful advice has Mike Tice given you?
DG: Just be myself and play my game. Not try to go outside of what I normally do. He had Daunte Culpepper, a quarterback he loves to death. He always talks about him. He said Daunte would do what he could do and not try to please everybody. Just get the job done.
Tuesday, December 2, 2008
For people with digestive issues, life tends to revolve around what you can and can't eat and how far away from the nearest bathroom you dare to venture. That's certainly the case with Crohn's disease, which along with ulcerative colitis is one of the two most common forms of inflammatory bowel disease. Symptoms include wrenching stomach pain soon after eating (typically in the lower right side) and relentless diarrhea. It's relatively rare, but a new research finding suggests that people with Crohn's are seven times more apt to carry bacteria that cause a related gastrointestinal disease in cattle. The bacteria -- Mycobacterium avium subspecies paratuberculosis or MAP -- has been found in milk in American supermarkets, and some studies have found it in meat and cheese, raising the possibility that it may be passed up the food chain to people.
IT'S GUT WRENCHING
Whether or not bacteria such as MAP cause disease in the intestinal tract is largely a matter of threshold, explains Daily Health News contributing editor Andrew L. Rubman, ND. A person with a healthy, intact digestive tract will likely be able to resist infectious bacteria. But the large intestine is the body's center of immunity, and when the digestive tissue becomes damaged and inflamed, it becomes more susceptible to invasive microorganisms, be it MAP or the increasingly infectious species of E. coli, Salmonella, and other causes of food poisoning. If the balance of healthy versus harmful bacteria is disrupted and/or tissue is damaged, people become less able to resist disease and it becomes more difficult to treat. Dr. Rubman and I talked more about Crohn's disease in general, and about natural support for people with this problem. What causes Crohn's Little is known about the causes of Crohn's disease, although family history, an overactive immune system and inflammation response, and environmental triggers are all believed to play a role.
It differs from ulcerative colitis (which causes similar symptoms) because inflammation is deeper in the intestinal wall and also potentially affects the entire gastrointestinal tract from mouth to anus. Ulcerative colitis primarily affects the colon and small intestine. There's no known cure for Crohn's and remedies offered by conventional medicine are riddled with problems. In September 2008, the FDA ordered stronger warnings for common Crohn's drugs -- infliximab (Remicade), adalimumab (Humira) and certolizumab pegol (Cimzia) -- after an association with the risk of developing fungal and yeast infections such as Candidiasis was found. Because conventional treatments have significant side effects -- even when they work, and they don't always -- more than half of people with Crohn's disease turn to natural therapies.
Since Crohn's disease affects different people in different ways, Dr. Rubman individualizes treatment for each patient, working in collaboration with his/her gastroenterologist -- a strategy he suggests for all Crohn's patients since a combination of natural and mainstream treatments seems to be most effective. Dr. Rubman's natural solutions include...
Health requires maintaining a balance between good and bad bacteria in the digestive tract. Poor diet, stress or a digestive disorder such as Crohn's can result in a takeover of the system by "bad" bacteria, resulting in symptoms such as diarrhea and gas. To restore a proper floral balance, Dr. Rubman frequently prescribes a seven- to 10-day course of a probiotic supplement composed of Lactobacillus acidophilus and Bifidobacterium bifidus. However, he notes that it is important to have a stool test before treatment, in order to ensure the proper probiotic formula is administered.
2. Fish oil.
A small British study found that fish oil taken with antioxidants may help reduce the inflammation associated with Crohn's disease. Eat fatty fish such as salmon, mackerel or sardines two or three times a week. In addition, Dr. Rubman often prescribes one or more grams of an EPA-DHA fish oil capsule or liquid daily.
3. Vitamin B-12.
When the bowel has been damaged by Chron's disease, it may no longer effectively absorb B-12. If you are tired and rundown, ask your doctor to test you. Dr. Rubman prefers to prescribe sublingual B-12 rather than B-12 shots. "It's as effective, less expensive and certainly more comfortable," he notes.
Acupuncture has traditionally been used to treat inflammatory bowel disease in China and is meeting with increasing mainstream acceptance in the US. A small German study suggests that acupuncture may help improve quality of life and general well-being in people with Crohn's disease by modulating symptoms and may even result in a small decrease in inflammatory markers in the blood. Find an acupuncturist in your area at the Web site of the American Association of Acupuncture & Oriental Medicine at http://www.aaaomonline.org/45000.asp.
5. Focus on whole foods, fresh fruits and vegetables.
A diet that contains lots of processed and fast foods -- like white bread, sugary desserts, etc. -- stresses the bowel and may trigger inflammation and worsen symptoms of Crohn's disease. Disease-causing microorganisms thrive on foods like these. Many people with Crohn's report that they feel better when they eliminate or significantly cut back on processed foods and place a greater emphasis on whole foods, fresh fruits and vegetables and moderate amounts of protein. Avoid milk and dairy products as well as trans fats, as they can also irritate the intestinal track.
Many people with Crohn's find that their symptoms worsen during stressful periods. If you find this to be the case, take steps to effectively manage stress. Do whatever works best for you -- whether that is yoga or meditation or dancing or tennis.
7. Stay away from colonics.
Many people are tempted to turn to this "quick fix," but Dr. Rubman warns that colonics can backfire and worsen symptoms. The large intestine requires a healthy balance of microorganisms to function properly, and colonics indiscriminately wipe out the good with the bad under the thinly supported premise of detoxification. To feel more in control of your disease and your life, learn more about Crohn's and connect with others who are going through the same things you are. Join message boards, chats, blogs and support groups (online or offline) at Web sites such as http://www.ccfa.org/, or those listed at http://www.crohns-disease-and-stress.com/support.html and http://ibdcrohns.about.com/od/onlinesupport/a/supportgroups.htm. Acknowledging that a diagnosis of Crohn's disease is never good news, Dr. Rubman urges those who have the problem to be optimistic -- it can often be controlled without drastic drugs or a draconian diet, and quality of life need not suffer.
Andrew L. Rubman, ND, director, Southbury Clinic for Traditional Medicines, Southbury, Connecticut.
American Society for Microbiology, http://www.asm.org/
Tuesday, November 25, 2008
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.
Thursday, November 20, 2008
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.
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
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.
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
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???
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
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.
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.
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
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
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.
Thursday, October 30, 2008
An excellent discussion on the topic can be found at the medhelp site.
Anyways, I have touched on this subject before, but it is a hot topic for me right now and would love to know who else has Crohn's and Arthritis and what you do to treat it.
Wednesday, October 29, 2008
Check out the article here.
Friday, October 24, 2008
I have a lot of trouble with vitamins. Maybe it is just me, but multi-vitamins tend to aggravate my stomach (cough, cough diarrhea!). I found a new multi-vitamin in a liquid format that seems to work really well for me. If you are looking for a good vitamin..check out Nature's Plan, Source of Life vitamins. I found them onsale for 40% off at Amazon. (click the link to the left). Anyone else have any suggestions for good vitamins for people with Crohn's disease?
Monday, October 20, 2008
People with inflammatory bowel disease (IBD) who are taking immunosuppressive drugs fall into a high risk group. Some immunosuppressive drugs include:
Cyclosporine (Neoral, Sandimmune)
Mercaptopurine (Purinethol, 6-MP)
If you are taking any of these drugs, or your immune system is being suppressed by another drug, the optimum time to get vaccinated against the flu is from late October to mid-November. A flu shot takes one to two weeks to be effective.
Also, any person with IBD, even if they are not taking immunosuppressive drugs, might want to talk to a doctor about getting a flu shot. As with any chronic condition, IBD causes the body to be under stress. This makes it harder for the body to fight off both colds and the flu. After all, struggling through one major health problem is bad enough without complications from other illnesses.
Anyone who lives with a high-risk person should get the flu shot along with the high risk individual.
Anyways, I am getting my flu shot today.
Thursday, October 16, 2008
Biotechnology firm Elan Corp. said Friday it is closing its offices in New York and Tokyo during the first quarter as it realigns operations.
Elan said it will eliminate an unspecified number of positions and revise its marketing activities for Tysabri as a treatment for Crohn's disease.
Elan said it will direct additional capital toward research and development. Elan is transitioning from a traditional sales model to one based on clinical support and education, the company said in a statement.
First, about the drug: Tysabri is an antibody, a protein that triggers specific reactions from the body's immune system. Doctors think it helps some people with MS or Crohn's because of way it interacts with natural chemical markers on the surface of cells affected by the diseases. The same markers are found on the myeloma cells that Mr. Baron has, so doctors think the drug may help treat that cancer.
The issue: Dallas lawyer and Democratic Party fundraiser Fred Baron is dying of cancer -- and fighting a drug company for use of an experimental medication, according to his son, Andrew Baron.
Mr. Baron's family says it has enlisted some famous names to lobby on his behalf: Lance Armstrong, the bicyclist and cancer survivor; Bill and Hillary Rodham Clinton; Sen. John Kerry, D-Mass; and Sen. Edward Kennedy, D-Mass., who has brain cancer.
No one can accuse Biogen Idec of playing favorites. The company has been under assault by luminaries from Bill and Hillary Clinton to Lance Armstrong, who are trying to get Biogen's Tysabri drug for Fred Baron, a legal bigwig who's dying of multiple myeloma. Tysabri is in Phase I testing in multiple myeloma patients. But Baron doesn't meet the trial criteria. And Biogen has an ironclad policy of refusing the med for so-called "compassionate use."
Biogen's reasoning is rooted in Tysabri's complex biography. As you all know, the drug was hailed as a major breakthrough for multiple sclerosis patients after its first launch, but then was pulled off the market in February 2005 because of links to a potentially fatal brain infection, PML. The drug was reintroduced in 2006 under a restrictive access program. Since then, Tysabri has won a broader market, with an approval to treat Crohn's disease. It's also seen a couple of new cases of PML in Europe; those cases were added to Tysabri's labeling.
Biogen CEO Jim Mullen has held up under the assault of publicity ginned up on Baron's behalf. Calls from the likes of Armstrong, Ted Kennedy, the Clintons, John Kerry and Henry Waxman haven't swayed him. The company doesn't want to set a precedent by allowing Baron to use Tysabri, given the PML risks--and the risk to Tysabri's future should Baron experience an adverse reaction. "We want to protect access for patients who are on the drug now and rely on it," a Biogen spokeswoman told Pharmalot. "We feel like we can't make an exception in this case."
Tuesday, October 14, 2008
Crohn's and Drinking, Crohn's and Sex - Both Can make for Funny Crohn's Stories for Comedian Ben Morrison
Rick:And you mean drinking alcohol?
Mr. Morrison:Yeah. I mean, if we are being honest right here especially for dating, what do you do on a date? You go to a bar. So that's part of the equation too, as far as what people do on dates, what can and can't you do and how will that affect it. I have vivid memories of being back in New York, and a girl that I was seeing was waiting in my bedroom, and we were going to get intimate. And I remember being in the bathroom, and at that point, the obstruction had flared up again like there was a baby in my stomach. I could see it. Whenever I obstruct, I distend, like my stomach sticks out. And moving hurts because, basically 30-some odd feet of intestine above the actual colon is filled, and it ain't going anywhere, so moving hurts.
And, you know, I don't know how you make love, but I like to move around a little bit. And it's kind of difficult when, (a) you are worried about farting. When you jostle enough, it's going to happen. And, (b), you're like I don't really know if I can enjoy this much when I feel like I have ten extra pounds in me. So I remember being in the bathroom just on the can just hoping I can get something out so I could enjoy this night of sex.
Rick: When it comes to communication, Ben, do you think that men and women communicate differently and that it might be especially tough for men?
Mr. Morrison: For women, it is tough. I know for a fact it is, because guys at the very least have the benefit of punching their best friend in the arm and farting on his face, which is really fun. I love it. It's a lot of fun to do. And any guy knows that. Girls don't.
I don't even think the girls fart. I mean, I know they do. I don't really hear it much. I know it must happen. But that puts them, unfortunately, at a definite conversational disadvantage because there is no societal, accepted humorous way to even tell that, “Oh, hey, that was me. You might want to leave the room for the next ten minutes.”
So yeah, it makes it more difficult. But I swear to you if I met a girl who has Crohn's or whatever, and just was hanging out with me and just went like, “Man, you would not believe what I did to that toilet,” I think I would be in love, you know. The confidence that shows is huge, and confidence is everything in the world, at least as far as your advancement in it.
Rick: But what about that urge to immediately go?
Mr. Morrison:If that is when they cut out your ileum, then yeah, I have had it. But as far as external accoutrements, no.
But the need to go, my answer to that is pretty clear. Go to the bathroom right before walking in the bedroom. Like if you are on the bed and start kissing and clothes start coming off, say, look into her eyes and say I will be right back. And then run in the bathroom, brush your teeth, smell better than when you left, and use the bathroom so you know that whatever might be residing in your colon ain't. So if you feel like you have to go, it doesn't matter. Nothing is going to come out because there's nothing there. So, you know, worry less about that actual sensation than what would happen if that were an actual problem. Does that make sense?
The thing is, no one really minds you excusing yourself to go to the bathroom. At the risk of getting a little dirty here, they are like, “Oh, he's probably going to go to the bathroom and clean himself up a little bit.” No one minds that. Especially before sex.
Rick:Let's get a question from Washington State. “When you wanted to get intimate with a woman, have you ever had trouble getting an erection because you were so worn out from your symptoms or because you were in pain? And if so, how did you handle the situation?”
Mr. Morrison:Well, that's a tough situation. I've certainly been in that situation. Every guy has. If you haven't, you're lying. I mean if I am distended, like specifically if I'm really bloated, if I am obstructing for a couple days and my stomach begins to push out, I will steer myself away from organizing a wild night of sex. And if you are dating someone - it's not like an I need to perform right now type of thing, wait until the morning. Give yourself a good night's sleep.
And if it's a one-night stand, which I have certainly had, and as long as we are talking about it, that's a much trickier situation, and you might have to bite the bullet and just say, “Look, this isn't going to happen right now.” Can I take care of you?
Full article here: http://www2.healthtalk.com/go/crohns-disease/webcasts/crohn-s-sex-and-intimacy-comedian-ben-morrison-s-guide-for-men-and-the-people-who-love-them/transcripts/3
Monday, October 13, 2008
Ayr Utd star David Gillies' battle to beat pain of Crohn's Disease
By Maria Croce, Daily Record
AYR United striker David Gillies was warned he might never play football again after being diagnosed with bowel disease Crohn's. But he vowed to prove doctors wrong and now he wants to inspire other sufferers to follow their dreams rather than give in to the condition.
David, 25, and girlfriend Leanne Robbie, 23, live in Ayr with their four-year-old son Brandon.
They're expecting another child and have much to celebrate now David's fit again. But last year it was a different story with David facing the prospect of losing his footballing career just as it was about to take off.
Last June he began suffering crippling cramps in his stomach. "It felt like a really sharp pain - like a knife being twisted in my stomach," he said. "It would last a couple of seconds and take my breath away. Sometimes it would happen when I was training - but it was most days."
But he battled through his football training while doctors were baffled by his condition.
"It took forever to find out what was wrong with me," explained David.
"Doctors said it went against me because I was so fit and played football - that made it difficult to diagnose because I continued to train even though I was in pain.
"I pushed myself through. And when I went to the doctor they'd say, 'On a scale of one to 10, what's the pain like?' And I'd say, '10'. But he'd look at my notes and say, 'It can't be a10 because you're training every day'. When you play sports you just get used to playing with injuries. I was enjoying it so I kept doing it and tried to ignore the pain.
"I can remember the day it started in June. One evening I just threw up at home but I felt fine the next day and went training. "I was with Airdrie and although I trained fine, I started getting stomach cramps and could hear my stomach gurgling. I thought it was because I'd changed my diet and started eating more healthily.
"But then four weeks into the season it got worse. I went to the doctors but they told me it was a stomach bug. But the pain kept returning."
Over the next six months David went to hospital six times for investigations including a barium X-ray.
"I'd been playing with Auchinleck juniors and this was my big move to Airdrie," he explained. "Before I'd been scoring lots of goals. But I went to Airdrie and ended up on the subs' bench. I felt I was so much better than I was showing. I couldn't make excuses for feeling terrible, so I'd just try to train. But I knew I wouldn't be able to last 90 minutes playing because I felt so bad."
Then in December he underwent an endoscopy. A tiny telescope was used to look inside his intestine - where doctors discovered a blockage.
"I remember hearing the doctor saying, 'What's that?' during the procedure. They weren't expecting a blockage, but the camera couldn't get through.
"Even after that, they still didn't know what it was at first. I found out afterwards doctors had thought it could be cancer.
"I must admit when I heard their reaction to the blockage I feared the worst and assumed it must be cancer. I was told to stay at home for a week. But I'm optimistic and told myself no matter what was wrong I'd get through it.
"Then a few days later when they told me it was Chron's it was a relief in a way to finally know what was wrong and know it wasn't cancer. But I didn't know that much about the condition - although I knew there was no real cure. And I was warned I'd probably need an operation.
"My first question was whether I'd have a colostomy bag. Doctors said I might need one as a temporary measure - but luckily that didn't happen.
"Then doctors told me I wouldn't be able to play football again. They said it was hard to believe I'd ever be fit enough to play any football again.
"But I refused to believe them and vowed to play again. Looking back I can see why they thought I'd never play again.
But then I felt they didn't know what I was capable of doing.
"I thought nothing can be worse than what I've already been through. But I did wonder a few times whether it was all worth it to keep pushing myself to play.
"I'm also a qualified plumber and have my own plumbing business so at least I knew I had another job to do.
"My girlfriend Leanne would watch me in pain and question why I was putting myself through it just to play football.
"But I always wanted to be a footballer and I love playing. When I got the chance to play for Airdrie last summer it was a massive step because it was full-time. But then it took the shine off it because I started to feel really ill. I couldn't enjoy it as much as I should have."
David underwent an operation on December 23 to remove part of his intestine and got home on Christmas day.
He discovered his heart had momentarily stopped during the procedure. "They under-estimated how slow my heartbeat was because I was fit. I told the boys at football afterwards and they nicknamed me 'Death'."
He has to take special drinks, is free of pain and was back playing two months later for Airdrie.
David feels he's finally fit again and has signed for Ayr United. He jumped at the chance to talk to youngsters with Crohn's (chrones, chron's, chrones, crones).
He spoke at the Glasgow Science Centre at an event by the Catherine McEwan Foundation - set up by Scot Derek McEwan in memory of his late mother, who suffered from Crohn's.
The foundation's aim is to help young Scots with the condition and work with the charity the National Association for Colitis and Crohn's.
Inflammatory bowel diseases like Crohn's and ulcerative colitis affect about one in 400 people in the UK.
Diagnosis is usually made between the age of 10 and 40 and you have a higher chance of developing either illness if you have a close relative with the condition.
Crohn's causes inflammation of any part of the gut - the oesophagus, stomach and small and large intestine. Typical symptoms can include pain, ulcers, diarrhoea and feeling unwell.
The outlook depends on which part of the gut that's affected and the severity and frequency of symptoms. But most people will require surgery at some point.
For David the future is bright. "It doesn't hold me back at all now," he explained.
"And when I spoke to the young people it was good to hear I'd given them hope. I heard that a lot of kids think that once they've got it they can't do much - but that's really not the case. There are lots of different medications you can take to help you lead a normal life. I got this at 24 - but
I felt for the kids who were so much younger finding out they've got it.
"But gold medalist rower Steve Redgrave has got it too. He's an inspiration - I just play for Ayr United. I wanted to say to the kids with Crohn's not to give up their dreams."
Wednesday, October 8, 2008
The Johnson & Johnson company said the Sonic trial has shown that more patients taking either Remicade alone or together with azathioprine experienced steroid-free remission and mucosal healing, compared to those receiving azathioprine alone.At week 26, 57 per cent of patients receiving Remicade combination therapy and 44 per cent receiving it as a monotherapy achieved steroid-free remission, the firm said, compared with a figure of 31 per cent of patients receiving azathioprine alone."
Findings from the Sonic trial have the potential to challenge the treatment protocol for Crohn's disease as these data show that introducing Remicade earlier may result in more patients achieving steroid-free remission and complete mucosal healing," suggested lead investigator Dr Jean-Frederic Colombel, professor of hepatogastroenterology at Centre Hospitalier Universitaire in Lille.
According to Dr Colombel, the results reinforced the efficacy and safety profile of the medicine. NHS Direct states that Crohn's disease is an inflammatory condition which can affect any part of the gut and affects approximately one in 1,500 people.
Monday, October 6, 2008
Had a great weekend...enjoyed some good food (nothing towards the top of the foods Crohn's patients should avoid list) and drank a few beers each night. A few...not 2 or 3, but not 20 or 30. All weekend I pretty much planned on getting good sleep Sunday night so I could start the week rested. Yeah right, I got in bed at 10:30 and immideately felt pain and pressure. You guys with Crohn's know exactly what I mean. Long story short, I fell asleep sometime after 3 am, only to wake up at 7 still hurting.
So the postive take away is that I am (with help, support and a teamate) turning over a new leaf and focusing on eating better and drinking less beer! There I am done. Thanks for reading the blog. Oh, and by the way, I relaunched Roystory.com, my personal website.
When the Akers family of West Chester were selected by the show for a new home in July, there was a lot of attention on the two Akers' girls. They are living with Spinal Muscular Atrophy, a disease that causes their muscles to deteriorate.
The father Greg Akers and son Christian Akers also have health problems. They have Crohn's disease. It's a painful, unpredictable bowel disease that attacks the digestive system.
"It's like having the flu for weeks, months," said Shellie Doub, a Liberty Township woman who has two children with Crohn's disease.
"It really limits what they can do," said Shellie Doub of Liberty Township.
"If people could just extend those little kindnesses," said Doub, "to just come over and watch a video with them instead of be disappointed that they can't go out and play paintball or do the things other kids are doing."
Rachel Spradlin of the Cincinnati Area Crohn's and Colitis Foundation says 1.4 million Americans have been diagnosed with Crohn's or colitis. The two diseases are similar.
Spradlin said when the diseases are in remission you can live a normal life.
Medicine can reduce symptoms or the time between attacks but there is no cure.
She said people don't know much about Crohn's and colitis because it's not something people feel comfortable talking about.
"It's very personal," said Spradlin. "People don't go around saying they've been in the bathroom 30 times that day."
Wednesday, October 1, 2008
Also I had to share the story of when she just asked her 9 year old what Crohn's disease was. His response: "Crohn's Disease is a disease that makes you crap yourself."
Update: I did find one on discovery.com that represents the guy's battle with Crohn's. Click the crohn's tattoo image for details.
Monday, September 29, 2008
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.
Wednesday, September 24, 2008
NFL Quarterback David Garrard - Overcoming Crohn's Disease - The most amazing bloopers are here
Tuesday, September 23, 2008
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.
Tuesday, September 16, 2008
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
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
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.
Thursday, August 28, 2008
WINNIPEG - Ibrahim (Obby) Khan, a grown man of 27 who has played professional football for five years, can't describe the sheer joy he experienced last winter, when he dug into his first cheese pizza. Or when he dove into a bowl of Doritos.
"It was simply awesome," the Winnipeg offensive-lineman said this week. "Now I eat them all the time - four or five days a week."
Ah, the staples of a healthy diet.
But Khan can be excused for his indulgences. There was a time last year when his diet consisted of boiled rice and salmon exclusively. He couldn't eat fried, fatty or spicy food, chocolate, sweets or anything with seasoning. He couldn't eat fruits or vegetables. He had to take 50 pills daily and had nearly as many trips to the bathroom. There was a time he received daily morphine injections, directly into his heart, to ease the stomach pain he felt 24/7. He saw his weight fluctuate nearly 100 pounds.
"It's tough to explain," he said. "Take the worst aches, cramps and gas. Magnify it by 10 and then amplify that 24/7."
Khan was diagnosed with Chron's disease five years ago. The autoimmune condition can affect any part of the gastrointestinal tract, from the mouth to anus. Its main symptoms are pain, diarrhea, constipation, vomiting and weight loss or gain.
Khan continued playing through it - he broke into the CFL with Ottawa in 2004 before joining the Blue Bombers two years later in a dispersal draft after the Renegades folded - for more than three years, taking medication that kept the disease in remission.
But things began to change last season, forcing the 6-foot-3 centre to miss 10 regular-season games, along with the Bombers' post-season run to the Grey Cup final. He took medicinal steroids, anti-inflammatory and anti-diarrhea pills. There was a pill to curb his nausea. He tried yoga, chiropractic treatments, even acupuncture. He underwent chemotherapy for six weeks after developing a virus he caught from taking all the medication. He was taking eight Percozets daily for back pain before advancing to morphine. This once healthy 300 pounder was now a shadow of himself, weighing about 205.
"I had serious cramping and bleeding,"he explained. "And the urges to go to the bathroom - there were two or three months I couldn't leave my apartment. There was a time I almost slept in the bathroom."
He has a 13- or 14-inch scar - it took 40 stitches to close the wound - he proudly displays, like a badge of honour, from the surgery he underwent to remove his large intestine, and another smaller incision from the removal of the colostomy bag. Khan said he endured three weeks of hell following the surgery.
"My whole body - I couldn't sit up. It was tough walking, coughing and breathing," he explained. "Even taking a deep breath hurt."
Jacksonville quarterback David Garrard had a foot removed from his large intestine. But Khan is the first pro athlete to have it entirely expunged and return to his career - ahead of schedule, we might add. He started practising in June and returned two weeks ago, against Calgary. It marked Khan's first game since the regular-season finale in 2007. He received a standing ovation from the crowd at Canad Inns Stadium when he was introduced, although he didn't start. He now weighs about 290 pounds.
"He's coming along, and his health's about 100 per cent," Winnipeg head coach Doug Berry said. "He's got to improve his game. We'll keep working him in, but he's not ready to play an entire game at centre. I just don't know if he'd last in this heat.
"He's a good athlete. He's tough and a motivational leader. We want him back."
Khan's diet must remain regulated, and there are still many things he can,t eat, including some fruits and vegetables. He hasn't enjoyed a salad in two years.
"I've learned I can get through anything," he said. "If you have heart, support, determination and desire, you can do anything. I've been through hell. Whatever else can happen, bring it on. I can take on anything."
Friday, August 22, 2008
So about the athletes:
Tairia Flowers is representing the United States at the Olympics for the second time in her career this summer in Beijing, where she will play first base and catcher for the gold medal favorites. Flowers, who married a former UCLA basketball player, was limited in Athens by a Crohn's disease.
Carrie Johnson recently placed fifth in the 2007 World Championships of Kayaking. She was also the first U.S. kayaker to qualify for the 2008 Olympics in Beijing. Carrie Johnson also makes no secret about the fact she lives with Crohn's disease.
Carrie's Crohn's symptoms began while she was training for the Athens Olympic Games in 2004. While she was training for the Games, Carrie began suffering from extreme fatigue, severe weight loss and anemia. Carrie is a proud advocate for people living with Crohn's disease. She is actively involved in the CrohnsAndMe website (CrohnsAndMe.com), a site dedicated to people whose lives are affected by Crohn's disease. The website contains useful links to Crohn's disease resources, a tracking feature to help keep records of Crohn's symptoms, and information about the treatment available for Crohn's disease. Johnson, a native of California, is now 24 years old, and will compete in Beijing in a 26 pound single kayak.
Tuesday, August 19, 2008
Thursday, August 7, 2008
I am trying very hard to minimize stress. Add a tough economy, divorce, no AC in the house and plenty of work related issues and it is a tough mix. I got some peace based on a legal decision last week that has helped reduce my stress level immesaurably. Thank god. Sorry these posts aren't very exciting but I know alot of you are anxious to know how these treatment works. I do recommend that if you have moderate to severe chron's, that you talk to your doctor about Osiris' Prochymal Clinical Research Study to see if it can help you out.
Monday, August 4, 2008
Wednesday, July 30, 2008
Many of the readers of this Crohn's Blog have asked me how they can participate.
For more info, please send an email, including the nearest major city, to IBD@Osiris.com. We will contact you about participating sites in your area.
Phase II Results:
Prochymal Crohn's Disease Phase II Clinical Trial DataThis Phase II trial has completed enrollment.The objective of this study was to establish the safety and efficacy of two doses of Prochymal one week apart in patients experiencing moderate-to-severe Crohn’s disease that is refractory to steroids and immune suppression.
Ten patients were enrolled in the trial. Male and female patients were eligible and must have been between the ages of 18 and 70. Patients must have had moderate-to-severe Crohn’s disease that was refractory to steroids and immune suppression.
- Patients in the trial received two doses of Prochymal within 7 days. All patients had moderate to severe Crohn’s disease and were not responding to standard medications (steroids, immunosuppressants, and biologics).
- Every patient evaluated in the trial had a statistically significant reduction in disease severity by day 28, with relatively low doses of Prochymal and a short treatment course.
Improvement was rapid with a reduction in disease severity on day 7.
- There appeared to be a positive correlation between dose and response: Those patients receiving more Prochymal had a better outcome.
- The treatment was well tolerated with no severe adverse events attributed to Prochymal.
Friday, July 25, 2008
Wednesday, July 23, 2008
- You have a whole shelf in your pantry dedicated to your meds
- You can tell what part of your GI tract is off kilter today by the sounds..
- when you tell the phlebotomist, "trust me, thats not a good vein. no, you don't want to poke there either..."your grandparents ask you what they can expect when they go in for their first colonoscopy
- you can clench your buttcheeks so hard you are sure if you put coal in there you could make a diamond
- Your not a med student but your bookcase is 75% medical texts.
- Every skin rash triggers an emotional crisis!
- If You have larger clothes for bloated days..
- Your family comes to you for medical advice.
- You desperately wish Ensure came in more than 3 or 4 flavors..
- you stock up on clear liquids for flares or tests
- You look like you're 6 months pregnant by bedtime.
- When your cats feel sorry for you and cuddle up close to comfort you.
- You would never say I have a "stomach ache," but are more likely to say "my right lower quadrant is hurting," or "my inflamed ileum is giving me trouble!"
- You know the ER staff and all your doc's offices people by first name without having to look
- you are the only person you know that actually wants to eat salad but can'tyou have ever heard" i had the flu last week so I know what you are going through"Scrubbing Bubbles go on strike.The Tidy Bowl man leaves a "Dear John" letter.
- you see your undigested lunch bits in the toilet less than an hour after you ate it.
- you have a heating pad next to your bed for those painful nights.your husband looks at your *** and doesn't get turned on.
- You've fantasized about having a time machine for the express purpose of hunting down whoever developed Prednisone.
- you can run, unzip, unbutton, untie, and unbuckle all at the same time
- Mike Rowe refused to clean your toilet for the "Dirty Jobs" showyou feel faint when someones says," Oh Crap"….
- you take handfuls of pills at a time,you can swallow 15 pills in one swig of wateryou pay Doctor bills on a monthly basis
- you know the location of every bathroom in you local target, walmart, supermarket, etc
- You've ever "accidentally" let out a silent-but-deadly just to hurry the meeting along or for revenge on the guy who always says "just one more thing" when everyone else is ready to go.
- Your family and friends have fitted body armor and battle plans for those times they have to go Prednisone DEFCON 1 again.