New David Garrard Crohn's Interview

From Bob Sansevere of TwinCities.com
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.

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.

I have Crohn's, Should I Get a Flu Shot?

This is a question that I had to ask myself this morning. Prior to researching this issue, my suspicion was that anyone taking Remicade, Imuran or immunosuppresive Crohn's drugs should avoid. Theory being that if your immune system is weakened do you really want to be injected with the flu virus. Partially correct it seems. The flu shot contains a strain that is not a live flu virus, but most doctors seem to be recommending you wit one week after your infustion. See below, but the answer seems to be yes, you can get a flu shot if you have Crohn's.

People with inflammatory bowel disease (IBD) who are taking immunosuppressive drugs fall into a high risk group. Some immunosuppressive drugs include:
Azathioprine (Imuran)
Cyclosporine (Neoral, Sandimmune)
Mercaptopurine (Purinethol, 6-MP)
Methotrexate
Prednisone

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.

Osiris Prochymal Stem Cell Transplant Update and XBP1 Info

So I have to think that I got more than a placebo. While on the high level I am more relaxed, happy and content than I though possible, I am also under a lot of day-to-day stress and pressure. As almost anyone with Crohn's Disease will tell you, there is a near concrete link between stress and Crohn's Disease flare ups. With my recent stress levels, I am pretty confident that pre-Osiris Prochymal I would be in a flare up. The good news is that I am not. The pain has subsided quite a bit and I am generally feeling really great as it relates to Crohn's. My improvements were enough to qualify me for phase II and as soon as I enter a flare-up, I am ready for 4 more treatments. I am more living with Crohn's now than I am suffering from it, and that is a big step in the right direction! Anyways, to you guys that are in Crones flare-ups or have been recently diagnosed....keep your heads up...and let me know if you have any questions. Be sure to use the search feature on this blog as we have covered alot of topics over the years.

-Scottie

PS - Intersing info here exploring the genetic link to Crohn's

A team of scientists have discovered that the XBP1 gene is a risk factor for developing Crohn’s disease and ulcerative colitis, forms of inflammatory bowel disease (IBD).

The investigators created a mouse model in which they deleted XBP1within the epithelium. They found that the mice spontaneously developed an intestinal inflammation that resembled IBD. The lack of the XBP1 gene disabled the normal communication between intestinal epithelial cells and gut bacteria, resulting in dysfunctional immune response and disease, the researchers explain.

The researchers then reportedly demonstrated that alterations in this gene in the intestinal-lining cells represent risk factors for development of Crohn's and colitis. The study was conducted by scientists from Brigham and Women's Hospital, Harvard Medical School, and institutes in Germany, The Netherlands, and Austria. Results appear in the September 5 issue of Cell.

Phenoemnal Article on Autoimmune Disease and Crohn's

Excerpted from The Autoimmune Epidemic: Bodies Gone Haywire in a World Out of Balance--and the Cutting-Edge Science that Promises Hope (Touchstone/Simon & Schuster). To read the entire article, check here.

Most of us, at some juncture in our lives, have played out in our minds how devastating it would be to have our doctor hand down a cancer diagnosis or to warn us that we are at risk for a heart attack or stroke. Magazine articles, television dramas, and news headlines all bring such images home.

But consider an equally devastating health crisis scenario, one that you rarely hear spoken about openly, one that receives almost no media attention.
Imagine the slow, creeping escalation of seemingly amorphous symptoms: a tingling in the arms and fingers, the sudden appearance of a speckled rash across the face, the strange muscle weakness in the legs when climbing stairs, the fiery joints that emerge out of nowhere -- any and all of which can signal the onset of a wide range of life-altering and often debilitating autoimmune diseases.

Imagine, if you can: the tingling foot and ankle that turns out to be the beginning of the slow paralysis of multiple sclerosis. Four hundred thousand patients. Excruciating joint pain and inflammation, skin rashes, and never-ending flu-like symptoms that lead to the diagnosis of lupus. One and a half million more. Relentless bouts of vertigo -- the hallmark of Ménière's. Seven out of every one thousand Americans. Severe abdominal pain, bleeding rectal fissures, uncontrollable diarrhea, and chronic intestinal inflammation that define Crohn's disease and inflammatory bowel disease. More than 1 million Americans.

More than 2 million patients. Dry mouth so persistent eight glasses of water a day won't soothe the parched throat and tongue and the mysterious swallowing difficulties that are the first signs of Sjögren's. Four million Americans. And, with almost every autoimmune disease, intolerable, life-altering bouts of exhaustion. If fatigue were a sound made manifest by the 23.5 million people with autoimmune disease in America, the roar across this country would be more deafening than that of the return of the seventeen-year locusts.

And yet, despite the prevalence of autoimmune disease, surveys show that more than 90 percent of people cannot summon the name of a single autoimmune disease when asked to name one specifically.

Think of it -- other than walkathons for multiple sclerosis, how many fundraising walks or lapel ribbons have you seen for autoimmune disease in general? Nearly 24 million Americans are suffering from an autoimmune illness, yet nine out of ten Americans cannot name a single one of these diseases. It boggles the mind.

Each of these nearly 100 autoimmune diseases derails lives. Taken collectively, these diseases, which also include type 1 diabetes, Graves' disease, vasculitis, myasthenia gravis, connective tissue diseases, autoimmune Addison's disease, vitiligo, rheumatoid arthritis, hemolytic anemia, celiac disease, and scleroderma are now the Number Two cause of chronic illness in America and the third leading cause of Social Security disability behind heart disease and cancer. (Acquired immune deficiency syndrome, or AIDS, by contrast, is not an autoimmune disease; in fact, it is entirely different. In AIDS a virus attacks the immune system and destroys it, whereas in autoimmune disease, the immune system leads the attack, mistaking the body's tissue for an invader and turning on the body itself.)

Autoimmune diseases are the eighth leading cause of death among women, shortening the average patient's lifespan by fifteen years. Not surprisingly, the economic burden is staggering: autoimmune diseases represent a yearly health-care burden of more than $120 billion, compared to the yearly health-care burden of $70 billion for direct medical costs for cancer.
To underscore these numbers, consider: while 2.2 million women are living with breast cancer and 7.2 million women have coronary disease, an estimated 9.8 million women are afflicted with one of the seven more common autoimmune diseases: lupus, scleroderma, rheumatoid arthritis, multiple sclerosis, inflammatory bowel disease, Chron's Disease, Sjögren's, and type 1 diabetes. All of these can lead to potentially fatal complications.

Or slice these statistics another way: while one in 69 women below the age of fifty will be diagnosed with breast cancer, according to estimates, as many as one in nine women of childbearing years will be diagnosed with an autoimmune illness, which strike three times as many women as men -- and most often strike patients in their prime. According to the National Institutes of Health, autoimmune disease affects far more patients than the 9 million Americans who have cancer and the 16 million with coronary disease.

Stem Cell Transplant or Surgery? Meet with Dr. Shafran Tomorrow

to find out...I ran into Ira and Anita on the street today at a St. Patty's Day Parade in Winter Park (a bit early I know). Anyways after reading up on the whole stem cell and Crohn's thing I am nervous as hell for this appointment. However with nothing really working medication wise (Pentasa/6MP, Asacol, Remicade, Humira, etc), I am down to either letting it go until a major flare up, Surgery or this whole Stem Cell Transplant. I will post after I meet with Dr. Shafran and his staff.

Basic Facts on Humira

For people with Crohn's disease, Humira may be effective if Remicade no longer helps, new research shows.

"We are very encouraged by the findings of this study and look forward to larger prospective studies," says researcher Konstantinos A. Papadakis, MD, with the Inflammatory Bowel Disease Center at Cedars-Sinai Medical Center in Los Angeles, in a news release. His paper appears in the current issue of American Journal of Gastroenterology.

Crohn's disease Crohn's disease is a serious chronic and inflammatory disease of the intestinal tract, causing diarrhea, cramping, stomach pain, weight loss, and in some cases rectal bleeding. These symptoms wax and wane, with periods of active inflammation and disease followed by periods of inactivity. There is no cure for Crohn's disease, but Remicade has helped to greatly reduce symptoms of this lifelong disease.

Remicade, a drug that works by blocking a part of the immune system know as TNF, is currently the only FDA-approved "biologic" treatment of this kind for the treatment of Crohn's disease. The drug lessens the symptom flare-ups and helps keep people in remission for long periods of time. It also helps people avoid developing fistulasfistulas, a common complication in people with Crohn's disease. Fistulas are openings of the intestine into other organs or on to the skin, such as around the anus -- which can seriously affect quality of life, and often requires surgery.

Crohn's Disease vs. Humira
In his study, Papadakis tested Humira, a similar drug that suppresses the immune system and is FDA-approved for treatment of rheumatoid arthritis.
His study involved 13 patients with Crohn's disease. All had been taking Remicade, but were no longer getting any relief from it. In the six-month study, they got an initial 80-milligram injection of Humira, then 40-milligram injections every two weeks. Researchers tracked their symptom relief.

Of the 13 patients, seven had complete symptom relief, four had partial relief, and two got no relief. Six of the patients required a boost in their dosage to maintain symptom relief.
Almost three quarters of the patients (73%) were able to discontinue or significantly decrease their concurrent dose of steroids.

All patients tolerated Humira without any allergic reactions; two patients had a skin reaction at the injection site.
Overall, the study shows that Humira is a strong option for Crohn's disease patients -- when Remicade no longer works, writes Papadakis.

Remicade's side effects include:
A rare but deadly liver reaction
Serious, even fatal, infections like tuberculosis
Increased risk of certain types of cancer like lymphoma
Increased risk of an autoimmune disorder such as a lupus-like syndrome
Humira's side effects include:
Serious, even fatal, infections like tuberculosis
Increased risk of certain types of cancer, like lymphoma
Increased risk of an autoimmune disorder such as a lupus-like syndrome

Tysabari Approved for Crohn's Disease

Tysabri Approved for Crohn's Disease

TUESDAY, Jan. 15 (HealthDay News) --

Tysabri (natalizumab) has been approved by the U.S. Food and Drug Administration to treat moderate-to-severe Crohn's disease in people who haven't responded to other therapies.
Tysabri, made by the Ireland-based drugmaker Elan and Massachusetts-based Biogen Idec, was approved in 2006 to treat relapsing multiple sclerosis.

The drug has a boxed warning of increased risk of progressive multifocal leukoencephalopathy (PML), a viral infection affecting the brain that could cause severe disability or death, the FDA said in a statement. Anaphylactic reactions and liver injury also have been reported in some users.

Crohn's patients prescribed the drug will be enrolled in a restricted distribution program called Crohn's Disease-Tysabri Outreach Unified Commitment to Health (CD-TOUCH). Under the program, physicians must evaluate Crohn's patients using Tysabri after three months and should discontinue use of the drug if there is no improvement, the FDA said.

Crohn's is an incurable bowel disease with symptoms that may include diarrhea, fever, rectal bleeding, malnutrition, narrowing of the intestines, cramping, and abdominal pain. The disease, affecting more than 1 million people worldwide, can also lead to abnormal connections called fistulas from the intestines to the skin or internal organs.

More about Tysarbi:

Elan Corp., Ireland's biggest drugmaker, and partner Biogen Idec Inc. won U.S. approval for the use of their multiple sclerosis medicine Tysabri as a treatment for Crohn's disease.
The Food and Drug Administration issued its determination in an e-mailed statement today. Elan and Biogen said in a separate statement that they expect Tysabri to be available to Crohn's patients by the end of February, once an FDA-approved plan to minimize risks of the drug is in place.

The companies are trying to expand the use of the medicine, which brought in $93 million in the third quarter. Tysabri is taken by about 21,000 MS patients under prescribing restrictions because of a risk of rare, fatal brain infections. Similar rules will be used in treating Crohn's disease, a chronic inflammation of the intestines that affects about 1 million people worldwide.
The approval is ``an important step in the armamentarium for treatment but one that carries extreme risks,'' said Joyce Korvick, deputy director of the FDA's office of new gastroenterology drugs, on a conference call with reporters.

Other therapies for Crohn's include Abbott Laboratories' anti-inflammatory medicine Humira, which exceeded $3 billion in global sales for the first time in 2007, Abbott Chief Financial Officer Thomas Freyman said on Jan. 7.

Dublin-based Elan discovered Tysabri, and is developing the medicine as a Crohn's treatment. Its partner Biogen, based in Cambridge, Massachusetts, lost more than $5 billion in market value in December after announcing it failed to find a buyer and planned to remain independent.
Biogen rose 90 cents, or 1.5 percent, to $59.92 at 4 p.m. New York time in Nasdaq Stock Market composite trading. Elan's American depositary receipts, each equal to one ordinary share, rose 10 cents, or less than one percent, to $24.86.

Pulled From Market
Tysabri was the best hope in a decade for MS patients when it was approved in November 2004. It was pulled from the market three months later because of links to a neurological disorder called progressive multifocal leukoencephalopathy, or PML. Three patients contracted the disease, and two died.

About 14,000 patients have been treated with Tysabri since it was returned to the market as a multiple sclerosis drug in July 2006. No cases of PML have been reported. An advisory panel to the FDA voted 12-3 last July to recommend approval of the added use for Tysabri for Crohn's disease, with restrictions to reduce the risk of infection.

In October, the FDA extended its review. A month later, European regulators rejected an appeal by Elan and Biogen of an earlier decision that the product not be approved and marketed for Crohn's.

The Brits Announce Bacteria in Cows Milk Likely Cause of Crohn's Disease

Scientists at the University of Liverpool, United Kingdom, have discovered a certain type of bacteria in cattle as a likely cause for Crohn's disease in human beings. The bacteria, called Mycobacterium paratuberculosis, are known to cause the debilitating Johne's disease in cattle. It is believed the bacteria are transferred from cows to humans via milk and dairy product consumption. The British scientists have been able to observe reactions caused by the bacteria in the human body that could tap it as a cause for Crohn's disease. This could open up new ways for finding more effective treatment options for Crohn's.
Crohn's disease is a chronic inflammation of the intestines. Patients suffering from Crohn's disease experience pain, bleeding, and diarrhea. If medical treatment options are not successful, relieve can often only be found through the removal of the effected part of the intestines. Similarly, Johne's disease in cattle causes severe diarrhea. As a result of the disease cattle usually slowly perishes. While the cause of Johne's disease has been known, until now there had been no known cause for Crohn's disease. It has been most recently theorized that Crohn's (not Chrones, chrons, or chron's) disease is genetically linked. The British Scientists now seem to be able to explain how the presence of Mycobacterium paratuberculosis in a patient's body can cause Crohn's disease.
It has long been known that patients suffering from Crohn's disease have a higher than usual level of E.coli bacteria in their body. Similarly, Mycobacterium paratuberculosis has been known to be present in Crohn's disease tissue. But until now, nobody has been able to explain the bacteria's presence and connection to the disease. Now the British scientists have been able to observe that the bacteria, Mycobacterium paratuberculosis, inhibit the body's immune system response to E.coli bacteria.
Mycobacterium paratuberculosis discharges a mannose-containing molecule. Mannose is a type of sugar. This molecule stops macrophages, a type of white blood cells, from destroying E.coli bacteria in the patient's body. The increased level of E.coli bacteria weakens the immune systems response to other intestinal bacteria, including Mycobacterium paratuberculosis.
The scientists also determined that the bacteria could cause an increase in a circulating antibody protein (ASCA). Two-thirds of Crohn's disease patients have this type of protein indicating a likely infection with Mycobacterium paratuberculosis.
Clinical trials are planned to seek out treatment options through an antibiotic combination, which is aimed at eliminating Mycobacterium paratuberculosis in a Crohn's disease patient's body. If the scientists' assumption is correct, the disease should subside with the elimination of the bacteria.

Crohn's Disease and Stress - Exploring the Link Between Crohn's and Stress

Although stress doesn't cause Crohn's disease, it can make your signs and symptoms much worse and may trigger flare-ups. Stressful events can range from minor annoyances to a move, job loss or the death of a loved one. Every flare-up and even my initial diagnosis can be directly related to stress. Almost every Chron's Disease patient I talk to or hear about supports a simple fact. There is a link between Crohn's and Stress.

It is basic science (and common sense). When you're stressed, your normal digestive process changes. Your stomach empties more slowly and secretes more acids. Stress can also speed or slow the passage of intestinal contents. It may also cause changes in intestinal tissue itself. For someone with Crohn's this stress often leads to falre ups

Although it's not always possible to avoid stress, you can learn ways to help manage it. Some of these include:

Exercise. Even mild exercise can help reduce stress, relieve depression and normalize bowel function. Talk to your doctor about an exercise plan that's right for you.
Biofeedback. This stress-reduction technique helps you reduce muscle tension and slow your heart rate with the help of a feedback machine. You're then taught how to produce these changes yourself. The goal is to help you enter a relaxed state so that you can cope more easily with stress. Biofeedback is usually taught in hospitals and medical centers. For me....soccer, running and lifting weights all reduce my stress. They also give me incentive to eat better. Less stress and better diet = Healthier Living = Crohn's Flare Up Control. If you are having a flare up, I feel that these things can also bring you out of it.

Regular relaxation and breathing exercises. An effective way to cope with stress from Crohn's disease is to regularly relax and exercise. You can take classes in yoga and meditation or practice at home using books or tapes.

You can also practice progressive relaxation exercises. These help relax the muscles in your body, one by one. Start by tightening the muscles in your feet, then concentrate on slowly letting all the tension go. Next, tighten and relax your calves. Continue until muscles in your body, including those in your eyes and scalp, are completely relaxed.

Deep breathing also can help you relax. Most adults breathe from their chests. But you become calmer when you breathe from your diaphragm — the muscle that separates your chest from your abdomen. When you inhale, allow your belly to expand with air; when you exhale, your abdomen naturally contracts. Deep breathing can also help relax your abdominal muscles, which may lead to more normal bowel activity.

Hypnosis. Hypnosis may reduce abdominal pain and bloating. A trained professional teaches you how to enter a relaxed state and then guides you as you imagine your intestinal muscles becoming smooth and calm.
Other techniques. Set aside at least 20 minutes a day for any activity you find relaxing — listening to music, reading, playing computer games or just soaking in a warm bath.

Bottom Line: Whatever you can do to reduce stress in your life will have a positive impact on your Crohn's.

Take care, be healthy and live a better life.

Smoking and Crohns Disease

Hey Guys - I found some interesting new info on Smoking and Crohn's Disease. Alot of people ask me about the realtionship between smoking and Crohn's, so here you go ( from April 2007):

A new study in The American Journal of Gastroenterology suggests that smoking may determine which part of the intestinal tract is attacked in those who suffer from Crohn’s disease. Where the disease is located often determines whether the patient will eventually require surgical treatment.

“In patients who smoke, Crohn’s disease tends to appear more frequently in the small intestine, rather than the colon,” says study author Dr. Marian Aldhous. “Our data shows that when Crohn’s disease is located here, it tends to cause more penetrating or obstructive damage, which would have to be treated by surgery.”

The results of this study raise interesting questions about why smoking would affect different parts of the intestine in different ways.

“Fundamental differences in small and large bowel physiology may explain the differences in location of Crohn’s disease in smokers,” says Aldhous. “The effects of smoking should be further investigated, to understand why smoking has a differential effect on different parts of the bowel.”

Personally my worries skew more towards the link between alcohol and Crohn's!

Smoking and Crohns Disease

Hey Guys - I found some interesting new info on Smoking and Crohn's Disease. Alot of people ask me about the realtionship between smoking and Crohn's, so here you go ( from April 2007):

A new study in The American Journal of Gastroenterology suggests that smoking may determine which part of the intestinal tract is attacked in those who suffer from Crohn’s disease. Where the disease is located often determines whether the patient will eventually require surgical treatment.

“In patients who smoke, Crohn’s disease tends to appear more frequently in the small intestine, rather than the colon,” says study author Dr. Marian Aldhous. “Our data shows that when Crohn’s disease is located here, it tends to cause more penetrating or obstructive damage, which would have to be treated by surgery.”

The results of this study raise interesting questions about why smoking would affect different parts of the intestine in different ways.

“Fundamental differences in small and large bowel physiology may explain the differences in location of Crohn’s disease in smokers,” says Aldhous. “The effects of smoking should be further investigated, to understand why smoking has a differential effect on different parts of the bowel.”

Personally my worries skew more towards the link between alcohol and Crohn's!

Happy Thangsgiving to All you Chronies!

Tuesday was rough for me. B12 shot, blood drawn, Humira. Probably nothing compared to what some of you are going throuigh and what I have been through in the past.

Happy Thanksgiving to you all. Hope the Turkey treated you guys well and you could all eat at least some mashed potatoes. I felt well, ate twice and had a few beers with the family. Just a quick post. more later.
-Scott

Tips for Dealing with a Crohn's Disease Flare Up - Crohn's Disease Blog

Below are some good tips for dealing with Crohn's Disease Flare ups...mine is last. Please feel free to add your own tips or talk about how YOU deal with a Crohn's disease flare-up.

From Aaron: The greatest advice I have for those with Crohn's or Colitis is to keep your chin up and stay positive. Believe it or not, attitude can play a major role in coping with IBD. Although I was formally diagnosed with Crone's disease this morning (after a colonoscopy), I have experienced many symptoms for nearly two years. While fighting through the physical pain has been extremely difficult at times, I constantly remind myself that I won't let the disease hold me back. Like many other sufferers, I am only 18 years old. And I have no intention of simply giving in and sulking in self-pity. So next time IBD gets you down, try to keep a positive frame of mind. Remember that you have your whole life ahead, and you won't let IBD stop you from making the most of it!!! Any questions, reactions, etc?

From Kimberly: This may sound strange, but it works! Read a book on pain management during labor and child birth. The breathing techniques and focusing method discussed are a great method! When the flare up starts I start doing the breathing and distraction just like I was having a contraction.

Heat1 says: I try to visualize myself in my favorite place. A little island in Florida. I imagine myself there and have fun. It helps but try to be in a quiet area or it can be more stressful and that is NOT what you need!! Hope this helps you!!

Beau says: I find that cuddling with my dog is one of the great ways to be happy, but if my dog is not available or if I just don't want to for some reason I follow my other passion, studying War history. I know it might sound lame but I can get so lost in it that I never realize what's going on. So my best advice would be to find a passion, and pursue it when your sick.

Elease says: When my aunt, who has had Chron's for about 30 years has a bad day, she reads or draws to stay quiet and take her mind off it...or she will call a friend from church or a family member and have a chat about non-Crohn's stuff to help her relax.

Amy says: Whenever I get a flare up the first thing I do is lay down and relax for a while...sometimes the stress is just to much for me. If that doesn't workthen I cut out the foods that might be a problem, and stick to liquids and bland foods. I haven't had any real bad flare ups since i really first got it and that was 2 years ago though. But I find just relaxing and taking my mind off of it usually does the trick.

Tyler says: When I have a flare-up I like to play my guitar, I find it takes my mind off of the pain.

Susan says: I recommend writing in a diary. It feels good to get the thoughts down on paper and get them out of your body.

Randy says: One way I get over the flare ups of Crohn's is hunching over my knees. This really lessens the pains. I know its happened to me many times.

Scott says (me) - I generally go on a liquid diet to ease the workload on my bowels. I think getting plenty of rest is key (but I don't). I lay on the floor on my back...seems to help..maybe it just gets the pressure and tension off of my gut. I also have a prescription to percocet which not only helps with the pain (it's the only thing that truly works for me) but tends to constipate normal people....and slows down diahreah (I still don't know how to spell that word) for me.

Crohn's Disease in NYC

Ahh, So I returned to the scene of my now infamous pants pooping site today. Unfortunately my favorite boxers weren't there (Click here if you have no idea what I am talking about). I was in New York City for ad:tech. My stomach was OK, but I am a bit worried about a blockage. I get my Humira shot in a few minutes. Thanks for all of your comments. I am teetering on the edge and somehow avoiding a flare up. I am determined to run a marathon in 2008 and am about to start training again. My goal is 8 miles by Jan 1 (at a 7:50/mile pace).

Stress has a Tremendous Impact on Crohn's

Stressin out over work, home life and money. I am a mess right now. Subsequently my Crohn's Disease is starting to Flare. It was a real bad day. Hopefully things turn around for me. Sorry for the short and lame post. The latest Humira shot hurt a bit. I am generallya VERY happy person...but latley I find my seslf slipping into what can only be described as depression.

Lupus and Crohn's Disease

Lupus and Crohn's Don't Need to Ruin Your Life
By Candida Bohnne-Eittreim

It's been a long journey of discovery in how to live with both lupus and Crohn's Disease. Both of these are autoimmune disorders that wreak havoc with the body's connective tissues, and in some cases cause death. Because these are incurable and little understood disorders, it has taken major proactiveness on my part in learning how best to cope with the almost constant pain and fatigue they carry with them.

I was first diagnosed with Crohn's Disease in the early '70's. I had been losing weight steadily, and was wracked with severe abdominal pains. My doctor had told me most likely I was suffering from "housewives" syndrome, which he blithely claimed was common among high strung women such as myself. That changed dramatically, when one night bent double with pain, I found I was hemorrhaging badly from my rectum. Admitted to the hospital from the emergency room, I was told I had cancer of the colon, and scheduled for surgery. When I awoke, I was told I had Crohn's Disease, and that it would require lifelong treatment. They had to remove a large piece of colon that was completely blocked by the thickening so common in Crohn's.

The next few years were a nightmare of tests, surgeries and medications more toxic in some cases, than the disease itself. I had started researching everything I could find about this disease, and was horrified to learn that there wasn't much that could be done. There was this enormous well of rage and a good dose of self pity in me during those early years. Rage that the supposedly best medical system in the world couldn't do better, or even answer how or why a person got an autoimmune disorder.

Crohn's Disease involves the digestive tract, from the esophagus to the small bowel. It causes pain, fever, and diarrhea. It can also affect the joints and the eyes, leading to blindness. When it attacks the colon and bowel, it thickens the walls with inflamed tissue, which if left unchecked, can lead to intestinal blockages, which are life threatening. The mechanism for it is the same for all of the autoimmune disorders-the body turns on itself.

In a normal system, if a person experiences a wound or an illness, the T cells and white cells react as antigens which attack the diseased or damaged area, then shut themselves off. In autoimmune disorders, there is a failure to turn off this immune response, resulting in damage that continues, unless through medications it is modified. Most of the drugs used are geared toward damping the response down to healthier levels. Imuran, cyclosporin, Plaquenil, azothioprine and prednisone are often used. All of them have unpleasant side effects, much like those experienced in chemotherapy.

After multiple surgeries, and a rash of severe reactions, I made a decision not to use toxins to treat this disease. Most importantly, I refused to let myself be defined by it. I am much more than the sum of this disease, and refused to give in to it.

About the time I had finally adjusted to living with Crohn's, I began feeling very ill in an odd way. My throat hurt so bad I couldn't eat nor could I swallow anything but ice water. I developed a pain in my right ribs so severe I couldn't walk for a week. The fatigue hit me so badly, I called it "crash and burn". Once it started, I had to lie down, where I'd fall into such a deep sleep, I heard nothing. After 3 weeks of this, I went to my internist, who ran tests, including an ANA (anti-nuclear antigen). When he called me in the following week, he was in tears, and told me I had SLE (systemic lupus erythematosis). I sat there numb, hardly believing I had not one, but two of these strange disorders.

Still struggling, along with my husband to come to terms with this latest happy bit of news, I immediately began researching everything known about SLE. I discovered it's not uncommon for patients with certain autoimmune disorders to have more than one. And in that case it is considered a mixed blessing. The thinking being having mixed connective tissue disorder is often less lethal than having just one. HA! The only blessing I saw was for the pharmaceutical companies that love to do clinical trials on us.

After long talks with my family and others who cope with these disorders, I made a momentous decision. No more cytotoxins or other drugs, save for those that eased the symptoms of daily living. No more fighting with the disease, but a day to day journey of learning to live with it, without impacting everyone around me. This was no easy decision, for SLE attacks the heart, the kidneys, the skin and sometimes the brain. But for me and my family it has turned out to be the right decision.

I started using alternative medicine, including herbal supplements that cause much less side effects, and in most cases have brought me greater relief. I use Co Q- 10 for cardiac support, along with carnitine. Hawthorn for the intermittent claudication of fingers and toes, and an excellent multivitamin daily.

Along with a diet rich in anti-oxidents and exercising to keep joints supple, I bring an attitude of refusing to behave as if I am severely ill with anything.

When I have bad days, instead of fighting it, I relax and try and find things to make life easier. Writing is one of them. Some of my best work has come out of my worst days of pain. Good days are a celebration. They are a little gift of freedom from my old friend-pain. I've learned to live for today, knowing tomorrow isn't promised. To bring the gift of laughter and love to those around me every day-good or bad. Each day I awaken thanking God for the blessing of another day, and every night I thank Him for the gift of these diseases. For through them, my children and others have come to realize that we are only limited by ourselves. Most of all that we have choices when it comes to dealing with the difficult things in life. We can give in to them and die, or we can soldier on and live a life filled with small miracles.