Crohn's Disease Relief

Mention on Wall Street Journal Forums

My article yesterday discussing the Wall Street Journal story entitled "The FDA is Killing Crohn's Patients" was referred to on the WSJ forums here.  Here is a link to my post - Wall Street Journal Reports: The FDA is Killing Crohn's Patients.

A Mr Martin Heilweil said:

This situation/ complaint is discussed with some brevity and clarity at
http://www.crohnsdiseaserelief.com/

Thanks, Martin!  I feel like a kid that got a star on their school paper - proud and happy.  I write three blogs, but I have to say that this one is special to me.  Unlike my personal blog, Marianne's Motifs, I don't just rattle on about some cute thing my kids did.  And my Sci Fi Jungle blog is really just for fun.  But CrohnsDiseaseRelief I take very seriously.  I feel like its my own opportunity to do something good for people. 

I am pretty sure I went through about 25 years with undiagnosed Crohn's disease. I don't blame anyone - my symptoms were not traditional so I am not sure how it would have been found.  It wasn't found until I became sick enough to go in the hospital.  Anyway, I can't help but wonder if in the future we could a. figure out the real cause or triggers of Crohn's so people could avoid getting it, b. find a cure or really effective treatment, and c. find ways to better diagnose the disease, and its related IBD flavors. 

Getting a proper diagnosis was a real treat for me.  It is amazing what a difference there is being understood by doctors to have an actual honest to goodness disease instead of a crummy third rate  syndrome like Cronic Fatigue Syndrome which was the previous diagnosis.   Yeah that is a little bit of bitterness coming through.  Sorry - it slipped out.   

Flat Belly Diet, Sassy Water, and Crohn's

New Years Day brings thoughts of resolutions, diets, exercise, and generally all sorts of good intentions to get our lives in order.  This year the "hot" fad diet is is the Flat Belly Diet.  According to WebMD this is basically a variation of a Mediterranean diet with the addition of a 4 day jump start designed to reduce water weight.  The book is written by Liz Vaccariello who is an editor at Prevention Magazine, and nutritionist Cynthia Sass.  It is designed to take off a few inches or more off from the waistline.

The 4 day jump start hinges upon a concoction called Sassy Water.  Apparently Sassy water is water flavored with ginger, cucumber, lemon juice, and spearmint leaves.  It sounds pretty tasty to me, and some of these ingredients have a diuretic effect so I suppose it might help you lose a few pounds of water weight and help you jump start a diet.

Here is an example of the water recipe and a typical breakfast on the Flat Belly diet.

Sassy Water
2 liters water (about 8 1/2 cups)
1 teaspoon freshly grated ginger
1 medium cucumber. peeled and thinly sliced
1 medium lemon thinly sliced
12 small spearmint leaves

Combine ingredients and let it stand in fridge overnight. Drink all water the next day

Breakfast:one cup unsweetened corn flakes, one cup skim milk, 1/4 cup sunflower seeds (which take forever to chew), and 2 tablespoons raisins. Smoothie:1 cup skim milk, 1 cup frozen fruit (blueberries, peaches, pineapple, etc.) Blend for one minute; then add 1 TB of flaxseed oil.

Now comes the real question - How does the Flat Belly Diet rate for someone with Crohn's?  Well... the water sounds good, and provided the lemon juice or ginger doesn't give you an upset stomach it should be ok.  Raisins have a lot of iron, which many Crohie's are short on due to malabsorbtion of nutrients.  However, raisins are also pretty fibrous so if you were flaring they might not be good.  Blueberries as well have those little seeds that are sometimes not recommended for people with IBD if they are on a low residue diet. 

The flaxseed oil is a healthy choice, but I have heard that it can cause the big D so be aware.

If the Flat Belly Diet is in fact like a Mediterranean diet it is probably basically sound for a person with Chrohn's.  You would have to watch the very fibery veggies and whole grains to make sure they do not disagree with you.  Also, of course with someone with Crohn's it's more important than ever to check with your doctor before you start any new diet plan. 

Wall Street Journal Reports: The FDA is Killing Crohn's Patients

In a shocking article, Crohn's patient accuses the FDA of killing him.  Gideon J. Sofer is a Crohn's sufferer who has taken part in the Osiris Therapeutics Phase II trials of their new adult stem cell therapy Prochymal.  Because Osiris has stated that all of the patients that received the actual drug in the trials reported positive results, Mr, Sofer understands that he must have received the placebo. He has been in and out of the hospital and his disease is progressing.  His doctors have asked Osiris to give them information on whether he received the real drug or the placebo in the double blind tests, but they will not tell them.

Gideon Sofer wants the real drug, but even though it is on Fast Track for approval by the FDA, it might be years before it is available.  Read this quote for the most shocking part of the issue:

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.

I am of two minds on this issue.  One the one hand, I do understand the value of Double-Blind scientific testing of new medications.  Otherwise we will not properly know if the product really works.  Also, they need to study the long term effects of the drug.  Only look at the new black box warnings on Humira and Remicade to understand that what seems like a miracle drug can sometimes have unintended longer term side effects that need to be studied as well as the immdiate results.

On the other hand, if it is within the scientific protocols to allow a patient who received the placebo in a trial to receive the actual medication after the trial period is over, why will Osiris not allow this to occur in this case.  In a case where the disease can lead to a huge reduction in quality of life, extreme pain, and even the possibility of death, can't they bend?

I am personally really looking forward to see the long term effects of Prochymal.  I beleive that stem cell therapies are a beacon on hope for myself and others with a wide range of diseases.  However, I am also a bit concerned about long term effects and would like to know that a product is safe.  I am avoiding taking Humira, although it is the planned next step in my treatment plan, because of two reasons.  One, I want to save the "big guns" of biologic treatments as long as possible so as not to run out of options.  Two, I am afraid of the possible increased cancer risk that may be associated with the biologic treatments.

Although my "mild" Crohn's causes me pain, fatigue, and has hospitalized me, it is not threatening my life at this time.  In fact, Crohn's is not generally considered to be a killer disease, which may be part of why Osiris doesn't want to bend their study rules and provide the medication to their placebo subjects.  However, Crohn's can cause death, usually in terms of complications from surgery. 

I really feel for Gideon Sofer's plight, and I hope that Osiris changes it's mind.  I realize that they have a potential multi-million dollar market for Prochymal and they want the trials to be scientifically sound.  But please, people at Osiris/Genzyme - reconsider and help your study subjects. 

And two other requests: to the FDA I plead that you are able to properly balance the need for testing and study with the need for fast tracking drugs that have the potential to save lives for people that simply cannot wait.  And to the President, please create funding opportunities to allow all appropriate uses for stem cells to save lives.   G.W. Bush and his opposition of stem cell reaseach are about to be out the door.  Please let's have a government environment that allows scientific research to thrive.  We need it!

Anal Fissures hit the Ophrah Show

Oprah has a way of finding interesting topics and bringing them to light.  Recently she did a show on embarrassing problems that people have a hard time sharing with their doctors. As a Crohn's patient, I sure have had those!  When I first went into the hospital (later to be diagnosed with Crohn's) I had a yeast type infection of the groin area.  That was not fun to have to show the doctor.  I guess my immune system was so depleted by the Crohn's inflammation, that the yeast infection took over.

Back to Oprah, one of the problems she and her favorite guest, Dr. Oz covered was anal fissures.  Since this is a common Crohn's symptom I was glad to see it get some national coverage.

I found a very thorough and informative article about anal fissures on UpToDate.com and was very impressed by how they pretty much tell you all you need to know. 

I bet my mom might be mad at me for writing that she had a fissure that she had treated with a botox injection.  We were joking at the time that she had the youngest looking butt anywhere! And if they had some extra they could take out a couple wrinkles on her face while they were at it.

Living With Crohn's Disease

If you have just been diagnosed with Crohn's or even if have had it a long time, you probably have a lot of questions.  There are many books on the subject (see the Amazon.com ferris wheel below for some great books) but I think the best way to learn about living with Crohn’s Disease is to join a support group or web forum.  My favorite web forum is the Crohn's Forum at Healing well.  But there are many others out there too.  Many people like to find a support group in their area.  I personally think a web forum is great especially when you don’t have a lot of extra time and energy to run around town.

Plus my guess is that newly diagnosed Crohnies are probably really sick when they get their diagnosis and that makes it hard to get to a support group.  So the online support groups and great because you can check in for a short period of time each day when you are feeling good enough to be at the computer, and you don’t even have to get out of your pajamas.

Some of the best techniques I have for managing Crohn's pain have come from reading what helps other people.  For example, have you tried putting a heating pad on your abdomen?  It helps me when I get the aching or stabbing abdominal pain.  I knew a heating pad could help a sore back, etc. but I had not thought of it for abdominal pain.

Let's Help Julie raise $3600 for the Crohn's and Colitis Foundation

One of the best parts about writing the Crohn's Disease Relief blog is that I have received emails from people in the community.  Today I am writing about a woman who is running a half marathon all for Fundraining for Crohn's Disease.

Julie Nemecek is training to run the ING Miami Half Maratho.  In conjunction with Team Challenge she has a fundraising goal of $3600 all of which will go to the Crohn's and Colitis Foundation of America.  (The people working tirelessly to rid the world of IBD)

Go Julie!  Good luck with the fundraising and the running.  If everyone reading this blog gave $25 thing of how fast Julie would exceed her goal.

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Here is an excerpt from Julie's email to me:

Hi:

I was hoping you might be able to offer some publicity on your blog for a fund-raiser I'm conducting for the Crohn's and Colitis Foundation of America. I'm running a half marathon in January with the Team Challenge program with a final goal of raising $3600 for the CCFA.

My husband, as well as my stepmother and other members of both my and my husband's family have Crohn's. So, this is a very personal cause for me. Otherwise, there is no way I'd be running 13.1 miles. I had never run more than a half-hour straight in my entire life before beginning this.


This is my fundraising page for the ING Miami Half Marathon for Crohn's and Colitis Research
http://www.active.com/donate/MI09dcvirginia/JNemecek33

And this is one of my blogs, in case you're wondering if there is a real person behind this request:
http://jcnemecek.com/grosvenor

Thank you so much,
Julie

Top 10 Anti-Inflammatory Foods

Since Crohn's is a disease of inflammation of the digestive system, I am intrigued by the idea that there may be certain foods that may help keep reduce inflammation.  While I don't think there is any magic diet to cure Crohn's, we all can stand to make healthier food choices and consider adding as many healthy foods to our diets as possible.  Sometimes the low residue diet can be bland, boring, and frankly too high in carbs to stay on forever.

Some of my strategies for adding more fruits and vegetables to my diet are to cook my veggies more thoroughly to help break down any hard to digest fiber.  I try to limit the seedy fruits, and peel off the chewy skins.  Speaking of chewing, I am sure that really making a conscious effort to chew food all the way up may help the rest of the digestive system get a bit of a head start.

I found this great article on dlife.com that lists the Top 10 anti-inflammatory foods.  Most of them are on my good list, too.

1.  Salmon.  (I personally recommend to try to find wild salmon as well - super yum)

2.  Grass fed beef as opposed to grain fed beef.  According to the artcle grass fed beef has more Omega-3s that grain fed.  It may require longer cooking, or try the ground beef variety.  I am thinking meatloaf for the cold weather.

3.  Oil oil.  I cook with this pretty much all the time anyway.  Great taste and mono-unsaturated.

4.  Salads made with dark leaved greens.  This one may be hard for some Crohnies so we might want to modify it.  I personally like to eat collard greens cooked the southern way.  Since they are chopped and cooked for a long time they do not seem to bother my tummy.  I bet the ham in there is not real healthy though.  Darn it.  You could also do greens cooked into an Italian soup like minestrone, light on the beans if they bother you.

5.   Cruciferous vegetables such as broccoli, cauliflower, Brussels sprouts, and kale.  Well folks, this is one healthy choice that most Crohnies have a problem with.  I personally find I can eat broccoli, but the last time I had Brussels Sprouts I really regretted it.  I love them but they made me really crampy and gassy the next day.  Scratch those off my list.  For broccoli I just make sure to realy steam the heck out of it.

6. Cherries.  This one might be hard for people as well.  My gastro said to watch out for berries with seeds and skins.  To tell you the truth, I am allergic to cherries anyway.  One really good way to try to add these types of berries to a diet where you are concerned about too many seeds and skins might be to whiz them up into a smoothie.

7.  Blueberries.  I love 'em. but again due to the little seeds in them I try to limit it and just eat a handful.

8.  Turmeric.  I wrote an entire post about turmeric for Crohn's before as it is promoted to have anti-inflammatory properties and also has a mild taste.  It's great mixed in with Basmati rice aling with some butter and frozen peas and carrots for an Indian rice side dish.

9.  Ginger.  Yummy stuff.  My mother in law who is Korean swears by ginger tea for an upset stomach.  It makes mine worse!  But I do love it cooked in foods such as stir fry.  You could do a soy ginger salmon dish and get two of these anti-inflammatory foods in one.

10. Garlic - cannot cook without it!  Add some of this to the aforementioned salmon in soy ginger and there you go.

11.  Green tea.  I really love green tea.  I find it very relaxing, thirst quenching, and it is the one type of tea I do not feel inclined to add sugar to.  (Yes, I admit to a bit of a sugar addiction)

Well, the article that promised 10 Anti-Inflammatory foods delivered 11, so I guess it was a good deal.  Buy 10 get one free.

I hope this is informative.  I am always struggling to find just the right diet that I feel is healthy, but is also digestable and doesn't make me pay for it later.  I think its a bit of trial and error.

Free Appointment Calendar from Remicade

The makers of Remicade (Centocor) are offering a free appointment calendar for Crohn's patients.  There is a short survery before you get the freebie.

If you are taking medication for Crohn's but still experiencing symptoms (including abdominal pain, cramping, and diarrhea), your Crohn's may not be as under control as it could be. Talk to your doctor to find out if treatment with REMICADE is right for you.

To receive your free appointment calendar, complete the information below and click "Next."

Veterinary college develops vaccine for Johne's disease

In medical news this week I read that scientists at Cornell Veterinary college have developed a vaccine for Johne's disease.  Johne's disease is an animal disease that effects cattle, and other animals and has similar symptoms to Crohn's disease in people.

Here is a quote from Yung-Fu Chang, Cornell professor of microbiology and the paper's principal investigator, via physorg.com.

"Equally important, though, this organism has been suspected to be one of several possible contributing agents to Crohn's disease that has similar pathologic lesions in people. The results of our research may offer useful information to those working with Crohn's disease."

One of the frequently cited "conspiracy theories" about Crohn's disease is that there is a connection between the bacteria shown to be the cause of Johne's disease in cattle and Crohn's disease in humans.  This link has not been proven in scientific tests, but their remains speculation that there may be some link in the diseases.  It may be that the Mycobacterium avium subspecies paratuberculosis bacteria (MAP) that causes Johne's disease in cattle and other animals is a trigger factor for Crohn's disease in humans. MAP bacteria is not killed by the current methods of pasteurization of cow's milk.

I am intrigued by the idea that if there is a vaccine for the bateria for use in cattle, if that means there might be some further study that  could be done for a similar vaccine for humans.  There are already certain genes that have been identified in people that seem to show a highter pre-dispsition to the Crohn's.  I wonder if people that are shown to have these gene's could get a vaccine against MAP bacteria.

Prochymal Stem Cell therapy predicted $235 million market by 2017

Prochymal, made from adult stem cells, is currently in phase III clinical trials for treatment of Crohn's disease. According to a company press release there has been some very promising results from the completed phase II trials.

Decision Resources has written a special report entitled Cellular Therapies focusing on the cellular therapies drug market in the next 10 years.  By cellular therapies they mean new stem cell treatments and other types of cell based treatments for diseases such as graft vs. host disease, Crohn's disease, and prostate cancer.

In the report they predict that by 2017 the Osiris/Genzyme's product Prochymal will have a $235 million market.  Here is a quote from the press release on The Earth Times.

Another cellular therapy that will launch in the near-term, Osiris/Genzyme's Prochymal, will garner sales of $235 million in 2017 for the treatment of Crohn's disease, although its initial regulatory approval will be for graft-versus-host disease in 2010 in the United States and in 2011 in Europe.

I checked out the Osiris Therapeutics web site and found a company press release describing some promising results reported from the completed Phase II trials of Prochymal.

Trial Highlights

-- With relatively low doses and a short treatment course, every patient evaluated had a reduction in disease severity by day 28.

-- In patients who failed available drugs for Crohn's Disease, there was a statistically significant reduction in the mean CDAI score of 105 points by day 28.

-- Improvement was rapid with an average CDAI reduction of 62 points by day 7.

-- There appeared to be a positive correlation between dose and response, with patients receiving

the high dose achieving a greater response (average CDAI reduction of 137 vs. 65).

-- The treatment was well tolerated and there were no severe adverse events attributed to PROCHYMAL.

Of course all of us with Crohn's disease are watching very closely to see the results and possible risks) of these new treatments. Since Remicade and Humira seem to have a possibility of increasing the risk of cancer for patients, and also both have a possibility of of patient developing a sensitivity to the drug, I would like to know that there is another choice available for people who have exhausted other treatments.