Corporations and Crohn's: Want Some Prometheus with your Swiss Miss?

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As I mentioned in a previous post, I recently had a blood test to check my Imuran levels.  The blood test is one of several offered by Prometheus Therapeutics and Diagnostics.  In fact, they specialize in tests related to Crohn's, IBS and other digestive diseases. The test needed to be conducted before 11 am because the sample needed to be sent to San Diego for testing.

I was curious about this test and wanted to find out more. And what I discovered only reaffirmed my feelings about global, multi-national corporations and their quest for profits above all else.

Imuran is a registered trademark of Prometheus. And Prometheus is owned by Nestlé.  

Yes, the same Nestlé that makes Swiss Miss, Perrier water, Oreos, Smarties, DiGiorno's pizza, Hot Pockets, Lean Cuisine, Gerber baby food, Purina dog and cat food, to name just a few. Although only 6% of their revenue comes from pharmaceutical products, it seems fitting that they develop tests for digestive problems that may, in part, be caused by their food products (if you go by the theory that Crohn's is caused by environmental factors, that is). 

The diagnostic test they offer are rather extensive:  

• Prometheus IBD sgi Diagnostic
• Prometheus Crohn's Prognostic
• Prometheus Celiac Serology
• Prometheus Celiac Genetics
• Prometheus TPMT Genetics
• Prometheus TPMT Enzyme
• Prometheus Thiopurine Metabolites
• Prometheus LactoType
• Prometheus Serum Infliximab/HACA Measurement

These tests range in price from $150 to over $800 a test. The accuracy of the prognostic tests have been challenged.  

But there have been other chalenges as well. Prometheus sued Mayo Collaborative Services (a for-profit division of the Mayo Clinic) for patent infringement and the case went all the way to the Supreme Court. Apparently, Prometheus tried to patent the following diagnostic process:

1.  Deliver medicine
2.  Test the levels of medicine in the patient's blood
3.  Decide to raise or lower the dose based on known thresholds of the drug

I'm not a scientist, but I learned about this process in grade school.  It's called the "scientific method." Mayo Collaborative Services had been using Prometheus' services but then announced in 2004 that they would develop their own diagnostic test.  Prometheus sued for patent infringement and the case languished in court for over seven years.  In the case, pharmaceutical companies and drug manufacturers, of course, had sided with Prometheus. The case was decided on March 20, 2012 and the majority sided with Mayo Collaborative Services. The Supreme Court "concluded that Prometheus' process for monitoring a patient, and adjusting dosage as needed, was not patent-eligible."⁽¹⁾

What does this mean for the average Crohn's patient?  Probably not much.  One would think that competition within the diagnostic industry would keep the costs low.  But that is not the case as hospitals add their own fees and service charges to the tests anyway.  One person on a Cohn's forum complained that a basic diagnostic test cost her over $1000, even though the charge from Prometheus was $270; the hospital had added $980.

This has only reinforced my opinion that the modern pharmaceutical industry is in no way interested in curing diseases.  They want to maintain diseases so that they can maintain or increase profits.  Caught in the middle are doctors who, generally, want what's best for their patients.  They want to see an end to Crohn's.  

But that would put some very big companies out of business.

And, as instances of autoimmune diseases are on the rise, this is a major cash cow for corporations like Nestlé.  There is no incentive to find cures anymore.  And the legal wrangling over patents and medicines only slow down the process for cures.  Jonas Salk never patented his discovery of the polio vaccine in the 1950s but instead gave away the information for free so that others could make the vaccine and eradicate polio.  According to Forbes, he missed out on what could have been a $7 billion windfall.  Plus, patenting a medicine tends to raise the cost by about 25%.

Could he have done that today?

I have my doubts.


<sup>----

(1)</sup> Diane Bartz and James Vicini, "Top court rules against two diagnostic patents."  Reuters.  March 20, 2012. (http://www.reuters.com/article/2012/03/20/us-mayo-prometheus-patent-idUSBRE82J0NV20120320)

Is it the IMURAN or ME?

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It's been six weeks now on Imuran.  I just took one of those Prometheus^* tests the other day to test my levels.  The blood is collected and then sent on a plane to San Diego, the only testing facility in the United States for this kind of test.  I wonder how much that costs?  Thankfully, I've good insurance.  I can't imagine what it must be like to have Crohn's and lacking insurance.

I am feeling pretty good, all things considered.  I haven't gotten sick yet on Imuran (knock on wood).  Imuran is a powerful immunosuppressant and sickness is quite common while on the drug.  Infections can be dangerous. Luckily, I don't have any plane travel for the next few months.

Two things, though, have changed in the last few weeks.  Is this from the Imuran?  Is it me?  Or a combination of the two?

1). Extreme fatigue.  This is a common side effect of Imuran.  When I say fatigue, I don't mean that I feel a little tired.  This is a "gotta-close-my-eyes-or-fall-down" tired. And it hits really fast.  The other day I was driving home from work and found myself nodding off.  I actually fell asleep at a light. I realized that I could not drive and pulled over into a parking lot of a closed store and slept for a half hour. Coffee doesn't help.  It usually hits in the mid to late afternoon. Hard. Been taking more naps lately.

Now, I know I can probably counter this a bit by getting my metabolism up through exercise.  My plan this break is to start taking long walks or jogs on the treadmill.  Hopefully, that will help.  Plus, as my body adjusts to the Imuran this is something that could go away.  Or get worse.  One thing is for sure:  this holiday break has not made it easy as I have been indulging in all of the holiday sweets around the house.  That alone can put one into a food coma; the Imuran just speeds it along.

2) Food Aversion.  This is the weird one.  I used to love pasta.  All kinds of pasta: pasta with marinara, pasta with pesto, angel hair, ziti, penne....you name it.  Loved pasta.  Until a few weeks ago, that is.  It was about a month ago and the smell of some simmering marinara hit me as I walked in from work.  Nothing beats that smell of tomatoes and basil.  At least, that's how I used to feel.  This time, the smell was not pleasurable.  And, I had a hard time chewing the pasta.  And swallowing the pasta.  The taste and texture was hard to overcome.

The other day, Cheryl made ravioli with a pesto sauce.  Again, something that I used to love.  This time...couldn't eat it at all.  It smelled good.  I think it probably tasted good as well.  But I couldn't get through but a couple of bites.

On the other hand, I had some lasagna about a week ago and no problems there.  The only difference was that the sauce contained meat...but essentially, it was pasta.  But not the reaction I had to just plain pasta and sauce.  Very strange.  I am curious if this is common with other Imuran users.

Anyone taking Imuran have any similar experiences?  Or different?   Share below.


^*Prometheus is a proprietary testing service, owned, incidentally, by Nestle.  Yes, the same multi-national corporation that makes Swiss Miss instant cocoa.  They just recently won a lawsuit against the Mayo Clinic for patent infringement.  They currently have a monopoly on this technology related to diagnostic testing of Crohn's and other digestive diseases.  More on this later.

The Life Insurance Questionnaire

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So tonight I had to answer some medical questions over the phone to some poor sap probably not making much more than minimum wage. From the way she read the questions, I could tell she was relatively knew at this. The questionnaire was for a new life insurance policy my wife and I are applying for. I had to answer questions about doctors, medical history and diagnoses.  I knew this was going to get interesting when the first question was about medication.

Luckily, this is coming now and not at the time a few months ago when my pill intake was over 40 pills a day.

So I rattled off my list:  Imuran, 100 mg.  Prednisone, 10 mg.  Flagyl, 250 mg three times a day.  Prevacid, 30 mg.

She then asked me the diagnosis that the medicine is treating.

"Crohn's," I replied.

"When were you diagnosed with Crohn's disease?"

"In 2000."

"What symptoms did you have to prompt that diagnosis?"

"I had some pain," I replied.

"Just pain?  Anything else?"

I paused.  I wasn't sure just how much information I was to give.  How detailed should I be?  Did I need to tell her about mucous poops?  Or the times the toilet bowel looked like something from one of those Saw movies?  I decided to go easy on her.  "And frequent elimination," I added.

"Frequent elimination?"  She was quiet for a moment, as if looking for something on a computer screen.  "Did you say elimination?"

"Yeah."  It was silent on the other end.  I could hear the keys tapping.  She was trying to find the box to check off on the form, undoubtedly.

I decided to help her out.  "I shit a lot," I explained.

"Oh," she said with surprise.  I heard some keys tapping and imagined with a slight chuckle a box on a computer screen somewhere in a dark room with the phrase "shits a lot" suddenly checked off.

Then she asked about diagnostic tests.  Oh, boy.  Where to start?  I listed off colonoscopies.  One in 2010.  2008.  And every two years before that.  Sigmoidoscopy in 2012.  Endoscopy in 2012. Exploratory surgery in 2012.  A CT scan in 2012 for a suspected fistula.  That was negative, I quickly added.  Three CT scans in 2010.  Stress test in 2010.  Another one in 2012.

"What were the stress tests for?" she asked.

"Costochondritis," I replied.

She paused, looking for a list on her screen.  "Can you spell that?"

I did and then explained that it is inflammation of the cartilage in the rib cage.  Back in May of 2010, I experienced severe chest pain and was brought to the hospital in an ambulance (I didn't mention that part.)   The CT scans revealed nothing abnormal.  And it was decided that the inflammation was probably related to the general inflammation I had as a result of Crohn's.  Nothing wrong with my heart, I assured her.

"What was the stress test for in 2012 then?" she asked.

"Oh, that.  I was experiencing pain and palpitations."

"Costo...whatever it was?"

"No.  It was the result of the large dose of prednisone that I was on at the time.  And the stress, most likely, during a particularly bad flare up."

"How often do you experience flare-ups?"  she asked.

I paused and thought about it. And the truth was, I really wasn't sure. The worst flare up I had was a year ago. I missed a couple of weeks of work as the Crohn's moved to my lower colon. That was when they had to go in and look at the inflammation and ulceration in the lower colon. I haven't had a severe flare since, but I have been on numerous medications since then, including a whole regimen Chinese herbs and ointments that I have since stopped.

I rarely get flares in the summer.  Probably because I am off from school.

I flare up in the Fall, usually. The Spring. The severity varies. Sometimes food can be a trigger, of course, but I didn't want to go into that whole history.

"About once a year," I said.

After answering some more questions about doctors and family history, the interview ended.  Now some stranger who I will never, ever meet knows a hell of a lot about me.  More than most people, actually.  And all of that data about tests, doctors, medicine and symptoms are now part of another large database.  My personal experience will soon be categorized and quantified; my weight, height and medication transformed into numbers that will be added to spreadsheets and risk assessments.  Everything I am will be reduced to a formula and that formula will determine how much I will have to spend on life insurance so that my family can be secure in case something happens to me in the near future.  Or if medical bills need to be paid.

How much risk is a Crohn's patient worth?  That is what someone, somewhere sitting in a cubicle staring at those numbers will determine.

Generally, I am pretty healthy.  Except for the Crohn's, of course.  But that doesn't matter to a number cruncher.  Life insurance companies are in the business to make money, plain and simple.  My experience---rattled off through a phone interview and a physical examination next week---will be reduced to a single number that represents my worth to someone who really has never met me.

But they have met Crohn's.

And to them, that is all that matters.

An Open Letter to the Illinois General Assembly RE: Medical Marijuana

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Dear Representatives to the Illinois General Assembly:

My name is Bruce Janu.  I am 44 years old, married to a wonderful woman and the father of two young boys, ages 8 and 6.  I teach high school history in suburban Chicago.

I don't use drugs of the illicit kind.  My drugs are completely legal but potentially very dangerous.

You see, I have Crohn's disease, which is an autoimmune disease that attacks my digestive system, causing bleeding ulcerations in various sections of my colon.  It is a painful and sometimes debilitating condition.  Last year, I missed a couple of weeks of work as a result of my condition.  In addition, I have had numerous procedures and have experimented with a multitude of drugs.

Currently, I am taking 10 mg of prednisone daily.  I have been on prednisone everyday for over a year now.  My dose has been as high as 40 mg a day.  Prednisone is a steroid that not only lowers the body's ability to fight infection, continued use causes bone loss, cardiovascular problems and cataracts.

In addition, I am taking 750 mg of Flagyl each day.  Flagyl is an antibiotic that has some anti-inflammatory properties.  It also can cause numbness and tingling in extremities and increases the risk of seizures.

And, last, but not least, I am taking 1000 mg of Imuran a day.  This is a drug used to inhibit organ rejection in transplant patients and is also used to treat autoimmune diseases, such as Crohn's.  It is a severe immune system inhibitor.  Use of Imuran increases my chances of getting lymphoma and leukemia.  In addition, fungal infections and a certain type of fatal white-blood cell cancer known as T-Cell Lymphoma is more prevalent for Crohn's patients being treated with this drug. 

Pain is a constant reality in my life.  I am so used to it, I imagine my tolerance has grown very high over the years.  But, even so, I have heavy duty pain-killers at the ready.  Just in case.

I am not sure that medical marijuana would do anything for me.   That option, however, should be available when discussing treatment with my doctor.  More and more studies are showing that marijuana can be an effective treatment for people with Crohn's disease.

So much political rhetoric these days involves paying lip service to such amorphous terms as "freedom" and "liberty."  Where is the freedom--where is the liberty---for a person suffering from a debilitating disease when he or she cannot seek all medical options?  Should someone suffering from cancer be denied a basic treatment---a natural alternative to pharmaceuticals--simply because of a political agenda?

If my doctor were to recommend medical marijuana for my Crohn's, would it be moral and ethical to deny such treatment due to some outdated notions about cannabis?  After all, it would be highly regulated and the chance of it turning into a "gateway" to harder, illicit drugs is pure fantasy.  I am more likely to become addicted to the Vicodin in my cabinet than any amount of medical marijuana prescribed to me by a qualified doctor.

It is time to truly enter the 21st century.  Opening the door to medical marijuana will also promote more research into cures for diseases such as mine.  It will allow an alternative avenue to those seeking relief from symptoms without having to fear the side effects of the numerous, but far more dangerous, pharmaceutical options.

In this veto session of the General Assembly of Illinois, I urge you to vote yes on HB 30.  It is the right thing to do.  It is the ethical thing to do.

Thank you.

Sincerely,

Bruce Janu
Battling Crohn's since 2000

My Talking Colon

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My colon talks sometimes.

As anyone with Crohn's can tell you, a colon sometimes makes a lot of noise. It gurgles. It burps.  It sloshes. Sometimes it is soft. Sometimes it is loud and angry, causing spasms that resonate throughout the abdomen.

And usually it just doesn't care what you are doing or where you are.  Sometimes it wants to announce to the world that it is there. Such an attention seeker is a colon.

The other day I was at a meeting after work. A couple of dozen people were sitting around a table. We were discussing various issues and events facing the people in our line of work. My colon decided it wanted in on the discussion.

First it gurgled; a guttural sound that rises from deep within the bowels and tingles the skin. Everybody with Crohn's knows that sensation.

And when that happens, we tend to shift in our seats to try and mask the sound, hoping others did not hear the noise. Sometimes we cough lightly to cover up the noise. But none of that actually works; we know that, but do it anyway.

My colon decided that day that it was not going to be silenced.  It gurgled some more. It bubbled loudly. It was like that drunk relative at a family reunion still living in his parent's basement, wanting to prove to everybody that he's made something of his life.

People were beginning to notice my colon. They glanced my way. Eyebrows were raised.

I stopped trying to hide it and was instantly reminded of William S. Burroughs.

In his very bizarre novel, Naked Lunch, Burroughs writes about a man with a talking asshole:

Did I ever tell you about the man who taught his asshole to talk? His whole abdomen would move up and down, you dig, farting out the words. It was unlike anything I ever heard. This ass talk had sort of a gut frequency. It hit you right down there like you gotta go. You know when the old colon gives you the elbow and it feels sorta cold inside, and you know all you have to do is turn loose? Well this talking hit you right down there, a bubbly, thick stagnant sound, a sound you could smell. 

For the first time in my life, Burroughs actually made sense. My colon was talking. Like the asshole in Burroughs' story, my colon was giving me "the elbow" and trying to get recognized.

It wasn't too long before the guy sitting next to me turned and said, "Is that your stomach?"

I laughed. Everyone just assumes that when such a noise emanates from a body, it must be the stomach announcing that it is hungry. Which is funny because it is not quite the same sound as a hunger rumble.  And everyone knows it.

"No," I replied.  I actually wanted to say:  No, that's shit rushing through my innards.  But I didn't.

"It's my colon," I said in an exaggerated whisper.

"Oh," he replied, a little surprised and perhaps a tad bit embarrassed.   He looked back down to his computer.

"It talks sometimes," I added.

For the rest of the meeting, as we discussed the various issues facing people in my line of work, my colon occasionally added its own two cents. A gurgle here. A slurp there.

Shit rushing through my innards.

My colon talks sometimes.  And I could tell, on this occasion, it was really enjoying itself.

You Know You're a Crohnie when....

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Crohnies know things that others don't.  We think about things in different ways; we adapt to changing situations and always determine our course of action based on our bowels.  It's the way we work.

I was struck by this a couple of weeks ago when I was at the Bruce Springsteen concert at Wrigley Field.  During the middle of the show, I reached into my pocket and pulled out a little plastic bag with a single white pill.  While Springsteen was belting out "Born to Run," I was downing Flagyl.

That's what crohnies do.

So it got me thinking:  what else do we do that make us unique?  So I started to compile a list.  Please add on to the discussion.

You Know You're a Crohnie when....

...you always carry around an extra pair of underwear.

...you count the number of times you go to the bathroom a day.

...you pick restaurants based on the quality of the restrooms rather than the quality of the food.

...you know every potential side effect for every medication you have ever taken.

...you know exactly how much of a particular food item causes a flare.

...you unabashedly talk about your bowel movements in front of complete strangers.

...you carry a packet of wipes with you.

...you have your doctor's number on speed dial.

...you have no problem sticking your head in a toilet bowl to get a good look at your stools. 

...you are an expert on poop and understand the intricacies of odor, consistency and color.

...you don't freak out when you poop blood.

...you can name all the parts of your colon and can explain the digestive process to others.

...you know what your ileum is.

...a 5 poop day is a good day.

...you really, really like prednisone.

...you are afraid to pass gas for fear of passing much more than gas.

...you have a colonoscopy at least once a year.

...you are the go-to person to calm others when they face their first colonoscopy. 


More to come.   Add to this list via the comments below or trend it on Twitter (#urcrohnie)

Fistula, In-Grown Hair or Staph?

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This is the sore a couple of days after draining;
it is about the size of a dime.

As I mentioned earlier, I took Imuran for two weeks and then stopped due to some pain that had returned in my right side. Blood tests turned out okay, yet the pain was still there.

And then the sore appeared.  It was relatively small, located just underneath my navel.  I hadn't seen it before due to two things:  1) it was located right at my waistline and covered most of the time under the band of my undies and 2) the flab of my gut covered it.

I didn't think anything of it.  Probably an ingrown hair or something, I told myself.  By the time I noticed it, the pain was rather high, however, and it resembled a volcano that was about to blow.  So I did what any person would do in such a situation:  I drained it and cleaned it with alcohol and went on with my life.

When talking with my I doctor, I mentioned the sore and she became concerned.  Although I assured her that it was nothing but a topical skin infection, she said that it could also be a fistula.  These noxious ailments are often mistaken for ingrown hairs or boils.  They are small, but painful infections that tunnel through the walls of the colon, through soft tissue until they reach the outside.  Fistulas can happen anywhere and for someone like me, any such external infection located on the abdomen is cause for worry.

So she ordered a CT scan^* and I was convinced that I now had a fistula.  I looked up fistulas on the internet. I compared pictures of fistulas to the sore on my abdomen.  Self-diagnosis is something we crohnies always do--and almost always assume the worst.  It's not that we are negative about our ailment, just realistic and prone to being prepared for the worst.

I had my CT scan on Friday evening and by Sunday I had the results.  My doctor phoned me to explain that it was not a fistula, but that I did have moderate swelling in my lower colon. Other than that, everything looked okay.  Nothing on the CT scan could explain the sore.

The sore was troubling to her, however.  Imuran is an immunosuppressant and could leave the body open to various infections.  This is the reason why I had to go through additional tuberculosis testing before starting the drug.  Among other things, immunosuppressants have the tendency to awaken latent tuberculosis in the body.

This is the sore today.

I saw my general practitioner today in order to get a look at the sore.  It's still there, but very much smaller.  He too was concerned that, after draining and applying alcohol, it was still red and swollen.  So, he gave me an antibiotic particular to skin infections.  And he told me that if it comes to a head, not to drain it.  I need to come back in so that he can take a culture and determine what type of infection it is.  Staph, he said, is something that has been coming back with a vengeance.

My GI wants to continue with the Imuran.  I am up for that, but have to wait until this sore is gone.  I have a week on this new antibiotic and then we will go from there.  What is strange, however, and most likely the reason for such caution, is that I have been on Flagyl for the last 9 months.

Flagyl is an antibiotic.

So, whatever it was that gave me that little, yet painful pustule, was strong enough to evade the Flagyl.

This new antibiotic is called Keflex.  Amazingly, it is not one that I have every had before.

Let's see if it works.

--------------

^* You know you're a crohnie when a skin infection requires a CT scan

Exaggerated Sense of Well-Being

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I took Imuran for two weeks.  About a week and a half into the treatment, I started getting pain in my gut once again.  Subtle pain; nothing extreme.  Certainly bearable, considering the pain that I have felt before.  The pain sometimes was centered near my belly-button---most of the time on the right side, sometimes on my left.  Most of the time, the pain was on my right side, about half-way up my abdomen.

My doctor thought I might be having a reaction to the Imuran.  So I was told to stop taking it and head over to the lab for some bloodwork.  A liver profile was in order.

Well, it turns out my liver is okay.  Nothing is abnormal according to the bloodwork.  But the pain is still there.

My doctor prescribed me dicyclomine for the pain.  This is an anticholinergic used mainly to treat IBS.  It helps sooth intestinal muscles and stop spasms.  I have the generic; the brand name is Bentyl.

So I took one, even though the pain is not great.  But if it helps, so be it.

One thing that I always do when taking new medicine is to look at the possible side-effects.  I love those.  Soem are so outrageous that one wonders why take the drug in the first.  For legal reasons, drug companies have to ackowledge everything that came up during the trials---which is why there is that lovely commercial for the antidepressant Ablify that warns of "uncontrollable muscle movements that may become permanent."

Then there's Xenical, a weight loss drug with side effects that include "gas with oily discharge, increased bowel movements, an urgent need to have them, and an inability to control them."  Sounds a lot like Crohn's to me.
The side effects for dicyclomine are pretty typical:  dry mouth, drowsiness, blurred vision and nervousness.
But, under the "CONTACT YOUR DOCTOR IMMEDIATELY" header is the following:
"exaggerated sense of well-being."
I had to read that a couple of times:  "call your doctor immediately if you experience an exaggerated sense of well-being."
What does that even mean?  If I am feeling good---too good---I should call my doctor?  
What denotes an exaggerated sense of well-being?  Submitting my name and photo to a modeling agency?
Spend the day admiring my reflection in store windows?
Going on buying spree for new clothes so I can continue being "awesome?"
And if I have an exaggerated sense of well-being, why would I even think to call a doctor?  I have an exaggerated sense of well-being, after all; I don't need no stinkin' doctor!
I then noticed the fine print:  "this is not a complete list of side effects."  Okay, I'll bite.
I went online and discovered even more:  fainting, short-term memory loss, seeing things and hearing voices that do not exist, and inappropriate mood.
I think the Crohn's is enough.  That's one thing I have learned over the last decade:  sometimes the side-effects are worse than what is being treated.  
But, like everything else with this disease, drug effectiveness is all by trial and error.  When the cause of disease is unknown, then the treatment is pure experimentation.
It seems the medicines I have tried have fallen more in the "error" category than anything else.  Every time I try something different, my Crohn's either gets worse or something else pops up.
At least I don't have "oily discharge."
Not yet, anyway.


  

Another Medicine Come and Gone...for Now.

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Crohn's is a particularly stubborn disease.  In all of my years of having it, not much has worked to curb its symptoms.

For the last few months, I have been feeling pretty good.  And that is because of a regimen of Flagyl and Prednisone.  Plus, the summer is usually a good time for me.  Relatively stress-free, summer is the best medicine for my Crohn's.

When I start school again in the Fall, I usually experience some flare-up.  That is to be expected.  This year, however, was pretty good.

Until I started the Imuran.

Let's back up a bit, as it has been awhile since I posted.

Back in December and January, I experienced a new round of flares as my Crohn's moved to my lower digestive tract.  Not only was it excruciatingly painful, but also debilitating.  I had to take off work.  I had to spend my time sitting in a warm bathtub several times a day.

I experimented with herbs and acupuncture.  I gave up dairy.  Nothing seemed to help----except the Flagyl and Prednisone.

Flagyl is a powerful antibiotic taken three times a day.  And prednisone is a steroid.  Both of these drugs work, but are not good to be taken in the long-term.  Flagyl can cause nerve damage and prednisone---well, it may help relieve Crohn's but it does a number on bones, joints, muscle tissues and can cause cataracts.

I began to feel instantly better.  My GI recommend me to see a specialist at the University of Chicago.  So I made an appointment.  But I couldn't get in for at least 4 months and finally saw him in August.  After a long review of my history and charts, he told me that I needed to be on something stronger.  And, like my GI, recommended that I begin Imuran.

Imuran is a TNF blocker.  Crohn's is an autoimmune disease in which it is believed that the body's immune system attacks healthy tissue in the digestive system.  Imuran inhibits a particular protein called Tumor Necrosis Factor, thus decreasing the body's inflammatory response to Crohn's (it is also used for rheumatoid arthritis).

There has been a lot of success with Imuran and Crohn's; but there are some potentially dangerous side-effects to such drugs as well.  Believe me, I have read the list and it scared the hell out of me.  But, as the University of Chicago specialist told me, "Statistically, prednisone is more dangerous.  We know what prednisone is doing to your body right now and you cannot be on it for the long term."

So, two weeks ago, I started a daily regimen of Imuran.  50 mg.

I was still feeling good.  In fact, I started going to the bathroom less.  And, for the first time in years, felt constipated once.  Hhhmmm.  I forgot what that was like.

But then the pain came back.  In my right side.  Not excruciating, but subtle.  It came and went.  Some days it was in my lower abdomen, just right of my belly button.  Today, the pain is stronger and is now on my side, about halfway up my abdomen.  And I have some pain once again in my lower digestive tract.  Not much, in fact, barely there but enough for me to notice.

So, needless to say, my doctor told me to stop the Imuran for now.  She believes that I am probably having a reaction to that drug.  I went to the hospital yesterday for a blood test.  The blood test will tell how my body is processing the Imuran and if I should continue.

And then we'll go from there.

If I can't take Imuran, I am not sure what is next.  Humira?  That is a TNF blocker as well, but is made differently (Imuran is made with mouse DNA and Humira is made with human DNA).    Will that make a difference?  Don't know.

But so far, the scorecard isn't too good for the drugs that I have taken:

If only we could bottle and sell summer.  Then I think I would be cured.

More to come.

You Know You're a Crohnie When...

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...you need to pop pills at a Bruce Springsteen concert.

My Flagyl Experiment (with updates below)

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I have been taking Flagyl now for a couple of months straight.  Plus, 10 mg of Prednisone.  Feeling pretty good, I must say.  However, occasionally, I miss that cold beer or nice glass of wine.  There's warnings all over the Flagyl literature:  "Do not take with alcohol."  Apparently, the Flagyl interacts with the alcohol to create the same substance in your body that is sometimes used to treat severe alcoholism.  That is, it makes you violently ill when it comes into contact with alcohol.  Projectile vomiting may be the result of this concoction.

According to the literature:

Drinking even a small amount of alcohol (ethanol) while taking Flagyl can make a person very sick. Flagyl and alcohol together cause severe nausea and vomiting, flushing, fast heartbeat (tachycardia), and shortness of breath. The reaction has been described as being similar to the effects of Antabuse, a drug that treats alcoholism by causing patients to become very sick when they drink.

Now, I don't want to be violently ill, so I have avoided alcohol completely.  No beer.  No wine. Nothing.

However, I have been reading lately that the "no alcohol" thing may not be true.  At least in most people.  Several studies have been done and found no correlation between alcohol and Flagyl.

Recent clinical studies have failed to demonstrate a significant interaction between metronidazole and alcohol. Despite the lack of a demonstrated interaction, your healthcare provider and pharmacist will probably still warn you to avoid alcohol while taking this medicine.

So I have decided to try an experiment.  And it goes something like this:

1.  Glass
2.  Cold can of Guinness
3.  Pour Guinness into glass
4.  Drink
5.  Wait to get sick

Simple experiment.  And it could go either way.  Plus, my wife isn't here tonight to tell me that this isn't a good idea. I'll keep you posted.  Until then, here's to science!

UPDATE #1 (11 pm)

It's been about an hour.  I've been nursing the Guinness.  When I took the first sip, I had my doubts.  The last thing I wanted to do was to ruin my favorite beer forever.  I had a bad experience with tequila back in college and it took several years to get over that.  However, after about 12 ounces consumed---nothing.  No nausea.  No head aches.  No projectile vomiting.    

UPDATE #2 (12 am)

All 15 ounces of Guinness consumed about 50 minutes ago.   No reaction.  Just a little tired.  Going to bed. 

$746 in Herbs and All I Got Was This Bloody Colon

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A week after finishing up the Flagyl¹, my colon took a turn for the worse.  I started going more and then, about a week later, pain and blood.  Lots of blood.  In fact, it was like a Quentin Tarantino film in the toilet bowl.  Reservoir Bowels.

It wasn't a pretty sight.

So I called up my gastroenterologist and she put me back on the Flagyl.  Three days later, the blood stopped and the pain subsided.

Since then, I have grown very skeptical of Chinese medicine.  For a while, I was convinced that the reason I was feeling better was due to the herbs.  After all, I have consumed over 3000 herbal tablets since February and spent nearly $750.  Now I am not so sure.

At my last appointment, Dr. X told me that this usually happens. When you go off of western medicine, he explained, symptoms usually come back for a short period of time.  However, it felt like I was getting another infection.  The external Crohn's was obviously making a comeback and, much like "Hail to the Chief" announces the president's arrival, the blood and pain were a clear signal as to what was around the corner.  And it wasn't Obama.  I didn't want a repeat of the episode that landed me in surgery at the beginning of the year.

So, I am back on Flagyl and wondering what to do next.

I decided to do a little experiment.  Through muscle testing, I have been diagnosed by Dr. X of having reactions to dairy.  As a result, I have not had any dairy in my diet for almost four months.  I had muscle reactions to both milk and cheese products.  I explained the whole process in a previous post.

As part of my experiment, I brought to my appointment some mozzarella cheese, pesto and olive oil.  I cut the cheese into a rectangle and told Dr. X that it was tofu. I put it in my mouth and he pushed on my leg.  No reaction.  The problem here is that I had a reaction several weeks earlier to the same product.  The only difference is this time Dr. X didn't know the true identity of the food.

The biggest criticisms of muscle testing is that there is no scientific proof that it works.  Although most doctors are well-intentioned, some argue that the "reaction" to certain foods is merely the doctor doing something different in order to get that reaction.  Every food item that was dairy based was found to create a reaction in my body.  Except the cheese that he thought was tofu.  But I don't think he did anything different.  But, at the same time, I am not sure why my leg gave out one time and not the other.

I don't know what to think at this point.  Even the pesto didn't create a reaction, and that has cheese in it as well.

So is the Chinese medicine all a waste?  Or, perhaps since I have purged myself of dairy, my body no longer registers a little cheese as a threat?

I had to cancel my appointments for the last two weeks and haven't been on herbs for over a week and a half.  Since stopping the herbs, I have not noticed any difference  The only thing I am on at this moment is Flagyl, which I take three times a day.

Logic tells me it has been the Flagyl all along.

I will see my gastroenterologist in two weeks and she wants to start me on a more aggressive treatment:  a TNF inhibitor, such as Humira or Imuran.  I haven't decided if I am going to go back to my Chinese traditional medicine doctor or not.   And I am not sure I want to go the route of a TNF inhibitor.

Everything is up in the air.

I am feeling pretty good now.  I guess that is what counts.

Maybe I should try the wormwood² next.

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¹ Flagyl is a powerful antibiotic.  It is one of the oldest drugs to treat Crohn's and has been pretty effective in treating fistulas and anal/rectal Crohn's.  Although it was developed to treat stubborn bacteria, like c. difficile, it was discovered to have anti-inflammatory properties.  Some people stay on Flagyl for months or years.

² Wormwood is the bitter herb found in absinthe.  Some traditional doctors are using it in place of TNF inhibitors.  A couple of recent studies suggest it as an effective treatment for Crohn's.  Of course, none of these studies have been conducted in the United States, most likely because there is no money in using an herb to treat a disease such as Crohn's. After all, the TNF inhibitor market is a $13 billion a year industry.

The Ying and the Yang: Western v. Eastern Medicine

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Today, I finished my month-long supply of Flagyl.  This is an antibiotic used mostly to treat intestinal or vaginal infections.  Since I don't have a vagina, the drug was used to treat my colon.  But not for a bacterial infection, however.

My surgeon prescribed it for me when I was having issues with external inflammation and pain.  Here's the thing about Western doctors:  they don't like not-knowing why things happen the way they do.  I asked him why I was getting an antibiotic to treat inflammation.

"We have found that Flagyl helps with anal Crohn's inflammation," he said.  I think he was expecting it to end there.  Obviously, he doesn't know me very well.  I like to know why.

"Why is that?"  I asked.

He paused a moment, thinking of what to say.  "We don't know," he finally replied.  Western doctors don't like not knowing and I think they feel a little bit inadequate when forced to make that admission.  They feel like they should know.  After all, they spent a great deal of money becoming doctors and we expect them to have all the answers.  In the West, we spend a great deal of time trying to determine the causes of ailments.  And since there is no determined cause for Crohn's, a lot of it is trial and error.  And that doesn't sit well with most doctors.

Now, contrast this with my Traditional Chinese Medicine doctor.    A couple of months ago, Dr. X began prescribing for me various herbs to treat my Crohn's.  One of the herbs is honeysuckle.   Honeysuckle has been used in traditional medicine for thousands of years.  It is a natural anti-inflammatory.  I asked Dr. X what it was about honeysuckle and Crohn's.

His response:  "I don't know."   Okay.  Not too different from my Western doctor.  But he didn't stop there.

"And, to be honest with you Bruce, I don't care.  All I know is that it works."

I was a little surprised by his candor.  "These herbs have been used for thousands of years.  I don't know why they work. And it really doesn't matter, does it?"

"I guess not," I replied timidly.

Dr. Zhengang Guo

Dr. X studied herbs under Zhengang Guo, who grew up in China and learned herbal medicine from his father.  After studying Western medicine and oncology, he came to the United States in 1981.  A few years later, he began teaching a class in Traditional Chinese Medicine at the University of Illinois, the first class of its kind in the city.  One of his students:  my very own Dr. X.  

"I'm not an herbologist," he continued. "I am not even sure of all of the herbs in the various formulas I prescribe.  I'd have to look at the labels." 

Okay, this was a little bit too much candor for my taste.  It was one thing not to know why things happen the way they do, but to revel in it went against every academic fiber in my being.

"Look, you didn't come to me to find out why Crohn's happens. I have no idea," he said.  "You came to me to feel better.  And that's what Traditional Chinese Medicine focuses on:  not the cause, but but the symptoms.  I know what works.  Why it works?"  He then shrugged his shoulders.  "It really doesn't matter."

So there it is:  the ying and the yang.   The Western doctors forever searching for a cause; the Eastern doctors using the time-honored technique of "whatever works."

Still, I have one less pill in my system now.  Soon, I'll be done with the prednisone as well.  By next week the only medicine coursing through my veins will be Dr. X's herbs (plus the probiotics and vitamins I am taking). 

And then we will truly see if "whatever works" really has some truth to it. 

BSI: Bowel Scene Investigation

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The subject was a 43-year old male with Crohn's disease.  A "Crohnie," they call him.  After a particularly good week, he entered a favorite Mexican establishment by the name of Chipotle.  He ordered a burrito bowl:  rice, beans, chicken, a little salsa and guacamole, but no cheese or sour cream.  Nothing big.  He had eaten that the week before with no reactions.  However, this time the meal had a decidedly stronger kick.  And, instead of merely drinking water as was his usual, the Crohnie decided to wash the meal down with a diet Coke.  Coke Zero, actually.  Usually, he tolerates such an extravagance.  However, before he left, he refilled the cup and downed another 16 ounces or so of the carbonated, caffeinated beverage.  About five hours later he was found on the toilet.  His stools were loose.  Real loose.  Telltale signs of undigested food filled the bowl.  The Crohnie had pushed too far.   And now he was paying the price.  But what was the cause?  It was time for a BSI.



Bowel Scene Investigation.  Before coming down with Crohn's, I rarely thought about or paid any attention to my daily (or sometimes, every other day) trip to the throne room.  I can't remember a time before Crohn's when I actually took a close look into the bowl to examine what recently came out of my body.  In-out was my philosophy. I was never one of those guys to sit for a long time on the toilet.  Unlike some people I know, it was not my preferred reading spot.  There was this guy in college who lived in my apartment complex junior year.  He would sit for an hour or so on the toilet, reading a magazine.  He liked to not only keep the door to the bathroom open, but also the door to the apartment open so that he could see what was going on in the courtyard.  Consequently, everyone could see him as well.  He liked to smile and wave at people when they made eye-contact.  That was never me.

Bowel examination is a very important component of the lifestyle of a Crohn's patient.  In fact, doctors say that it should be something that everyone does as the stool can give one clues about general health. But, again, this is not something that most people do.  There is a taboo-like stigma we place on the process of moving our bowels.   In fact, just saying "bowel movement" sanitizes the whole process.  It's not like we are actually moving our bowels.  Let's face it: we're excreting feces.  It's an excretion process that occurs after your body has absorbed the nutrients from the food.  But it is a process that's essential to our well-being.  It is essential to our survival.  The process itself is very complex and when things aren't going right you know it.  All you have to do is look in the bowl.

The day I ate Chipotle, I had a feeling something was going to happen.  I started having loose stools and more gas by the afternoon.  The previous day, I had only made one trip to the bathroom.  Not that day; I had already gone three times as much.  In the bowl, I saw chunks of tomato.  This would suggest the salsa I had on my burrito bowl.  However, I also had spaghetti the night before and there were chunks of tomato in that meal as well.  The question: was the tomato from lunch or the dinner from the previous night? 

According to the Mayo Clinic, the process of digestion can take several days.  The food moves through the stomach after a couple of hours, then into the small intestine.  That takes a total of six hours or so to complete.  Then the journey through the large intestine usually concludes after a twenty-four hour period.

In Crohn's patients, this process is faster.  The food moves, sometimes in its undigested state, from the body to the bowl in a matter of hours.  This can be due to a flare-up or some other reaction to the food in question.  Caffeine can also contribute to the quick bowel and the loose stools as well.

The only way to determine the cause is to examine the stool.  Sometimes you have to get down on all fours and look directly into that bowel.  Don't think of it as a toilet but a window to you body.  The closest most people come to this is probably when they are about to vomit.  Not for a Crohn's patient.

Bowl examination becomes an art form for a Crohn's patient.  We've learned how to take toilet paper and swirl it in the water to move the particles around.  If needed, we can even pick pieces out of the water with the toilet paper in order to get a closer look.  And not once get our hands dirty.
 
What I was seeing was definitely tomato. But it was difficult to tell if it was from the salsa or the spaghetti sauce.   I swirled the water a bit and thought for a moment what my family would think if they barged in at that time.  I could just hear my son, "Dad, are you playing with your poo?"

And then I saw it:  a small green leaf.  It was cilantro.  What I was looking at was the meal that I had just five hours earlier. 

But what was it that was causing this reaction?  After all, I had had this same meal last week with no problems whatsoever.  Except this time around I had the Coke Zero.  And the salsa seemed to be a bit on the "hot" side this time around.

It was probably one of those things or a combination of both; spice and caffeine.  The bane of a Crohnie. 

Caffeine has always been a trigger for me, but I can usually have a little bit before it affects my digestive system.  Over the last several weeks, I have almost completely given up caffeine, except for the occasional half-decaf coffee I treat myself to on weekends.  At Chipotle, I think I pushed the caffeine too far.  One soda probably would have been fine.  But two pushed me over the line.

Stool examination can be an important diagnostic tool for anyone, not just Crohnies.  Even Dr. Oz recommends it.  "At the end of the day," he says, "you can analyze your body really effectively by looking at what comes out of your body."  In 1997, doctors at the University of Bristol developed a scale to help diagnosis problems in the colon by looking at the stool.  It is called the "Bristol Stool Scale."  There are even apps available to track your movements.  Ah, technology.

Next time I go to Chipotle, I will drink only water and see if I have the same reaction to the food.  I doubt I will.

If there is a reaction, I know just what to do.

My Ling Long, or are you just happy to see me?

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For the longest time, I believed that Crohn's disease was an infliction found only in the colon and small intestine.  Then, I started a regimen of Entocort and learned a painful lesson:  Crohn's can manifest itself anywhere in the digestive system, from the entrance to the exit, both external and internal.  Yes, you can even get Crohn's in your mouth.  Rare, but it can happen.

Last Fall, I began a regimen of Entocort.  This seemed the natural step, as I respond very well to prednisone and Entocort is mainly a steroid released directed into the colon.

However, shortly after taking Entocort, I began experiencing external pain, swelling and bleeding in my lower nether-regions.  One of the side effects, apparently, of Entocort is hemorrhoids.  I stopped the Entocort for a couple of months and my external symptoms went away.  My doctor, unsure if the inflammation was the result of the flare-up or the Entocort suggested that I go back on the Entocort now that the prednisone reduced the swelling.  So I did.  And the problem came back and got worse.  Much worse.

It wasn't hemorrhoids that I was experiencing.  It was severe external Crohn's, complete with inflammation and "Crohn's tags."  Crohn's tags are basically skin tags caused by Crohn's that appear in and around the rectal region.  Nice, eh.  The pain was extreme.  There was bleeding and infection.  During a surgical procedure to determine the problem, my surgeon ended up removing one of the skin tags, but the problem did not go away.  More skin tags appeared.

Back on the prednisone I went.  Several warm baths a day.  Antibiotics, also.

And then I started seeing my Traditional Chinese Medicine doctor.  He, of course, began prescribing herbs for the inflammation.  Honeysuckle, an herb shown to reduce inflammation, was one of them.   As I write these words, I am sipping Honeysuckle Flower Tea.  Quite frankly, it tastes like lawn.  I might as well be out in the front yard licking the grass.  But, over the last few weeks, the inflammation is about gone.  My bowel movements are down to an average of one a day.  And I feel better.  Thank you, Honeysuckle.  You may taste like shit, but if you work then I will continue to gulp you down.

One of the things that Dr. X gave me was a Chinese ointment.  Although it is for hemmoroids, Dr. X said it would help reduce the inflammation from the Crohn's.  Use it, he said.

When I opened up the bag and saw the box, I laughed.  Ma Ying Long.  You've got to be kidding, I said to myself.  This sounds like a joke out of a John Hughes' film.  Ma Ying Long.  I showed my wife and she laughed outloud, too.  How can I take this seriously?

Most of the instructions are in Chinese, but the ingredients are written in English on the box:  Synthetic Musk, Pearl, Bezoar, Calamine, Amber.  Inactive ingredients:  Vaseline, Lamoline.

Fair enough.  I wasn't quite sure what some of those ingredients were.  Pearl?  The thing found in oysters that people turn into jewelry?  This is going to relieve my Crohn's? And what the hell is "bezoar?"

The first thing I noticed was the smell.  Yes, there was musk in this stuff.  Lots of it.  In fact, it was almost overbearing, the smell of musk.  However, I used it anyway.  After all, I wasn't spending time out in the woods so I didn't have to worry about attracting some animal looking for a mate.

The smell was so much, I ended up only using it at night.  I didn't want to draw attention to myself at work, especially since I spend my day around teenagers  They have amazing olfactory senses. And the last thing I wanted was to be called out by hormone-induced students.  "What is that smell?"  I could hear them ask, wrinkling their little judgmental faces.

The ointment is interesting.  It produces a cooling sensation which goes to the core of Chinese medicinal philosophy:  Crohn's is caused by "heat" in the colon.  But, it seemed to work, I think.  Even with the few times that I ended up using it, it didn't make things worse, that's for sure.  Dr. X thinks I should continue to use it a couple of times a week as a preventative measure. 

So, I decided to do some research on the stuff.  It is made by a company in China that has been around since 1582.  But I wasn't sure about some of the ingredients.  What the hell is bezoar?

Some things are better left not knowing, I imagine.  And many people live their lives like this:  "Don't tell me if it is something I don't want to know."  I am not one of these people.  And in the age of the internet, most things can be uncovered with a click of a few buttons.  And here it is:

Bezoar is basically a hairball.  It is a mass of swallowed fiber found in the stomachs or intestinal tracts of certain animals.  It has been used for centuries in traditional medicine and in ancient times as an antidote to poison.   In fact, Harry Potter learns about bezoars in his first year in Potions class and uses one to save Ron Weasley in Harry Potter and the Half Blood Prince.    In Traditional Chinese Medicine, the bezoars come mainly from ox and cattle.  It can also be made synthetically.  How this is done, I have no idea.

And bezoar is in my My Ling Long.  This may gross some people out, but Crohn's patients are rarely grossed out.  The things we go through have numbed the "gross-out" portion of our brains and few things, if anything, can turn our stomachs anymore.  If I ever find something that actually grosses me out, I'll be sure to let you know.

Upon further research, I have discovered that this My Ling Long ointment has quite a following.  Almost, cult-like, I must say.  Just go over to Amazon.com and read the comments:

"This product is INCREDIBLE! Finally Something that works!"

"Like a popsicle up my bum."

"Those Chinese really know their hemorrhoids, I'd like to thank them from the bottom of my bottom."

"I Can Live Again!"

"Do your butthole a favor and get this!!"

One commenter addressed the issue of smell and put it into perspective:

"Okay, I find all the reviews of this product that comment on smell to be amusing. You are applying it to your anus. It is not the best smelling part of any body. Pretty much, almost anything you put on it, smells better than its natural state. This stuff smells like mentholated patchouli incense... much better than a hemmoroidal poop chute."

Thanks J. Stern, "Professional Slacker" from Pittsburgh for your candor.

So this manifestation of Crohn's was a surprise. Just when you think you know everything about your infliction, someone comes to you with a new diagnosis.  Believe me, I was shocked when I awoke from my procedure and was told, "You have anal Crohn's."  And, with all of the problems that I have had with Crohn's over the years, this was by far the worst.

I just hope honeysuckle and My Ling Long does the the trick.  If not, I will have to look for something else.

Perhaps a potion?

 

Mistress Coffee

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It's Saturday and it's a day I have allowed myself to cheat.

As a Crohn's patient, we know there are certain things that we shouldn't eat.  We become very in-tune with our system and know basically how much of a trigger food is needed before it causes a flare-up.

I have two never-fail trigger foods:  fries and coffee.

I can do without the fries.  I like them, of course.  Who doesn't?  But I don't need fries.  If I never have another fry in my life, I would be okay with that. 

Unfortunatley, I cannot say the same thing about coffee.

I don't know what it is about coffee and crohn's, but I assume its the caffeine.  I used to drink a lot of coffee.  Before Crohn's, there was a time in my early teaching career when I would drink basically a pot of coffee, ten cups of so, in a morning.  Then I started suffering from palpitations.  Then I cut down the coffee.

Lately, before the most recent flare-up last Fall, I was drinking about four cups a morning every day.  That was my limit.  Anything over that and I would find myself spending more time in the bathroom.  Then I started seeing my Traditional Chinese Medicine doctor and was told that coffee "adds heat" to the colon and should be avoided.  It's not only the caffeine, I was told.  Coffee in general is not good for the colon, according to the Chinese.  Drink tea instead, he told me.

But tea is not the same thing.  I don't mind tea but it doesn't have the aroma or the bite of coffee.  It doesn't open my eyes in the morning and remove the fog.

In fact, I have come to realize that coffee may be the greatest thing discovered by man.

Over the last couple of months, I have given up coffee, beer and wine---among other things.  If you would have asked me a couple of months ago which of those three I would miss the most, I would have said wine.  I like a nice glass of wine for dinner.  When my wife and I play scrabble like an old married couple, I like a glass of wine.  I like to sip wine by the fire out on the deck.

But now, I would say coffee.  I miss it in the morning.  I have tried coffee substitutes, but frankly they don't come close to coffee.  I can tolerate Teechino.  The "Mocha" blend is quite good, actually.  But it is not coffee.  It looks like coffee, it tastes vaguely like coffee.  But it does not smell like coffee.  At work, in the morning, everyone is walking around with coffee cups and the aroma is in every office you walk into. When I see a colleague walking down the hall with a Dunkin' Donuts cup, I want to knock him down and snatch it. 

So, instead of becoming someone who assaults others for what they have, I have decided to cheat.

I am feeling better, that is for sure.  How much can coffee hurt?  I know if I drink a lot of coffee, I will be feeling it.  Before the flare-up, if I had more than 4 cups I would notice the difference.  Now, I limit myself to two cups, just on the weekends.

Right now, as I type these words, my boys are in the other room watching Phineas and Ferb and I have the morning paper spread out in front of me.  The aroma of coffee is wafting through the kitchen.

Life is good.

The blend is 1/2 decaf.  So, I cut out a good portion of the caffeine, the main culprit.  And it works for me.  No difference in my system.  I don't dare go over this amount, however.  As I mentioned, we crohnies sure know our bodies.

So, I have become a cheater.  And my mistress is coffee.

Just please don't tell Dr. X.

Drinking Honeysuckle tea...next, Absinthe?

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Pharmaceuticals scare the hell out of me.  Especially the variety that have "black box" warning labels, such as Humira.  Humira can cause tuberculosis and fatal fungal infections such as histoplasmosis. Of course, this is rather rare.  But, hey, I don't particularly want to be on the wrong end of a statistic.   This is probably the main reason why I am putting myself through this:

I am probably postponing the inevitable, perhaps.  I don't know.  I am feeling better using alternative treatments.  But a Crohn's patient knows that feeling better is fleeting, and conditions of well being can change at a moment's notice.  I am almost done with my prednisone and over the last two days I have noticed some more external inflammation and a slight pain.  Was the pain always there and I am just feeling it now?  Am I just more aware at the moment because anxiety is pushing me to fear the worst?  Was it something I ate?  Could it be the moon?  Who knows.

Today, I saw my Traditional Chinese Medicine doctor.  He tested some more food for me.  I did not have a reaction to potatoes, soy or bacon. (Thank God for that.  It's bad enough giving up milk.  But bacon?  I think not.)

I have been running low on my honeysuckle pills. I am supposed to take 12 of these pills a day.  So, I have been rationing the honeysuckle; taking a fraction each day just so that I could stretch it out until my appointment today.   I told him that I needed more honeysuckle and he noticed my hoarse voice.  I have a slight cold and the talking that I have been doing at work has made my voice worse.  But, I assured him, I was drinking tea and not coffee.  When I told him this, he said, "I am going to give you some honeysuckle tea.  If you are drinking tea, you might as well make it medicinal."

So now I have honeysuckle tea to drink.  But I was intrigued.  It's my nature to question.

"What does honeysuckle do?"  I asked.

The thing about Dr. X is that he's not very scientific.  He speaks in weird metaphors---metaphors that have been used, apparently, by the Chinese for hundreds of years.  "The honeysuckle cools down your burners," he said.

So it is as simple as that:  my burners are too hot.  As I mentioned in a previous post, the Chinese consider Crohn's to be caused by "too much heat" in the colon.  In Traditional Chinese Medicine, everything is reduced to "hot" or "cold" or other elemental distinctions.

A friend of mine at work is currently getting acupuncture and herbal treatments as well, but in her case it is for sinus issues.  She, too, expresses a fascination with the treatments but also a confusion in regard to its scientific basis.  She compared it to that scene in Princess Bride when Westley was brought to Miracle Max for treatment to bring him back from being "mostly dead."  Herbs, tinctures and mysterious apparati bring the young man to life.  That is what it is like for those of us raised on Western medicine taking a leap into treatments that are explained with a mere "it cools down your burners."

Furthermore, when one looks up honeysuckle, they are plunged into this realm of borderline alchemy.  According to the Desktop Guide to Herbal Medicine, honeysuckle "clears damp heat and removes toxins."  It also reportedly "helps those who are stuck in the past with memories or regrets."  Okay, have fun storming the castle.

But perhaps there is a scientific basis for this for all of this mysterious talk.  Herbs were the first medicine used by humans and the basis for most pharmaceutical drugs.  Many drugs that are patented by big industry start out by mimicking the property of herbs.

Honeysuckle has anti-inflammatory properties and has been used for hundreds of years to treat a variety of ailments, from arthritis to eczema.   It has antibacterial properties as well.  In one study, over 140 compounds were isolated in honeysuckle, many of which have numerous medicinal properties.

As I write these words, I am taking my nighttime dose of herbs---complete with a full dose of honeysuckle.  Tomorrow, at work, I will quietly sip my honeysuckle tea and let its anti-inflammatory properties work.

I have been reading much about herbs lately.  In researching honeysuckle today, for example, I came across another herb that is used to treat Crohn's:  wormwood.

Wormwood is an herb that can be found in absinthe.  Although absinthe was popular over 100 years ago, it became known as the "green fairy" and was consequently vilified for being not only addictive but also hallucinatory.   Much of this was sensationalized for temperance purposes.  However, in recent years, absinthe has made a comeback and now can be purchased in the United States after a decades-long ban.

Wormwood, the main herb found in absinthe, also has medicinal properties.  In fact, there have been several studies done using wormwood to treat Crohn's.  In 2007, a study of wormwood in Crohn's patients revealed that 90% of those treated with wormwood showed improved conditions with 65% going into full Crohn's remission. "These results strongly suggest that wormwood has a steroid sparing effect," concluded the authors.  In other words, wormwood works as good as steroids without the negative effects.  Wormwood was cited in a 2010 study as being just as effective as TNF blockers (such as Humira) in the the treatment of Crohn's.  Apparently, wormwood can naturally reduce the body's tendency to attack its own cells.

If that's the case, I can buy wormwood capsules at my local healthfood store for a fraction of the $30,000 Humira costs a year.

Or, I can just drink absinthe.  A lot of absinthe.  

Actually, I have been wanting to try absinthe for a long time...not for the wormwood, mind you, but for the novelty of drinking a green spirit and pretending to be a bohemian writer in fin de siècle Paris, just like Ewan McGregor in Moulin Rouge! 

But perhaps now I have another reason.