Time to Catch Up

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A friend of mine just texted me.  "Do you still have the Crohn's blog?" she asked.

I was about to text her, "Yes, I do."  But then I realized that I haven't posted in more than two years. Two years!

Why have I not graced the pages of this online journal with shit-stories and tales of my colon in over two years? Because I feel great!

Shortly after my last post, when I was suffering from chronic constipation, I was placed on another regimen of azathioprine, which is known as Imuran.

And it worked this time. Like a charm.

Currently, I am taking 100 mg of the Azathioprine (Imuran) plus 30 mg of Lansoprazole (Prevacid, for my GERD).

Although I still get constipated occasionally, I feel great overall.  There are some days I don't go---kind of like before the Crohn's diagnosis.  Some days I go more than once. Interestingly, that usually occurs on weekends. (Like today: 3 times!)

I have been tracking my bathroom habits with a great app called "G.I. Monitor." This handy smartphone app tracks progress, charts "quality of life," and allows you to document your bowel movements. This includes frequency, presence of blood, urgency and form.

Currently, my "Quality of Life" is at 9.9. Yeah, me!

My average BM for the week is 1.1.

There is a lot more this app can do, but I don't use the other features. Weight loss isn't a problem for me, as it is for some who have Crohn's. So I don't use that feature. Plus, I don't track my meds or my meals, either.

This is my BM frequency over the last 6 months:


As you can see, some days I go more, some days I go less. But I am nowhere near the levels I was years ago when I could go 12-15 times a day.

Don't get me wrong, I still have Crohn's. My last colonoscopy showed it. But the symptoms are not as severe.

For the time being, anyway.  And that's the thing with Crohn's: you never know when it will rear it's ugly head again.

Until next time.

BDJ

Shit Watch 2013 is Over

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So Shit Watch 2013 has finally ended. After several days of Miralax and Proctofoam, my lower colon opened up just enough to....you know, let loose.

Normal Colon

Why has this been happening? My doctor thinks I probably have a colon stricture. This is a narrowing of the colon---for me, the lower colon. This was the area last year that gave me a tremendous amount of difficultly that had resulted in my switch over to Imuran. As I have mentioned before, Crohn's can manifest itself in any part of the digestive system---from the mouth to the anus, internal and external. Until last year, my Crohn's was intent on hanging out in my upper colon, near the connection to the the small intestine. Apparently not happy with just that neighborhood, my Crohn's bought some real estate in my lower colon--in the anorectal area. The lesions and inflammation there sent me to the hospital and required a new approach to treatment.

Colon with Stricture

It's that area once again that has been causing some problems as of late. Evacuating the bowels (this is the technical term for "taking a shit") has become difficult, due to increased inflammation. However, I have not had the pain that I had last year and this could be due to a stricture.

What causes a stricture? Could be a variety of things--from simple inflammation to a hernia, fissure, twisting of the colon or a tumor. Stress can make it worse. The only thing that can be done to find out the cause is to---you guessed it, shove a camera into the neighborhood and look around.

So I am heading to the hospital again on April 8th for a "flexible sigmoidoscopy." Fun.

Depending on the cause of the stricture, the solution can be relatively easy. According to my doctor, it could be just "ballooning" the area to open it up a bit or simply removing an obstruction that might be present. Biopsies will also be taken on the inflamed tissue as well.

And pictures. Hopefully, plenty of pictures.

Is That an Ass Inhaler?

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Oh, the glories of a being Crohn's patient.

Things have actually been going quite well lately, all things considering. Other than a few days down with the flu, I've been pretty pleased at my progress on Imuran. I am currently at 100 mg a day and have been going one or two times a day. Formed stools, for the most part.

Pretty good, other than for the constipation. Well, what I thought was constipation.

You see, I have had a difficult time--sometimes--going. Straining actually. Like I need to push out a large loaf that turns out to be only a small flat coin. For all the pushing, you expect so much more. "That's all?" I often say to myself in a rather disappointed voice after taking a glance in the bowl. After such a fight, you expect to see something much bigger. Miralax didn't help and I had the same problem in full blown diarrhea-mode when I had the flu.

The problem wasn't the stool, it was the exit. Although I don't have any pain at all (unlike last year), the entire lower section of my colon is inflamed. So it's like trying to push out through an opening that's 90% smaller than normal. Miralax isn't going to make a difference.

Even though I am on vacation in Florida (a sunny 46º here. Brrrr), I needed to call my doctor as I am on day 3 of Shit Watch 2013. So there I was, standing in a crowded parking lot, explaining my symptoms. That's the thing about being a Crohnie, you really don't care anymore what people hear. It's kind of liberating actually, to be able to talk about your "ribbon-like" bowel movements, not caring who is around or what they think.

The nurse called back later and said that my doctor wants me to try "Proctofoam."

"What's that?" I asked.

"It's used to treat anorectal inflammation."

"How do you use it?"

There was a pause. "I'm not sure actually. I've never seen it," replied the nurse. "The instructions are on the package."

Not wanting to be blindsided, I quickly looked up the product. And this is the description from the website:

"Proctofoam-HC® is mucoadhesive analgesic and anti-inflammatory foam prescribed by health professionals for the relief of anorectal inflammation and swelling associated with hemorrhoids, pruritus ani, anal fissures and other anorectal discomforts. 

This unique metered-dose aerosol foam is particularly effective for the relief of postpartum hemorrhoids affecting as many as 3 out of 4 natural childbirthing women."

Okay, sounds good enough--even though I am not a "natural childbirthing" woman.  Then I saw a picture of the product:

I laughed.  I have an asthmatic child and I recognized the cartridge immediately.

It was an ass inhaler.

Having had Crohn's for awhile, I am accostomed to seeing all sorts of procedures, medicine and devices. But this was a first.

Hmmm.  As long as it works I am up for anything.

Even an ass inhaler.

Aluminum: In my pits and in my colon

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I am a sweater.  Always have been.  Big wet circles under my pits are not uncommon.  Therefore, antiperspirants have been an important part of my daily routine.  And I have tried every kind with varying amounts of success.  I even keep an extra stick in my work bag, just in case.

Antiperspirants work by causing water to be drawn into the cells near the sweat glands.  The swelling of the cells squeeze the sweat ducts closed so that they cannot excrete sweat.  As the antiperspirant wears off, the swelling shrinks and the sweat gland can begin releasing sweat once again.

The active ingredient in all antiperspirants is aluminum, in the form of either aluminum chloride, aluminum zirconium tricholorohydrex glycine, aluminum chlorohydrate, or aluminum hydroxybromide.

Aluminum is also a primary ingredient in vaccinations as well.  It serves as an “adjuvant;” that is, to increase the immune response to the vaccine.  The problem is that aluminum is believed to have a negative affect on the immune system in diseases like Crohn’s.   One study in 2007 linked exposure to aluminum to the “induction or the maintaining of inflammation” in Crohn’s. (1) The study suggests that inflammation may increase in the colon with increased exposure to aluminum.  Aluminum is also thought to “stimulate bacterial virulence,” (2) which, according to some theories in regard to Crohn’s, is one of the main culprits of the disease. 

Aluminum is the most abundant metal on the planet and its use in everyday products have increased over the years.  Aluminum is found naturally in some foods, such as tea and other leafy herbs.  However, it is also now used to a greater extent in processed food.  It can be found in flour and baking powder as an anti-caking agent.  Most processed foods with flour, such as tortillas, cakes and bread have very high levels of aluminum.  Medicines, such as buffered aspirin, antacids and vaccines contain large amounts of aluminum as well.  It is found in shampoos, soaps and antiperspirants.

I do not plan on getting all processed food out of my system, but close examinations of labels can reduce one’s exposure to aluminum and other ingredients.  One of the biggest sources of aluminum that is absorbed directly into the bloodstream is from the use of antiperspirants.  This is something that I can have direct control over.

So, last week I decided to ditch my antiperspirant for a “natural” deodorant.  I chose a Tom’s of Main product that contains only natural ingredients.  I wasn’t expecting much, actually.   In fact, I was expecting to sweat like crazy and smell like a hobo.

But that didn’t happen.

In fact, I have noticed that I have actually produced less sweat on a mere deodorant than I did using an antiperspirant.  Weird, eh?

So, I have been aluminum-free in the armpits now for over a week.  My overall aluminum levels must be down.  But have a noticed a difference when it comes to Crohn’s?  No.

Not in the least.

However, reducing the amount of aluminum in my body is not a bad thing, regardless of the Crohn's.  And as long as my sweat glands cooperate, I will continue to avoid the aluminum-containing antiperspirants.

And who knows?  Maybe in weeks or months I may notice a difference. 

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(1) Aaron Lerner, “Aluminum is a potential environmental factor for Crohn's diseaseinduction: extended hypothesis” Annals of the New York Academy of Sciences (2007 Jun;1107:329-45)

(2) R Balfour Sartor, “Mechanisms of Disease: pathogenesis of Crohn’s disease andulcerative colitis” Nature Clinical Practice Gastroenterology & Hepatology (July 2006 Vol 3 No 7) 

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.