Crohn's, Pus and Nurse Ratched

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I have two young boys, so the potty talk in my house is pretty excessive.  As it is in most households with young kids, I assume (and hope).  However, as we get older, potty talk gives way to polite conversation in which certain things are never discussed.

Unless you suffer from Crohn's, that is.

Modesty is not something that we embrace (hence this blog).  People who have Crohn's can discuss all sorts of things that most people could never imagine uttering.   Although everyone poops (as the title of that children's book tells us), most adults walk around like they don't.  Not us Crohners.  After all, there is not much sacred anymore when you have to lie face down on a table that tips forward to the point that all you can see are the specks on the tile floor, your body positioned like an A-frame house.  In this position, the doctor can then spread your butt cheeks and get a good look at your backside, like a giant peering into the attic window.  Probably not too different from stirrups at the gyno, I imagine.  "Should I close the blinds?" a nurse asked me at my last appointment.

"Naw.  I like the natural light," I replied.  If someone wanted to look in, be my guest; it sure wasn't a pretty sight.

When one has Crohn's, they become intimately knowledgeable about their digestive system.  We understand a thing or two about mucous membranes.  We can detect subtle changes in consistency and odor.  We can talk about the problems we may have with our ileum.  Or detect the smallest traces of blood in a swirling bowl of seemingly primordial goo.

Pus isn't a big deal for us.

Last week, I came down with a fever.  It was at the most inopportune time, however.  My sister, brother-in-law and nephews were over.  I started feeling chills.  My temperature was around 100º.  The chills got worse and I had a hard time controlling the shaking.  My first thought:  the flu.  After taking some Advil, I was feeling better.  But then my temperature shot up to 101.5º.  That night I was shaking so bad, I almost hyperventilated.

Over the course of the next 48 hours, my temperature fluctuated between 94º and 101.6º.  I saw my general practitioner the next day and he was pretty astute.  He did a flu swab---nothing like a long Q-tip shoved up your nose.  "This is going to make your eyes water," said the nurse.

And it did.  Gushers.

But it wasn't the flu. "Didn't think so," said my doctor.  "I think it's bacterial.  You usually don't see those fluctuations in temperature with a virus."

So he put me on a Z-Pak.  All I thought was that this was not related at all to my Crohn's and was still pretty sure I had some type of virus.  But, I took the antibiotic anyway. 

A day later, the pus came.  Lots of pus. 

Since the Crohn's moved lower and is now both internal and external, I have been dealing with discharge and pain "down there" on a daily basis.  It was actually getting better over the last couple of weeks.

Or so I thought.

The pus was pretty excessive.   And the pain increased.  The antibiotic was drawing the infection out--probably something that I have been fighting for awhile, but since the area was so inflamed it wasn't noticed when I was in the office last. 

But, there it was, dripping from my butt.  There wasn't much I could do to control it it, except to keep it as clean as possible.  Use gauze if necessary.  Frequent trips to the bathroom.

Thank God for the bidet.  That has been a life-saver.

So, here I am, several days later and the infection no longer hurts.  There is hardly any pus drainage anymore.  The inflammation is better.  Thanks, Z-Pak.

What happens next?  I may go on another round of a different antibiotic just to make sure it is cleared up.  My fear is that the problem may be a fistula or an abscess.  But my surgeon doesn't think so.  He hadn't seen any evidence a couple of weeks ago.  He actually prescribed Flagyl for me at that time, but not for an infection but for inflammation. "For some people," he said, "Flagyl helps with anorectal Crohn's.  We don't know why, it just does."

That's the thing about Crohn's: much of it is a mystery.

But, like the good patient I am, I didn't take the Flagyl.  I didn't want to take an antibiotic for 30 days if not needed.  Plus, I started taking the Chinese herbs a couple of days later so I didn't feel like it was necessary.

After telling that to my surgeon's nurse the other day, she went Nurse Ratched on my ass and basically blamed the infection on my failure to follow directions.  After a minute or two of condescending lecture, I began to wonder two things:  1) did this nurse ever play Nurse Ratched in some community theater production of One Flew Over the Cuckoo's Nest and 2) maybe I should start taking the Flagyl next week.

"You should probably start taking the Flagyl next week," she said.  She can also read minds apparently.

So, I will begin that treatment in a couple of days.  But I am still unsure if I want to go 30 days on an antibiotic.

Seems a bit excessive, especially for someone with colon issues.  Antibiotics kill the good bacteria with the bad, so this could make my colon worse---all to make my rectum better. 

Oh, the decisions we have to make: do I protect the butt or the flora in my colon?  I don't particularly like the pus, that is for sure.

And you probably don't want to read about pus again, I imagine. 

So.....hello, Flagyl.

My New Bidet

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Anyone who has Crohn's, IBS or any other colorectal problem, knows the importance of personal hygiene.  When someone is going upwards of ten times a day, things can get rather inflamed and irritated.  Keeping the area clean is of the utmost priority.

Enter the bidet.

Most Americans have no idea the glory of the bidet.  Most of the world, especially countries in Europe and in Eastern Asia, have bidets as a standard household item.  The term comes from the French for "pony," no doubt because of the way one has to straddle the device.  However, today the bidet is often integrated into the standard toilet.

My new bidet.

My friend a few years ago installed a bidet toilet seat.  This is a pretty high-tech thing, with an electronic control panel on the wall and a heated seat (much like those available in Japan.  See below).  My new bidet is not so high tech (and not so expensive).  It does what it needs to do, though. 

It is the Luxe Elite 320 and it attaches directly underneath the toilet seat.  I chose this model because of the fact that all of the fittings are metal, has a hot water import and was relatively cheap.  From Luxe Bidet, it was only $71 (with coupon code), and that included free shipping.  This is a company based out of San Francisco.

When you first use a bidet, it takes a little to get used to.  You need to know exactly how to sit so that the stream goes to the right place, so to speak.  Plus, pulling up on the lever needs to be done extremely slowly, or the jet turns from a gentle wash to an enema.   Plus, the water is a little cold at first. I have found that you set the dial to hot and turn the stream to a little trickle for about a minute or so to get the hot water moving into the seat before you use it for its intended purpose.

So far so good.

By far, the culture with the most experience now in making some of the most high-tech toilets is Japan.  They have toilets that, in addition to all of the cleaning and drying functions, also can analyze urine and stools to detect medical problems you might be having.  Check this out:




The Japanese know their toilets and put a great deal of effort into personal hygiene.  For those who rely solely on toilet paper, this may seem a little strange.   Do a quick search on Youtube for Japanese toilet, and what you will find is a lot of videos of Americans and other foreigners laughing or marveling at the Japanese toilets. Like this one:




This bidet is one of the best purchases I have made in a long time, I must say.  And it is a must for anyone suffering from Crohn's or IBS.

Milk Protein and Bacteria: A Possible Link to Crohn's?

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At my last appointment with Dr. X, I brought in yogurt, cheese and orange juice.

Since I already had a reaction to milk, I was fully expecting the same thing to happen this time.  However, I was hoping that I wouldn't; after all, I love cheese.  And the thought of doing without cheese is not particularly appealing.

So, I was ready.  Still skeptical, I was determined to do all that I could to keep that leg from giving out when Dr. X pushed against it.  The first thing tested:  cheese (in the form of a mozzarella stick).  After he first putting my body into alignment and testing the strength in my leg, I placed some cheese in my mouth, chewed it a little.  Dr. X pushed.

Slam!  My leg gave out again.  Same with the yogurt.  However, I was able to resist with the orange juice, no problem.

"Wasn't even close," Dr. X said.

So there it is:  my body reacts negatively to milk.  I am not lactose intolerant.  My reaction, it is believed, comes from something else in the milk.  Most likely a protein called "casein."  Casein is actually used in many products.  It is a common protein found in power bars, for example.  It is also a binding agent used in glue and paint.

Of course, being a skeptic and also someone who relishes the process of research, I have done a lot of reading over the last few days on this issue.  And it is fascinating.

First of all, let me just say, that my mom reminded me of something from when I was an infant:  I had tremendously bad reactions to milk when I first entered this world.  So, as per doctor's recommendations at the time, I was fed milk on a daily basis a drop at a time, gradually increasing the amount, until I could fully tolerate the milk.  This is something that is often done for infants and children who have severe reactions to milk.

To me, things are coming together.  One of the theories involving diseases with chronic inflammation is that the inflammation is the result of continual exposure to an environmental element and, as that element latches itself onto tissues, the body's immune system steps up and attacks the tissue that has absorbed the element---in this case, perhaps something from the milk, such as casein.  One of the common symptoms of having an adverse reaction to casein is increased mucous production.  This can occur anywhere around the digestive tract and in any mucous membrane.  It could even manifest itself in chronic lung problems and sinus issues as well (all of which I have had issues with over the years).

It's just a theory.  But its the closest thing I have had in the last 12 years to point to a cause.

But this brings up many more questions than answers:  Why did this just start happening 12 years ago?  Wouldn't I have had Crohn's symptoms earlier?  What about other joint or inflammation pain--is that related to milk when that milk protein doesn't actually touch those tissues?  If I had a milk protein reaction, why did I not experience it at a time in my life when I drank more milk?

When you have a disease like Crohn's, you are constantly looking for answers and solutions.  Over the last 12 years, I have tried just about everything and supported almost every theory regarding the origins of Crohn's and its treatment.  Last year, for example, I decided to try the Specific Carb Diet (SBC).  In this diet, I removed all complex carbohydrates.  This was based on a belief that harmful bacteria was the cause of Crohn's, so removing those carbs that fuel harmful bacteria in the gut could relieve symptoms.  So I removed most wheat from my diet and white sugar.  I starting eating a lot of nuts and....milk products.  I almost doubled my intake of dairy, mostly in the form of yogurt.

After three weeks on the SBC diet, I was feeling worse and soon I was on prednisone again.  And I have been on prednisone just about ever since (except for three months in summer of last year.  Why was summer okay?  I don't know.  Less stress perhaps?).  Currently, I am taking 20 mg a day, hoping to start tapering next week.

So this milk thing makes some sense to me. 

And here's the weird thing:  Crohn's bears a striking resemblance to Johne's disease.  Johne's disease is a gastrointestinal disease mainly found in cows and other ruminant animals.  The disease in cows is caused by a bacterium called Mycobacterium avium paratuberculosis.  This bacterium can survive the pasteurization process and can be transfered to humans through the drinking of milk.  Recent studies have suggested that most patients with Crohn's have the presence of this bacteria.  However, there is no solid test available for this, other than removal of parts of the colon for analysis.  And people try to avoid that invasive surgery at all costs.

Plus, there is not a concrete link between the bacterium and the symptoms of Crohn's.  Just because its there, doesn't mean it is the cause of problems.  We have lots of bacteria in our bodies, after all.

There is an organization called PARA  (Paratuberculosis Awareness) that fully believes that this bacterium is the cause of Crohn's.  They have a website at http://www.crohns.org.  There they break down the evidence and support this idea that Crohn's is caused by Mycobacterium avium paratuberculosis.

There is an increasing amount of studies that suggest this link is a very real possibility.  In Australia, they are developing an antibiotic treatment specifically for ParaTB to be used in Crohn's patients.

In the meantime, it looks like no more milk for me.

"Holy sh*t, milk did that?!"

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I am skeptical of just about everything.  That's just my nature.  I need to see proof before I believe in anything.  If there is no proof, then I am not sure you'll get my full support.

This leap into Traditional Chinese Medicine is not the easiest thing for someone like me.  Some of it makes sense and some of it....well, some of it is just so alien to me.  I have to constantly tell myself, "the Chinese have been doing this for thousands of years, there must be something to it."  I say that to myself often as I lay in a dim room with needles sticking out all over my body.

The herbs make sense to me, though.   Humans have been using herbs since the dawn of civilization.  In fact, my colon has calmed down a great deal.  Mind you, I am also on 20 mg of prednisone a day.  But I have been on 20 mg of prednisone a lot over the last several months and, with a week of 41 herb-based pills a day, my colon is feeling pretty normal.  Well, normal for me, that is.  The external swelling and inflammation--that is a different story.  But better than it was a month ago.

Dr. X had asked me to bring three things to my last appointment:  wheat, corn and milk.  He was going to test my body's reaction to each of those things while I ate them.  How he was going to do this, I wasn't sure.

What happened blew my mind and caused the skeptical side of me to go into an apoplectic fit.

Laying on my back, Dr. X told me to take a bite of the wheat bread, to chew it but not swallow.  Then, he did a muscle test.  As I held the wheat in my mouth, he pushed against my leg as I laid on the table. He told me to resist his pressure.   I held my right leg out to the side as stiff as I could as he tried to push my leg back to the center.   Now, Dr. X is probably in his early 70s.  This wasn't very difficult.

"Good," he said.  Then it was time for the corn.

Same thing.  I held the man back.  I was feeling good.

Next came the milk.  I held the milk in my mouth and laid back down, fully expecting the same result.

But I was wrong.  My legs snapped together as if my muscles suddenly vanished.  In my shock, I swallowed the milk.

"There you go,"  said Dr. X.  "Your body does not like milk."

I was flabbergasted.

"It's all neurological," the doctor explained.  "Your tongue sends the signal to your brain and if it senses something that it knows causes harm, your body reacts immediately.  That's what you just experienced."

We tried it again.  This time, I was determined to hold him back.  I put the milk in my mouth, laid down and tensed my muscles as much as I could.

But it was useless.  My legs snapped together even faster this time.  No resistance at all.

He must have noticed the look on my face.  "I've been doing this for almost 40 years.  And I sometimes forget what it must seem like to someone who has no experience with Eastern or alternative medicine."

He then proceeded to prepare me for an acupuncture treatment.  He stuck needles throughout my abdomen, legs and arms.  I became a human pin cushion.  He then covered me in a blanket, turned down the lights and told me to relax.  But I couldn't.  My mind was spinning.  I couldn't explain at all what had just happened.  It defied all logic.

This technique is called Applied kinesiology.  It's been around for about 40 years and is a form of alternative medicine based the idea that body feedback can be observed to diagnosed ailments.  Most of the scientific community has not embraced applied kinesiology, some going so far to call it "quackery."  There is little scientific evidence to support its claims but people all over the world use it and swear by it.

I don't know what to think.  I tried replicating the results at home without success.  But my 7 year old is not a doctor and the bed I was laying on was not as hard as the one in the office.  I probably wasn't aligned right.  And my son wasn't pushing, I imagine, on the right muscle.  Plus, he's only seven.

All I know is that I tried my hardest the second time to keep my leg stiff and I couldn't do it.  It was like I had no control over that leg at all when I had the milk in my mouth.  Last year, I went to an allergist and was tested for milk allergies.  It came back negative.  I am not lactose intolerant, but this may be more than just lactose.  Perhaps I have a reaction to certain milk proteins or amino acids or something.  I just don't know.  I've given up milk before and never noticed a difference.

Needless to say, I was told to avoid milk.  Next time, Dr. X wants me to bring yogurt, cheese and orange juice.

We'll see what happens on Tuesday.  In the meantime, I'll continue taking the herbs and wrestling with the skeptical side of my brain as I try to fully comprehend this whole experience.

More later.

My Introduction to Traditional Chinese Medicine

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If you were to meet my Traditional Chinese Medicine doctor on the street, you would never think he was a doctor of Chinese medicine.  First of all, he's not Chinese.  That, of course, doesn't matter.  But it's kind of like walking into a Mexican restaurant and everybody who works there has blond hair and blue eyes.  The food may be good, but are you getting the "real" thing?

My doctor is passionate about Chinese medicine, that's for sure.   He's been practicing it for 40 or so years.  He is an older gentleman, with dark hair and a dark mustache.  He looks like Mario from Nintendo, only older and taller.   And he's not a cartoon.

We'll call him Dr. X.  That sounds mysterious.  And it fits for Chinese medicine.

Chinese medicine is mysterious, especially for someone in the West, raised on Western concepts of medicine.  The Chinese have an entirely different way of approaching medicine.  It's about balance and harmony.  They throw terms around like "Hot" and "Cold" and apply it to your condition.  Heat is bad and certain foods, like coffee for example, put heat in the colon.  Tea, on the other hand, is "cold" and that is soothing to the colon.  It's all about balance.  The ying and yang.

Dr. X and I talked for awhile at my first appointment.  Tried acupuncture for the first time.  And he prescribed a bunch of pills for me.  All herbs designed to provide balance to my system and remove that "heat" from my colon.  Here is what I am taking:

• Honeysuckle-12 tablets a day.
• Agrimony--12 tablets a day.
• DHT-INT--12 tablets a day. This is a blend of peach seed, Job's Tears seed, Baikal Skullcap root, Patrinia, immature bitter orange fruit
• RBX--15 tablets a day.  Pulsatilla root, Lithospermum root, Sophora fruit, Sanguisorba root, Corydalis rhizome, Rhubarb rhizome, Red Peony root, Licorice root

This  is divided into 3 doses, taken before or after meals.  The hardest thing about taking these 17 pills at once is the amount of water than needs to be consumed.  Yesterday, after taking pills in the morning, I started on my way to work.  My ride to work is about 40 minutes and halfway there I realized something:  I had to pee.  Bad.  Luckily, McDonald's was nearby and off I went.

The problem with stopping at McDonald's in the morning is the smell of coffee.  The one thing that I look forward to every morning is my coffee.  In fact, just last week, we bought a new coffee maker.  And McDonald's smelled of coffee that morning.  But I haven't had any coffee since meeting Dr. X last week.  He gave me a list of food to avoid:  coffee, alcohol, seeds, nuts, chocolate, spicy foods, raw fruits and vegetables.  Not only are these things difficult to digest---and we want to lessen the distress on my colon--they also contribute to the "heat" that  damages my colon, according to Traditional Chinese Medicine.

So, I no longer have my coffee.  Once my condition is under control, and Dr. X thinks that the probability of me experiencing relief from Traditional Chinese Medicine is very good, then I may be able to re-introduce some of these foods later.  But, for the time being, I am missing my coffee.

And my wine, that is for sure.

Are things working?  I don't know.  My colon has calmed down a bit.  I go maybe two times a day and it's relatively normal.  My lower colon, both interior and exterior, is still very inflamed.  Talk about a pain in the ass.  Haven't noticed much change there, nor did I expect to experience much change this quickly.  Patience is the key, as Dr. X told me.  But I am impatient.  Like most people, I want things to get better now.  That's the way we work in the West and Western medicine caters to this desire.

Dr. X told me that he has a patient who has Crohn's and was going 17+ times a day before he started this treatment.  I've never been that bad.  When I first was diagnosed with Crohn's, the most I ever went was 14 times in one day.  This other patient now goes only once a day and he is no longer taking any drugs.  My colleague at work who gave me Dr. X's contact information told me that his good family friend has Crohn's and it has been controlled with the help of Dr. X.  So I am hopeful.

But skeptical as well.  Much of what what we have done--from the herbs to the acupuncture-- seems a little alien to me.  And that would fully be realized at my next appointment.  Let's just say that Dr. X blew my mind.

And it involves milk.

More on that later.....

M2A Camera Documents Food and Its Effect on the Body

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No one knows what causes Crohn's Disease.  There are many opinions on the matter.  Some say it is genetics.  Others point to microbes.  Because there is no consensus on its cause, most treatments involve correcting the symptoms of Crohn's, instead of the cause.  Millions of dollars are spent on drugs that try to make people feel better yet not necessarily curing them of the disease.

Take Humira, for example.  Humira is a TNF blocker used to treat rheumatoid arthritis.  TNF stands for "Tumor Necrosis Factor."  What this drug does is block those T-cells in your immune system that attack certain tumors and invaders.  It severely suppresses the creation of those cells.  Consequently, it can have a tremendous effect on your immune system by compromising it to the point that certain infections, both bacteriological and fungus-based, can take hold in your system.  The FDA has put all sorts of warnings on Humira, requiring that it be made public that TNF blockers can cause serious infections caused by the medication, in addition to heart failure, lymphomas and multiple sclerosis.

However, Humera and other TNF blockers have had success in treating Crohn's, based on the idea that Crohn's is an autoimmune disease and if the immune system is "blocked" it will no longer attack digestive tissue.

But the drugs don't address the fundamental root of this theory:  what is causing the immune system to attack the organs?

One theory regarding Crohn's disease is that the disease is caused by environmental factors; most importantly the foods that we eat.  Since the prevalence of the disease is higher in industrialized countries where processed food is a large part of the diet, some researchers propose that Crohn's and other digestive disorders are caused by the body's inability to digest certain foods and chemicals.  After all, they argue, our bodies have developed over hundreds of thousands of years and knows what to do with "real" food.  Throw in some chemicals, perhaps some genetically modified food here and there, and the body doesn't know how to react and thus you have problems.

Traditional Chinese Medicine comes more from this end of the spectrum.  Using herbs and acupuncture, the hope in TCM is to restore balance in the system; to treat the cause rather than the symptoms.  This makes sense to me, but is also predicated on the belief that the root of the disease is food and environment related.

Recently, at a TED conference in Manhattan, a presentation was made showing the effects on the digestive system when eating processed food.  The M2A camera was used on two patients, one eating processed Ramen noodles and another who had eaten home-made noodle.  An "M2A" camera is a "Mouth to Anus" camera.  It is swallowed and over 8 hours of video is recorded.  The results are pretty amazing and throws a little light, perhaps, on this issue:





Interesting, eh?

I have my second TCM appointment today.  I was told to bring wheat, corn and milk.  My doctor is going to check my reactions to these foods as I eat them.  In addition, this is day 2 of my herbal therapy regimen.  More on that later.

Welcome to "41 Pills a Day"

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Do I really take 41 pills a day?  If you count the prednisone and the Prevacid--vitamins, too--I am pushing closer to 50 pills a day actually.  Not that this is what I have been doing since I was diagnosed with Crohn's some 12 years ago.  I have had my good years and bad.  There have been times when I haven't needed to take much of anything. 

This is not one of those times.

Over the past several months, things have gotten worse.  In fact, the condition became so debilitating that I couldn't work for almost two weeks back in January.  The prednisone, which I had been taking since last Fall, was again increased.  My doctors are advocating a more aggressive treatment.  They want me to take Humira.

I have tried just about everything else.  From Asacol to Entocort, from Pentasa to Remacaid---nothing has provided relief.  (I actually think the Entocort made things worse).  And now, Humira is on the horizon.

I'm not sure this is something I want to do.  At least, not right now.  After all, the side effects of Humira can be more debilitating than Crohn's itself.  The last thing I want is a fatal infection.  I know:  chances are small, but there is a chance nonetheless.

So I have decided to try some alternatives to the various drugs that have been prescribed for me.  This week, I saw a practitioner of Chinese Traditional Medicine (more on this later).  He put me on a regimen of herbal therapy--41 pills in all, taken over the course of a day.  I have never taken so many pills in my life.

Today, I was talking with a colleague of mine at work.  We often discuss our ailments in the morning and she said to me, "You should start  blog."

I laughed and thought to myself, "Yeah, right."  I'm 43 years old.  A teacher who consistently has stacks of papers to grade.  A wife and two young boys at home.  In addition to an online radio station, I maintain several blogs as it is.  And, let's not forget this Crohn's-thing.  Sometimes, all I want to do is just lay down and do nothing.

But then I thought about it.

And I'm on prednisone, after all.  This is what happens.

So I welcome you to "41 Pills a Day."  Over the course of the next several months, I will document my experience with herbal therapy and acupuncture.   And hopefully others will join in the discussion.

If you don't like reading about poop or the bodily functions that produce it, you may not want to visit again.  If you are experiencing or have experienced the joy of Crohn's, please join the conversation.

There's comfort in knowing that we are not alone.