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

Tweet

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

Tweet

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....

Tweet

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?

Tweet

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

Tweet

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.

Tweet

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...

Tweet

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