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Wednesday, August 28, 2013

Good Quote

I saw this pop up in my Facebook feed today and thought it was worth sharing:

Fritz, one of the stars of the History Channel's reality series American Pickers, is an antiques treasure hunter who has battled Crohn's for more than a quarter century.

"Crohn's is like a duck," he told Crohn's Advocate magazine. "Ducks look calm, floating quietly on the surface of the water, but underneath they are paddling like crazy. It's the same for people with Crohn's—on the outside you can't really tell, but I'm working really hard to stay in control as much as I can."

Friday, January 14, 2011

Surgery for Crohns

So I have an upcoming surgery for a fistula, and it got me to thinking about my last major surgery.

I need to preface the following by saying that I have had the best doctors and nurses in the world and what follows is purely an attempt at finding humor in my situation, it is not meant to degrade or put down any person or institution that has cared for me in the past.

With that disclaimer here is a little essay I wrote about my last surgery:

Despite living with a chronic illness for most of my life, I had never spent more than a few hours in a hospital room until the summer of 2005.  After I was rushed into the ER for an emergency surgery, I would experience my first hospital stay.  The following week at the hospital made me realize a new universal truth.  Hospitals Suck!

Upon arriving at the hospital in convulsions, with a 104-degree fever, I was promptly asked how I planned to pay for my stay.  I was reminded of how grateful I am that we live in a country where doctors don’t have to focus on treating their patients, but instead get to focus on new and creative ways to bill them.  After signing the required paperwork, effectively signing over all of my assets to the hospital, I was escorted to the waiting room.  Eventually they decided that I had waited long enough, and I was taken back to be treated.

Immediately upon reaching my room, a woman in a black evening gown began administering an IV.  A normal person might have questioned their sanity at that point.  However, at the time I just assumed that my treatment was considered a formal occasion.  Once the IV was hooked up, the Nurse gave me morphine for the pain.  This was awesome!  At this point since the pain was gone, I felt like I could go home.  However, they insisted upon more tests.  After a battery of dehumanizing tests, that I can only conclude were thought up by some diabolical lunatic; they concluded that a portion of my intestines were necrotic: this is doctor speak for “you’re going to die a very smelly death if we don’t operate immediately.”  Within hours I was in the operating room.

When I woke up after surgery I was certain that someone had made a mistake.  That much pain was definitely not natural.  I screamed for a nurse and demanded the most powerful pain medication available, to which she informed me that I had already been given the maximum dose of morphine.  As disappointing as this was, it did not match the shock of finding out that 18 inches of intestine had been forcefully removed from my body, along with a perfectly good appendix!  Why would they do that?  Well, it turns out, apparently I would have died if they didn’t, but it still seemed somewhat rude.

The following week of recovery was worse than the pain of surgery.  For a full week I wasn’t allowed to eat anything.  Meanwhile, the TV seemed to be programmed to only display the food network.  Family and friends would come visit and bring with them foods that I would have killed to be allowed to eat.  Eventually, the week passed and I was finally able to eat again.  This was the happiest moment of my life!  I could hardly contain my gluttony and eventually gained almost sixty pounds.  Of course that is a story for another day.

Following my experience in the hospital, I felt a profound need to stay as far away from that place as I could for the rest of my life.  I wonder if they do that on purpose.

Friday, June 12, 2009

Famous People with Crohn's Disease or Ulcerative Colitis

In my random browsing of the "interwebs" I have come across several lists of celebrities and other notable people who have Crohn's or Ulcerative Colitis. It is nice to know that we aren't limited in what we can do or where we can go in life. Also it makes for an entertaining read, to kill a few minutes while sitting on the can ;) ...

Here is a quick run-down:

Dwight D. Eisenhower - Former U.S. President.

Beth Orton - British Singer, Songwriter.

Anastacia - American Singer, Songwriter and Dancer.

Chris Conley - Singer for Saves the Day.

Marvin Bush - Son of former president George H. W. Bush and younger brother of former president George W. Bush.

Rolf Benirschke - NFL Placekicker.

Shannen Doherty - American Actress.

Kevin Dineen - NHL Player.

Shayne Corson - NHL Player.

Theoren Fleury - NHL Player.

Chris Gedney - NFL Player.

David Garrard - NFL Quarterback.

John F. Kennedy - Former U.S. President.

Al Geiberger - PGA Golfer.

Carrie Grant - British celebrity vocal coach.

Mike McCready - Lead guitarist for Pearl Jam.

Steve Redgrave - 5 time Olympic Gold Medalist.

Daryl Palumbo - Singer for Glassjaw.

John York - American Actor.

Mary Ann Mobley - Former Miss America.

Joe Rogan - American Comedian and Actor (host of Fear Factor).

George Steele - Professional Wrestler.

In case any of you want to check out my sources, here they are:

Monday, June 8, 2009

Riding a bike...

I just got back from a 5 mile bike ride with Wifey and I'm feeling pretty good. It is always nice to get out and get some exercise.

I have made an important mathematical discovery tonight: Crohn's + Spaghetti Dinner + Bike Ride = Explosive Bathroom Break!!!

Sunday, June 7, 2009

Biofeedback and Crohn's Disease

During the summer between my Junior and Senior year of high school I was in a small car accident. For a normal person this might not have been a very big deal; maybe a little whiplash and thats all. But a couple of years prior to this I had been diagnosed with Crohn's disease.

Unfortunately the stress from the accident caused my Crohn's to flare with a vengeance. Of course being a teenager at the time I knew everything ... so I decided that since medicine had failed me, I was going to ditch medicine. Thus began my [short] journey through the world of alternative treatments.

After some in depth [superficial] research into possible treatments I decided on Biofeedback. For those of you unfamiliar with Biofeedback, it is a non-medical process that involves measuring a patients bodily functions such as blood pressure, heart rate, skin temperature, sweat gland activity, and muscle tension, giving the information to the patient in real-time. This raises the patient's awareness and the possibility of conscious control of those functions.

I learned some very important lessons during this time in my life; Probably the most important is that Crohn's, at least for me, cannot be controlled without conventional treatments. However I also learned that Biofeedback can be a very helpful tool in managing Crohn's disease. There are times when I am in severe pain, or really have to use the restroom but have to wait, where the relaxation and breathing techniques have really helped me to cope. It is no replacement for conventional medicine, but it sure has helped over the years.

For anyone interested in learning more, here is a link to an article on Biofeedback by the Mayo Clinic:

Thursday, June 4, 2009

Welcome to Crohn's Voice

Welcome, this Blog is a chronicle of my ongoing experience with Crohn's. My goal is to provide a place where people can come to learn, vent or just gather some comfort from the fact that they aren't the only ones living with this "crappy" disease.
I was diagnosed with Crohn's in 1997 at the age of 14. Since then I have been on a plethora of medications including Prendisone, Imuran, Asacol and Remicade.
In June of 2005 I underwent surgery to remove 18 inches of necrotic intestine. Since then I have managed to put on a bit of weight for the first time since being diagnosed.
In the past couple of years I have learned that Crohn's is also causing inflammation in my Liver. This was a scary thing to learn but hopefully it doesn't progress into something worse.
I have a wonderful Wife and a loving Family who are very supportive and usually quite concerned about my health. I don't know what I would do without them.
Hopefully my thoughts and experience can help some of you who are suffering or have loved ones suffering from this awful disease. Feel free to comment and share your experiences as well.