Monthly Archives: December 2011

As a moving homage to Redneck Comedian Jeff Foxworthy and to Crohn’s Disease patients around the world: “You know you are a Crohnie when….”

You set the dinner table with a knife & fork but all you’re “eating” is “Ensure.”

All you own is Black underwear.

The glove compartment AND the trunk of your car has Imodium in it.

You are less embarrassed buying Enemas at the Pharmacy than Condoms.

You look forward to hospitalizations because there you can fart with impunity.

During the Holiday Season, people get you Gift Certificates to your favorite Pharmacy.

You must own an industrial strength “Snake” because no Plunger can free your Home Toilet of the occasional large “log.”

You are watching TV with your Mom and both of you have your own respective Air Freshener Sprays.

Said Air Freshener Sprays are BOTH aimed at YOU, ready to spray, “with the safety off.”

What is a Crohnie?

A Crohnie is a person with Crohn’s Disease.  However, given the similarities in the hassles, challenges, health insurance codes and the often excruciating pain associated with Ulcerative Colitis (“UC”), Irritable Bowel Syndrome (“IBS”), Colitis and the “catch-all” Inflammatory Bowel Disease (“IBD”), Crohnies view UCers, IBS, IBD and Colitis folks as much respected Brethren.  To the Crohnie, each is like a “Brother from another Mother” and therefore the term “Crohnie” includes them.

 What is Crohn’s Disease?

Crohn’s disease is a type of inflammatory bowel disease (i.e., the digestive tract) that affects approximately 700,000 Americans.  It is a broad spectrum disease such that different patients can have completely different experiences in terms of degree of pain, need for hospitalization, the foods which trigger flare-ups, effective medications or other treatments, etc.  For me, at the age of Forty-Eight (48), it has included Two Hundred Plus (200+) hospitalizations and approximately Fifteen (15) to Twenty (20) surgeries.  But for one of my close relatives similarly diagnosed, it has been no more than a minor inconvenience with no hospital visits and no surgeries.   If only my family had money and it was distributed so disproportionately….

It is an incurable auto-immune disease whose most successful treatments suppress patients’ immune systems and thus leaves them vulnerable to numerous other conditions.  It’s like going on a blind date and instantly realizing how un-attracted you are to your date but then you also discover he’s a selfish, ill-mannered ego maniac.  It is a Lose-Lose situation.  The auto-immune component often causes Crohn’s patients to have exponentially longer “healing times” in response to common infections and it can cause abnormally more intense, debilitating or merely longer-lasting responses to minor health issues such as seasonal allergies.  Accordingly, Prostatitis for me may last several weeks while my buddies simply take prescribed antibiotics and start urinating full-stream in no time.

Crohn’s disease can affect any area of the GI tract, i.e., from the mouth to the anus, and the swelling extends deep into the lining of the affected area.  This causes a “narrowing” of the necessary passageway for food, gas and stool. As a result, the swelling can cause severe pain and can make the intestines empty frequently, resulting in diarrhea; or not at all, when the body’s natural process of peristalsis forces downward “movement” inside the intestine and then severe child labor pain-like feelings can set in along with the risk of perforation of the intestine. This severe child labor-like pain and possible perforation of the intestine could be indicative of a life-threatening situation and then the Crohn’s disease patient must go to a hospital.

Because the symptoms of Crohn’s disease are similar to other intestinal disorders, such as IBS and UC, it can be difficult to diagnose.  Unlike UC and IBS, however, Crohn’s disease can involve all layers of the intestine, such that normal healthy bowel can be found between sections of diseased bowel.  These are sometimes referred to as “Skip Areas.” In addition to the fact that Crohn’s disease frequently recurs, and in some cases can also be quite aggressive, Skip Areas are one of the primary reasons why operating to remove diseased portions of bowel is very difficult, and unless presented with emergent circumstances, not a preferred option.  All that said, it makes you really appreciate a normal bowel movement.  Is that what they meant when they said, “Don’t forget to stop and smell the roses?”

Treatment for Crohn’s Disease

Treatment may include drugs, nutrition supplements, surgery, or a combination of these options. There is also a rise in the successful use of organic foods and homeopathic supplements to combat and/or decrease the number and frequency of Crohn’s flare-ups but these pioneering efforts have not been proven scientifically safe and effective and they tend to be extreme and difficult to implement within a normal lifestyle without actually living INSIDE of a Whole Foods Market.  In any event, the goals of treatment are to control inflammation, correct nutritional deficiencies, and relieve symptoms like severe abdominal pain, diarrhea and surgical complications, and to also treat side effects from the various forms of successful Crohn’s treatments.  So, the objective of successful Crohn’s disease Treatments is to treat the serious and frequently debilitating side effects of the fabulous aforementioned successful Crohn’s treatments.  Did Abbott and Costello invent Crohn’s disease?

A stark example of this Abbott and Costello effect of the different successful Crohn’s disease treatments is what I am presently living through in that my Crohn’s disease was successfully treated for a few years (i.e., I experienced very few flare-ups) with what is referred to as an Anti-TNF Agent Drug (namely, “Humira”) but then I started to develop recurrent Pneumonia and other respiratory problems which were so serious that they required several hospitalizations.  Eventually I underwent lung surgery for the doctors to obtain lung biopsies and then I was diagnosed with “Bronchiolitis Obliterans Organizing Pneumonia” (a/k/a “BOOP”), a rare and potentially lethal Lung Condition.  (When I first heard the diagnosis I thought they had me confused with a dinosaur character from “The Flintstones”!) The “textbook treatment” for BOOP was one (1) year of a very high daily dosage of Prednisone (i.e., 60 MGs) eventually tapered down appropriately over said year.  However, after three (3) months or so, and about 45 extra pounds and one almost psychotic disposition, it was clear my body did not respond as was hoped to the massive amounts of Prednisone so I underwent a form of Chemotherapy with the drug “Cytoxan.” After three (3) monthly infusions of Cytoxan, my lungs apparently significantly improved (although it is unclear if the BOOP will be chronic and therefore come back in the future) but now my Crohn’s disease seems to have been aggravated by the Chemotherapy.  To that end, I am seeking treatment for such severe abdominal pain that I cannot eat solid foods without the subsequent digestive process literally bringing me to my knees crying from the pain.  I live on Lollipops and Liquids.

Given the current state of Crohn’s disease research, treatment for it can help control the disease by lowering the number of times a person experiences a recurrence or flare-up, but there is no cure. Some people have long periods of remission, sometimes even years, when they are free of symptoms. However, the disease usually recurs at various times over a person’s lifetime and predicting when a remission may occur or when symptoms will return is not possible.

Sometimes this frustrating research reality sounds to me like someone was given a great deal of Research Grant Money and after an extensive three (3) year study, they concluded: “We think the Butler did it, but then again, it could be Colonel Mustard, in the Kitchen, with the Fireplace Poker. We need more time and then we’ll get back to you.”  In all seriousness, Crohn’s disease can impact a person in so many ways including physically, medically, mentally, emotionally, professionally, financially and socially.  I kid the Researchers but I sincerely appreciate their efforts and dedication and I pray for their success.

**Much of the above medical information regarding Crohn’s disease has been obtained from the National Digestive Diseases Information Clearinghouse. The sarcastic commentary is all mine.

“You know you are a Crohnie when….”

You bring your own pillow to the Hospital.

You experience euphoria at a rock concert after silently passing potent gas, estimating its invisible travel time into the different seating sections, and then merely by facial expressions, seeing a section of people affected, one by one.

You can discern between different Air Freshener Sprays to obtain the most powerful one.

You become an expert of the potency of the different brands and scents of Air Fresheners.

Your abdomen sometimes feels like you’ve been trapped underneath an earthquake-ravaged building and all of the weight is on your torso.

No matter how many times you tell people that you are not feeling well or that you are going through a Crohn’s flare-up they always respond, “But you look great!”

You run into an old friend while purchasing Stool Softeners or Laxatives and you attribute the purchase to your kind, harmless Mom because, after all, “she is getting on in her years and ….”

You tell someone you have “Crohn’s Disease” and they ask if it is contagious.

You tell someone you have “Crohn’s Disease” and they ask, “Is that ‘the Bathroom Disease?’”

You actually understand your Health Insurance policy.

Your mail is mostly comprised of Medical Bills, Explanation of Benefits (“EOBs”) forms from your Health Insurer and Dunning Notices regarding said Medical Bills.

You hand out Holiday Gifts to the Office Staffs of your various doctors for simply doing their jobs so you are in their good graces going forward.

You prefer certain flavors of Barium over others.

During a Flare-up, your joints, fingers and toes feel like Voodoo Dolls randomly pricked by a painful needle controlled by your main nemesis from high school or summer camp.

You sometimes get gas that’s so powerful it literally starts to lift your butt off the toilet bowl when you expel it.

You know to shave both arms for the intravenous lines before being admitted to the hospital.

You’ve taken Prednisone and have not been committed to a mental institution.

You’ve taken Prednisone and at one time or another have been told by friends or loved ones that you need to be committed to a mental institution.