Running with Crohn’s: What is Crohn’s Disease?

Running with Crohn’s Disease: What is Crohn’s Disease?

Contrary to my indications in my last entry, I elected to provide a short description of Crohn’s Disease for people who are unfamiliar with it.

Crohn’s Disease is an autoimmune disorder in which the body attacks its digestive tract.  The net result is ulcer like lesions that can occur anywhere in the digestive tract.  For me specifically, I have inflammation in my terminal ileum, which the tail end of the small intestine where it attaches to the large intestine.

IBD requires a variety of factors to start

The direct symptoms from which I suffer include anemia, abdominal cramping, night sweats, and diarrhea.  However, people with Crohn’s possess an increased chance of suffering from a variety of other issues.  I do not know the total list of these secondary issues, but I suffer from several of them.  These include kidney stones, fistulas and small bowel obstructions.

Small bowel obstructions feel like being stabbed in the intestines repeatedly with knives.  I have had obstructions for as little as a few hours and as long as 5 days.  In every instance, my body has cleared the obstruction naturally (through particularly nasty and long bouts of diarrhea and vomiting).  I experience the small bowel obstructions when I eat too much fiber particularly when I forget to chew carefully enough.  This means that I eat far less fiber than I should.  Of course eating very little fiber exacerbates my diarrhea problems.  Even so, I suffer from bowel obstructions from two-six times per year.

So far, I have suffered from two kidney stones.  The last one occurred in the spring of 2012 during the training for my first marathon.  I suffered from the first one in 2007.  My kidney stones presented differently.  My first one presented as blood in my urine, in fact, it actually turned my urine completely red.  My second stone presented as moderately severe back pain.  In both cases, I experienced severe pain during some point of the process (that was probably stone passing through my ureter).  The first stone passed with no intervention.  With the second stone, after two weeks, I contracted a fever of 102 F and they removed it surgically with “the Claw!”  This set me back by four to six weeks in my marathon training.

The following contains graphic details, biological functions, and very personal experiences:

I have suffered from three fistulas so far.  My first fistula happened about eight years ago in 2004.  It presented as a PITA (literally), swelling and tenderness near my rectum, and a systemic sense unwellness (as if I had an infection – which I did).  Ultimately, I had a very sharp pain near my rectum and a feeling of “gushing.”  What had happened is the fistula had “burst” open and left pus and blood in my underwear.  It took two surgeries to correct it.  The second fistula was not nearly as dramatic but just presented as blood and pus every time I had a bowel movement and required just a single surgery to fix.  The third fistula presented similar to the second fistula, however, I let this go on for nearly 6 months before I had a feeling of “bursting” with blood and pus left behind (nice pun, eh?) without a bowel movement. So far, it has required three surgeries (and might take more).  These surgeries interrupted the training for my second marathon and set me back many months.  Today (8/1/13), I have abandoned my goal of running my second marathon on 9/21/13, especially since I can only run about 6-10 miles right now. 

The worst part about diarrhea symptoms that I suffer from is its unpredictability.  I never know when I will suffer severe abdominal cramping and immense pressure in my bowels.  Having a bowel movement *usually* relieves this cramping and pressure (but not always).  So far, I have always been able to “hold” these bowel movements until able to get to a toilet.  It comes with a cost though.  I have to concentrate and squeeze quite hard to hold it in AND it usually hurts a lot.  I do have to say that I know I will need to have a bowel movement within 30 minutes of eating a large meal, however, this only accounts for about half the bowel movements that I have in a day.  I do not know how to predict the other times I need to go.

Similarly, my night-sweats are not easy to predict.  I get these two to six times a month.  My typical night sweat includes awaking in the middle of the night soaking wet – to the point of soaking any clothing I am wearing, soaking my sheets, and requiring a towel to dry.  In addition, I feel very cold.  I deal with this by wearing cotton clothing to bed.  When I awake soaking wet, I strip off the cotton clothes and go back to sleep in my underwear.

The intestinal cramping has been the easiest thing to deal with.  My earliest (and best) GI doctor prescribed both Levsin (Hyoscyamine) and Bentyl (Dicyclomine).  These work very well for me.  Bentyl works better but makes me drowsy.  Therefore, I use Levsin when I need to be alert but otherwise I use the Bentyl.

As I promised in my last entry, I will discuss the drugs I use in my next blog.