Deception

The body has an amazing way of compensating.  It's miraculous if you think about it.  We get a cut, our body heals itself.  We don't even have to think about "how" to heal.  It just happens.  All of the magical things fall right into place, like the platelets clumping together to stop bleeding.  For these platelets to even be produced, our bone marrow has to function adequately.  Then for the platelets to find their way to the site of injury, the heart has to pump so that they have a transportation system to get to where they need to be.  This is just one tiny example, of how well we are designed.

Another thing I find pretty crazy is how your body learns to compensate over time.  It does this to protect us from infection, injury, illness, and many other things.  This is good and bad, all at the same time.  Sometimes we are much sicker than we realize, but on the outside, we appear invincible.

Over the years, I have had hundreds of "spells".  I could go from feeling fine to being extremely dizzy and weak.  Sometimes these spells were accompanied by severe waves of nausea, and other times not.  The sharp pain in my lower right quadrant became expected twice a month, coinciding with the hormonal changes of my menstrual cycle.  Knowing I had a history of ovarian cysts, I chalked the pain up to these.  Based on my symptoms, it made sense to me.  The pain would sometimes knock me out for a day or two.  Tylenol did nothing, and I already knew that I could not take anti-inflammatory drugs because they upset my stomach.

My physician visits and frequent visits to the emergency room or "after hours" clinics turned up insignificant.  I often heard the same thing:  I was incredibly healthy, the perfect picture of health.  My heart was strong (a "runner's heart"), my blood pressure was perfect, so on and so forth.

So why is it that I would still go from feeling great, to on my knees from pain and nausea, in a matter of seconds?

Thankfully, I have a great primary care physician.  He is a fellow triathlete and friend.  He wasn't buying into the fact that I was perfectly healthy.  Nor was he buying into the idea that my abdominal pain was purely hormonal.  I was suddenly hearing the term "IBD" again for the first time since studying it in nursing school.

I was sent for a CT scan of my abdomen and pelvis.  I expected to hear the same results as I had many years ago:  fluid around the ovary, suggestive of a resolving cyst.  I did guess that this time, the cyst would be of significant size, because the pain was terrible.  I was also having one of my "spells".  I felt like I had the flu.  My body ached all over, but especially deep in my back.  I had been down this road many, many times, but this time seemed different.

When I got a phone call from my physician on a Friday evening at 5:30, I knew something was not right.  He was very direct in telling me that the scan showed some concern for Crohn's Disease.  I was to follow up on Tuesday with a Gastrointestinal physician who would further explore my case.  I found myself on Vicodin over the weekend for the extreme joint pain, and spent most of my time in bed.

I met with my "GI" doctor, without realizing it would be the beginning of a very long relationship with him.  I would soon find out that he pretty much held my health in his hands.  I would come to rely on his medical knowledge and decision-making skills, to secure my overall well-being.

I liked "Dr. A" right off the bat.  He was personable, young, well-educated, and seemed to be on top of his game.  After viewing my scans, he felt that the next step needed to be a colonoscopy so he could see what was going on inside of my intestines.  He was fairly confident that if I did have Crohn's Disease, it would be relatively mild.  I was the "picture of health".  I looked great, and not ill-appearing as many Crohn's patients tend to look.  I had done a Half-Ironman (and felt awesome during and after) just six weeks ago.  The post-race recovery was my best yet.  I was taking a little time off before beginning my Ironman training in January.

I left the appointment feeling indifferent.  Ready to feel better, but not so sure I really had a chronic illness.  I felt TOO GOOD to be sick.

A few days later (and a few strings pulled by my GI), I found myself preparing for the ever-so-lovely colonoscopy.  The procedure was fairly quick, and I was pretty groggy when I awoke.  My husband told me that the news was not good.  It appeared I did indeed have Crohn's Disease.  I was still in denial.  I was placed on high-dose Prednisone and Asacol while we waited for the final results.

Reality hit at my follow-up with Dr. A.  The news I would hear was like a tornado blowing through my mind.  I really don't remember much of what he said.  I just remember him showing me all of the pictures he had taken of my ravaged gut.  There were ulcers upon ulcers.  Classic Crohn's destruction throughout my intestines.  One area that he could not even get to because there was so much inflammation.  He suspected that I had a stricture (a narrowing of the intestine caused by inflammation and/or scar tissue).

"Seventy-five percent of Crohn's patients will need surgery within the first few years of diagnosis."
"This is an ugly, ugly, disease.  Your life is going to change."

I think my GI was about as shocked as I was with how bad things looked in my intestines.  He really had expected mild Crohn's disease.  People "like me" were not able to teach fitness classes, or do triathlons and compete at the level that I did.  I was supposed to be super sick and weak.

He concluded that I had been compensating for years.  I had gotten somewhat "used to" my symptoms.  Over time, I had developed an extremely high pain threshold.  In addition, being an endurance athlete had (and still does keep)  my symptoms under control for many years.  Endurance athletes in active training typically have suppressed immune systems.  Since part of the treatment for my autoimmune disorder is suppressing my immune system, I had been doing a good job on my own of keeping my symptoms to a minimum for years.  This is in part of why I continue to do extremely well in relationship to other Crohn's patients.  At least this is my theory!  I am currently researching more about endurance athletes who have autoimmune disorders.  There are only a handful of us with severe disease that do Ironman events, but so far what I am finding is that our quality of life and symptoms are significantly improved with exercise.

And so it began.  I was to become that patient I had studied about in nursing school years ago.  The patient who ended up in the hospital every few months with infection or obstruction.  The patient who inevitably ended up with a colostomy or ileostomy bag.  The patient many nurses were less than thrilled to take care of because these patients were known to be on TONS of medications.  They were known to be "hooked" on painkillers/narcotics for chronic pain, and most of the time they had leaky, nasty bags to empty.

Or WAIT.....I didn't have to become that person.  I didn't want to become that patient.  Even though I felt deceived by my own "strong" body, I KNEW I could depend on it as I always had.  I knew, without a doubt, that I would give living a normal, healthy life my very best shot.

I had been in training for years.  Always racing, always staying on top of my game, always getting stronger and faster. Why stop now when I am up against the greatest health challenge (so far) in my life? To me, the answer was/is simple:  I WON'T stop now.  I have too much to lose.  I will remain strong and continue preparing my body/temple to fight the battle within.  My boys are counting on me!