When IBD Symptoms Don't Match Lab Results

Isn’t it frustrating when you feel great but your lab results say otherwise?  In fact, despite how great you feel, according to your labs you are doing poorly medically.  It’s hard to believe it because your symptoms are manageable and you have more energy than usual. 

You would think this must translate into better test results, right?  But it doesn’t.  On paper, you are flaring and you need more medication to control it.

Confusing test results

Weirdly, how you feel in your body sometimes doesn’t correlate with the results of your labs.  And when this happens, it can be a colossal blow to the morale.

And what about the opposite case?  Have you ever felt like something was off, or that certain symptoms have increased and you don’t feel well but your lab work says otherwise?  You get a call from your doctor saying how pleased they are with your improvement yet you feel horribly? 

It can all be so confusing.

IBD symptoms despite normal labs

I am currently in one of these dilemmas.  My labs have been the best they have ever been since being diagnosed back in 2011.  My inflammation markers, although still high, are the lowest they have been since my diagnosis.  Iron, although still low, is the highest ever for me. 

Overall, bloodwork is pretty normal except for the iron deficiency anemia.  However, I don’t feel great.

As a matter of fact, I feel like I am slowly starting to regress into a flare and I am a bit concerned.  I don’t want to go back to where I used to be.  To being frail and unable to get out of bed.  I don’t want to be skinny again and struggle with eating due to the intense abdominal pain.  I don’t want to see blood in the toilet again or deal with endless diarrhea and numb legs from sitting on the loo for hours.  I don’t want to ever go back to that place.

Symptoms creeping in

Thankfully, for the last two years or so, I have been doing well in that I am able to function in the “Land of the Living”, which is comically what my gastroenterologist would say. 

This saying would always make me giggle because it was so true.  Meaning, although I still deal with symptoms, they are manageable and I am able to function in the real world.  Attend events.  Drive without a worry about having urgency.  Work and take on certain stress loads without being physically depleted.  Not have to spend morning hours in the bathroom.  Functioning.

But within this functioning state, I have noticed symptoms creeping back in.  Diarrhea occurring when it used to not.  Some blood here and there.  Fatigue creeping in.  Bowel movements becoming thinner.  Slight lack of appetite. 

Although my labs give me somewhat of a thumbs up, instinctively I know I need to get ahead of these symptoms before they erupt out of control. 

Next steps

In response, my doctor is upping the dose of my medication and we are for what feels like the millionth time, doing iron infusions to help with the anemia.

Although I have had these therapies done many times before, I remain hopeful that my body will respond the best this time around.  This is all we can do.  Remain hopeful.  Be our biggest cheerleaders.  Do all we can to improve and thrive.