The battles of submitting your fecal calprotectin test
When I was diagnosed with Ulcerative Colitis almost 8 months ago now, I met my GI for the first time. She and her team were the ones to perform the colonoscopy that would reveal my diagnosis as well as the particulars about the severity of the disease. I was later to meet with her in her office and go over the long term plans. Like many colitis patients, I had some trial and error in finding the medication that was right for me. A high proportion of colitis patients are still struggling to find the right medications for them, and it takes years for any one of us to finally get into remission (if ever). I am still waiting for that day.
If you are new to IBS or IBD you will soon discover that a lot is unknown about these gut-related diseases. While IBD involves physical ulcers in the colon, and IBS has a neurological component, the similarities between the two diseases tend to be more nutrition and supplement related. The former, however, involves an inflammatory component as the ulcers bleed into the gut and can cause tremendous pain and discomfort along with the diarrhea.
Introduction: The disease brings about a mix of symptoms like bloating, diarrhea, fatigue, dehydration; as well as systemic and invisible symptoms such as inflammation. Patients are usually on their own when it comes to managing their symptoms above and beyond that which is relieved through their treatments but the primary goal of the right medication is to reduce the inflammation; the primary indication of ‘health’ that can be carefully monitored and understood by your GI. Your GI will routinely order a fecal calprotectin test which is a poop test to screen for inflammation, or rather, a particular biomarker in the gut (and thus carried into your bowel movement). At the beginning this test is used to help determine the right management program/treatment to reduce the inflammation. Secondarily, the test can then be used as an assessment tool to determine – if on biologic treatment – how regularly the infusions need to be administered to help maintain stasis (ie tolerable side effects and low/no inflammation).
The Test: Depending on where you live, you either need to take a requisition to a clinic to pick up the collection device, or one may be ordered to your house directly. In the kit you should have one container (with our without a stabilization buffer), a toilet bowl collector for you to catch your bowel movement, a tool to scoop part of your bowel movement into the container (sometimes this is connected to the lid of the container and sometimes it is separate) and an ice pack to freeze 24 hours before collection. It comes in a nicely packaged box, and nothing too complicated about it. Here’s the problem though.
So you get this kit home, and you lay out all the parts, waiting to have a bowel movement but, you gotta remember to freeze the ice pack for 24 hours (or so) before you can start the process. Fair. Alright the next day you lay everything out again, stick the collector on the toilet bowl and finally have some success. The kit doesn’t really tell you how much sample to put in so there’s a bit of a handling struggle there, trying to plug your nose, turn off your brain and scoop your own poop (endlessly) into this container. You close it up, write your name on the sticker, stick it to the container, and place it in the foil bag along with the ice pack. The whole thing then goes into a shipping bag and you call the courier to pick up the package. Here’s the kicker – the biomarker is only stable if it is ‘frozen’ (ie sitting next to the ice block) and must be shipped to the lab the same day! Now you have to wait for the courier to pick up your sample and of course you’re given a random 4 hour window, so no hope in heck you’re going to work that day. The courier comes, helps you fill out the paper work and gets on his/her way. Done.
There’s more: More often than not, the sample doesn’t arrive on time or is sent to the wrong address and the whole thing needs to be redone. That means the lab has to call your GI for a new requisition, and your doctor calls you saying you need to be more compliant. I definitely speak from experience here, but I know and can attest to many many others who have experienced this very process. Not to mention that some states/provinces have health care coverage for these tests but the majority of us pay out of pocket each time. In canada this test costs roughly $130 CAD. Lastly, I don’t need more excuses for taking days off work. Us UC’ers are already on thin ice with sick days. In fact us UC’ers have enough to worry about than to chase down our poop samples.
There are other biomarkers that are more stable at room temperature which may provide more wiggle room on how long you have to ship the sample. But those markers may not be as reliable as calprotectin (say, lactoferrin for instance, but this comparison is currently being evaluated).
So how do we close this loop? How do we get the results to our doctors in a reliable, timely fashion so that they have the tools they need to assess our colon health and can make informed decision on our health care?
Some hope: Recently I came across a very interesting development for the calprotectin test. A company by the name of Buhlmann – A Swiss company known for their Calprotectin ELISA assay – has developed an at-home collection kit that can be done in the comfort of your own home, on your unique bowel movement schedule, without the need for shipping or lab processing. To learn more, watch this instructional video.
As a patient I am inherently sceptical of new technologies and large companies, but the more I look into this test the more I see a sincere need for this technology. Many GIs, including some very renowned ones here in Canada, have been actively validation this product in hopes to implement this tool into the medical system to derive higher compliance and patient outcomes.
Preliminary results have shown that the test is easy to use, comprehensive, and quick. The results from the fecal tube are registered on the IBDoc app, and then sent immediately to your doctor’s portal where the results can be read and acted upon with quick turnaround. To read more on this test, see the links below.
https://www.buhlmannlabs.ch/products-solutions/gastroenterology/ibdoc/
Disclaimer: I have no affiliation with Buhlmann but 1) do work at a private company that offers calprotectin testing and 2) I have personally experienced all the trials and tribulations listed above. Seeing the issues from both sides I would love to see improvement on patient experience and reliable testing methods to benefit the patient.
References:
P134 Home based faecal calprotectin testing: a Canadian user performance evaluation study of IBDoc®
N804 An evaluation of patient satisfaction with IBDoc calprotectin home test system
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