First post ever - calprotectin levels 2000+, no symptoms

Hello! This board has been incredibly helpful for me.

Diagnosed with colitis in May 2012.

In March 2016 I was switched from Asacol to Mezavant (Canadian Lialda), and was told to take VSL#3 (I take that or Visbiome, whichever is cheaper). My calprotectin scores were never good, and while I was pretty healthy, I usually had a flare around Christmas.

Since March 2016 I've been FANTASTIC. No flares, no symptoms. Maybe an off day here and there, but I eat like a teenager (I'm 42). I've been going to the gym 3 times a week for just over 3 years. I could paint portraits of my beautiful excretions. I sing ballads in their honour.

Out of about 7 calprotectin tests, I've tested between 1800-2400 for all but one. I thought I solved the issue by eliminating aspirin and Advil (NSAIDS) and finally passed one (240!) , but I just got the results from my last test... Back to 2100.

I suspect that this may have something to do with the ease and amount of sample I produce. I have some ...test anxiety? And maybe I should wait for the highest quality sample? I usually produce some, then stop and collect and then do my usual full release. Am I messing up?

(Oh, and I'm beyond phobic of needles and also colonoscopies. I understand that it's the thing to do, but my initial diagnosis required a 25 day hospital stay and anti psychotics to get near me with a needle. I went for therapy, I couldn't bring myself to do the work, and so no, no testing unless I provide what is needed.)

It just seems like the better I feel, and the fewer symptoms I have, the worse my test is. I've passed 3 in 5 years! Out of around 20+

Thanks for any guidance.

If you have no inflammation, the fecal test may not be a valid test for you. IF you do, your symptoms do not reflect it.

Sadly your phobia will make treatment very difficult. It is ideal to triangulate with multiple tests. Getting inflammation markers in blood, getting visual and histological measures.

If you reason that good symptoms likely means no inflammation, and do not mind possibly living with elevated risk of colon cancer, then don't act on the possibly invalid fecal levels.

If there is any family history of CRC, I would be more cautious.

good luck

iPoop said...
I guess that leaves you with going by symptoms only (how are your symptoms: bms per day, urgency?)

Alternatively there is pill cams instead of colonoscopies. Alternatively there is xrays with barium enemas.

In a flare I'd be in the bathroom every 10-30 minutes overnight, and unstoppable urgency a few times during the day. For the past 18 months I go 3-4 times a day, sometimes only because I'm afraid to go out for a long time or before the gym as a precaution. If I'm just hanging around on a weekend, it's more like 2. Urgency only when I get up in the morning, but I can hold off for 15-20 minutes while I deal with my needy cat.

There are no visible signs of anything at all abnormal, although I don't dig or anything. Everything looks and smells like I'm a kid again.

I know about the pill cams. My province pretty much outlawed private clinics who used to do that, as does the next nearest province. Our hospitals are old school. I can ask about the X-ray... I'm also notoriously squeamish about sticking anything up that end of myself. I'm not much of an explorer.

DBwithUC said...
If there is any family history of CRC, I would be more cautious.

Nope. My mom just got diagnosed with a different kind of colitis (she throws up mostly), but all my grandparents made it to an average age of 90, no cancer. One second cousin had breast cancer, but not a single other person.

I did take aspirin/caffeine/codeine OTC painkillers 2 weeks before (Tylenol doesn't work for me) but the pharmacist said it'd be out of my system in a week. I did the test on September 7, and I seem to have had a stomach bug for about a week from the 18th-24th. I had thought it was a flare, but just off colour pale diarrhea for my usual 3-4 times a day, no urgency, no blood, no mucous, but pain after going. I've been back to my usual self the past 2 days. I asked for a retest. Both the gastro and the gp think I look healthier than they've ever seen me. This is driving me crazy.

Thank you all for your reassurances and advice. I know I'm hard to deal with, but I have learned so much lurking on these boards that doesn't show up in research or get conveyed by doctors.

My son has had consistently high calprotectin levels with no symptoms, I recently started him on high strength fish oil and turmeric and his latest calprotectin level is 108 which is the lowest it's ever been, might be worth a try? High strength probiotics like vsl3 sent his levels through the roof

Jaye514 said...
One of the side effects of Mezavant is supposedly inflammation (I just read that on a British drug site)? How on Earth is anyone supposed to find something that works if the medications and supplements they take to get better are secretly making them (look) sick? I'd be the poster child for successful treatment...as long as no one looked too closely.

What they are referring to is this. about 5% of patients taking medications containing mesalamine experience an intolerance or allergic reaction to it. That reaction is a dramatic worsening of UC symptoms. So, yes, mezavant can cause diarrhea, inflammation, and so on but only when an allergic reaction occurs. And the odds are against it. By the word "dramatic" is key, like going from 2 formed bms a day without urgency to suddenly 6-8 bms a day all loose and very urgent.

You seem to have a number of medical phobias so I'd be careful in overanalyzing everything as it's only going to stoke the fire under those fears. The improbable are just that, and fears make us assume that everything bad will certainly happen to us regardless of the actual odds... not helpful.

Thank you to everyone!

Here is a follow-up:

I did seem to flare mildly shortly after my post. No increase in frequency, and other than loose/unformed stools, no other symptoms.

I went up to two full packets of VSL#3/Visbiome. Tried the fish oil pills. I was doing fine by the end of October. can

In November I added one (legal in Canada) Mutaflor pill just to try to get to 100% from 90%.

December test =1250 (didn't feel it was worth posting)

I stopped the fish oil and went back down to 1.5 packets of VSL/Visbiome. Maintained the Mutaflor because now I only go to the bathroom once or twice a day, down from 3 or 4. Changed my turmeric to a supposedly more potetent turmeric (with root and peperine).

Just got my April test. 74. That's all. Seventy four. A new record. (Assuming they didn't make a mistake).

I've never had consistently low results twice in a row, and I do everything I can to get a favourable result in the weeks before a test. The same everything.

So right now, the Mutaflor is the big new addition. I'll update with the next test in August.

I completely forgot to update!

(Three months on the Mutaflor)
April 2018 my calprotectin was 74

I had a minor flare for next three months right after that. Added more fibre, more vsl#3, more Mutaflor...anything to control it. It wasn't bad. Maybe it was IBS.

Once that cleared, I did my next test at the end of August. 232. Amazing.

Another 2 month flare from October through December. This one had me nervous, it just kept getting worse and worse. I tried a black cumin seed oil supplement plus every trick in the book (except CBD...but I was getting *really* close to starting.). I suspect two weeks of barely eating because of a bad cold helped... I ate nothing that had any flavour.

January's (2019) results just came in. 105.

That's 3 in a row.

So worst year ever for flares (although more bearable than they used to be...all the terrifying symptoms, but minimal urgency) and best year ever for inflammation.

I will never understand how this works.

They really had to give you anti-psychotics to give you needles and a scope?! Not just anxiety meds like Xanax? That's crazy. I have a lot of anxiety, too, but luckily not regarding needles or medical stuff. I am severely claustrophobic though. I also have a needy cat! Ha. I'm glad your symptoms aren't too bad and you seem to be doing fairly well.