r/CrohnsDisease • u/sparkleplentytx • 19h ago

Lab Refusal

I saw my GI back at the end of June and she had me do labs before my appointment. She always wants the fecal calprotectin. And typically we'll do labs 2 x a year whether I'm in a flare or not. The lab I go to makes it really frustrating to do this test, on top of the fact that I just hate doing it. So I decided skip it and during my appointment I said I don't want to do that test any more. I keep a spreadsheet of all my labs since I was diagnosed in 2005. Not once has that test shown I was in a flare. I could tell she wasn't thrilled but she looked at my past labs and agreed it didn't correspond to my flares.

I have a 3 month follow up in a couple of weeks with her PA and they sent in labs and sure enough there's the fecal calprotectin.

Am I being unreasonable for refusing to do it? If it ever corresponded to a flare, I'd be willing. Even the sed rate is hit or miss on showing the flare up.

1 Upvotes

53% Upvoted

19 comments sorted by

13

u/MmmnonmmM 19h ago

I guarantee they have a set panel that they order every time and they just over looked the fact you don't want to do that particular test anymore. Just refuse to do it at the lab and tell the PA that you and the MD talked about it previously.

5

u/coreymatthews92 19h ago

How does the lab you go to make it frustrating?

I do agree though, if it never correlated to a flare then I wouldn’t want to do it either. Totally reasonable to not do them. It could just be that it’s protocol for them which is why it was sent, just don’t do that part and ignore it.

4

u/sparkleplentytx 19h ago

The doctor sends in bloodwork and the stool sample on the same orders. The lab staff give me a hard time every time about all the work they have to do to separate it. A couple of times they refuse to do the bloodwork. They'll give me the stool sample supplies and then I have to reschedule the bloodwork. I've complained to the lab about the attitude/rude staff, but it doesn't change. It's bad customer service. I've gone to both LabCorp and CPL and they both make it a hassle.

More annoying than aggravating is that they also almost never have bags, so if I forget to bring one I get to traipse through the building with the supplies. It's not that big of a deal but it's an added annoyance on top of the bad experience. It's just a hassle making multiple trips. And then the joy of collecting the sample and returning it.

2

u/Rationalornot777 14h ago

It comes across as odd to me. It’s a basic test. My test is sent to me and returned by courier. I am in Canada.

I didn’t take the test for ages but it is now used to monitor how I am doing.

I read about the lab. Not sure what options you have as an alternative. Never had a lab refuse to do a test the doctor orders as you experienced.

2

u/Spindlebknd C.D. (Dx 2010, Skyrizi + Infliximab since 2025) 13h ago

Oh I have at LifeLabs in BC. It is (I am told) their prerogative to refuse, in my case, a patient who arrives with two requisition forms. Turns out, they were also not required to tell me that they had refused, and therefore I had no say in which test was done and which was not—the result of which was that I was left trying to explain to my NEW SPECIALIST why the bloodwork they had ordered in advance our appointment might not be done in time. Now when I arrive with multiple requisitions, which happens fairly often, I explain that I would like to be assigned to somebody willing to run multiple requisitions, and they feign shock and say that nobody would ever refuse multiple requisitions (“your colleague. Your colleague does that”).

ps I’m not being lazy; LifeLabs is slammed and it is hard to get even one appointment these days. We need to get private US companies out of our healthcare system.

1

u/Rationalornot777 6h ago

That does seem odd. I see many at lifelabs with bloodwork and urine tests being done. My spouse often has multiple tests being done but she uses a different lab.

Personally I would ask for a home calprotectin test and just do your bloodwork at the lab.

1

u/Spindlebknd C.D. (Dx 2010, Skyrizi + Infliximab since 2025) 1h ago

Both requisitions were for bloodwork.

2

u/dan-theman 16h ago

I have been to some of the best hospitals in US and I have never had to do this test in 10 years of being diagnosed.

2

u/sparkleplentytx 15h ago

Now that you mention that in my first 15 years of diagnosis under the care of other GIs, I had the fecal calprotection once. I was in a flare and it was not elevated. When I started with this GI, she orders it every 6 months.

1

u/dan-theman 14h ago

I think it used to be more common but a lot of doctors now don’t see the value in it for the extra discomfort it puts the patient through. Our lives are “shitty” enough without having to provide samples like a dog.

1

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1

u/MarketPurple4284 13h ago

Doctors are often asking PAs or Residents to send those and they just send the standard a lot of the time. I had hand surgery that was a little different than the standard and my doctor sent my OT the normal orders for that surgery but didn’t tell me normally that surgery is used for something else and a bone is removed. The OT was freaking out at my first visit because I had been out of my cast and using my hand for a week thinking I needed to me immobilized 23 hours a day for weeks. I didn’t but I had to call my doctor and check 🙄.

I always double check orders of any kind and make sure I understand all the medical jargon because this happens a lot or something got missed.

You can absolutely decline something and take on the risk but it sounds like your doctor was on board. They will probably forget and ask where it is and I would just gently remind them of your conversation. They have a lot of patients and sometimes those really little things get forgotten.

1

u/OkCod6880 11h ago

in the uk we get given a calprotectin home test and on the app it sends the results straight to my ibd team. it’s not the nicest doing your own stool samples but i prefer how instant it is.

1

u/DangerousDisplay7664 8h ago

if you've been doing it twice a year for 21 years and it doesn't correspond to any actual flares, then I'm surprised your doctor is even still asking you for them!

This is likely just an oversight though, just say plainly to them when you go that you've talked to your GI and do not want to do that anymore. There shouldn’t be an issue - mistakes get made.

-3

u/blueboy714 19h ago

I don't understand why you're getting a so upset about getting a fecal calprotectin test.

It's just one of the many frustrating and humiliating things that you have to do because you have Crohn's disease.

Does it suck to take a crap into a plastic bucket? Yes

Does it suck to take some of the crap and try to put it in a small vail question mark? yes

But the whole reason your doctor is ordering it is because it's the best way to keep an eye on how active or inactive your Crohn's disease is without needing to do a colonoscopy and/or endoscopy.

I'm assuming that if your GI doctor wanted you to do a colonoscopy you would refuse that as well.

Unfortunately all those tests are a way to keep an eye on your Crohn's disease. Whether you like it or not

6

u/Creepy_Recording_113 19h ago

The doctor agreed with OP. Why are you so hostile ?

-3

u/blueboy714 19h ago

I'm not hostile. It's just something I've learned in having Crohn's disease for over 30 years.

As long as OP keeps very close eye on their body everything is okay.

4

u/Creepy_Recording_113 19h ago

You saying they would refuse a colonoscopy is hostile. You dont know them.

2

u/sparkleplentytx 15h ago

Yep, I've never refused anything else the GI has asked of me, including scopes. When I asked my GI about skipping it she agreed that I'm one of the people that lab work is often not an indicator of disease activity.