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Faecal Calprotectin >6000 (unrecordable)

(21 Posts)
lougle Mon 05-Mar-18 13:30:50

I've been having bowel symptoms with mucous, urgency, sometimes just mucous, sometimes orange, sometimes green, sometimes white, sometimes blood tinged, sometimes diarrhoea, sometimes constipated.

My doctor ran a FC test and referred me under the 2 week wait for a colonoscopy. The FC has come back as 'unrecordably high' (>6000). The GP said he imagines they'll find some sort of colitis during the colonoscopy. Does anybody have any experience of this?

Ottiva Wed 07-Mar-18 09:21:32

I didn't want to leave your post with no reply. I have Crohn's disease with high FC - I can't remember the result but not as high as yours.

It is good that you only have a short wait for the colonoscopy as it will likely give you answers / diagnosis

Best of luck. I was diagnosed last summer and being in limbo waiting for test results was horrible

lougle Wed 07-Mar-18 17:01:28

I have had my appointment letter and I'm booked for a flexible sigmoidoscopy. I understand the difference between the two procedures, as I'm a nurse, but is a flexi-sig enough to make the diagnosis? I presume it would be, or they'd go straight for a colonoscopy.

curragh Wed 07-Mar-18 18:47:59

Depends on where the inflammation is? At the time of my dx I had ileoceacal inflammation detected which would not have been seen in a flex-sig

If the flex-sig is clear will they proceed to a full colonoscopy, MRE or other tests?

StealingYourWiFi Wed 07-Mar-18 18:52:36

Crohns can be found anywhere in the large colon - and beyond actually! It's worth a full colonoscopy for Crohns. Colitis is generally in the lower part of the bowel. I would call the hospital as they book your procedure (sigmoidscopy vs colonoscopy) based on the referring letter details. As you've since had a change in presenting information with the high FC result I would call their bookings department or ask to speak with the secretary of the consultant you're under/IBD nurse and ask if they would rather do a colonoscopy instead of the siggy.

Hope all goes well smile

MollyHuaCha Thu 08-Mar-18 13:34:43

Good advice from Stealing.

Hope you feel better soon.

lougle Tue 13-Mar-18 12:51:45

I forgot to say that I did phone the booking secretary, and she said that everyone gets flexi-sig. Because I'm an ICU nurse, I tend to try to manage everyone/everything, so I said ok, and let it drop.

Today, I had my enema and went to clinic. The Dr said 'with your fecal Calprotectin result being so high, we have no choice but to do a full colonoscopy. I'd be saying that even if you weren't here. I can Flexi-sig you as well, if you want, as you're here and ready, but as colonoscopy views the same area, you may want to just wait for colonoscopy. The choice is yours.' It is an utter waste of resources to use his time, a Flexi-sig, reporting time, sterilisation time, etc., when I know he'll view the same portion of bowel with better prep using Picolax or Klean-prep.

So I'll get an urgent appointment (2-3 weeks) through the post for a colonoscopy at some point. It just would have been better if the booking secretary had been aware of the threshold for flexi-sig Vs colonoscopy. But it won't be her fault at all.

lougle Tue 13-Mar-18 12:52:17

Thanks for replying smile

Ottiva Tue 13-Mar-18 13:58:55

That seems crazy (waste of everyone's time & a precious appointment) but at least a colonoscopy will be more definitive and hopefully you won't have to wait long

lougle Tue 13-Mar-18 14:04:43

I know, it does. He said he has to view the whole bowel, right up to the terminal ileum. Totally understandable, but just a shame that they wasted a £160 appointment, when they could have used it for someone else.

Keepon123 Thu 12-Apr-18 20:00:45

Op just wondered if you had any update?as dp is currently facing similar investigations following symptoms and a high CP level.

rupertpenryswife Fri 13-Apr-18 20:06:18

keepon my DH was diagnosed with colitis after the exact same symptoms, is your dp booked in for a flexi sig? What were his fc levels?

Keepon123 Wed 18-Apr-18 12:16:32

rupert cp 1000, bloods normal,colonoscopy looked normal although awaiting biopsy results...still not sure what’s going on!

rupertpenryswife Wed 18-Apr-18 20:09:19

Oh did they give any idea of what else might be the cause, that FC is high although my DH goes between 150-1300 depending on the treatment.

Keepon123 Thu 19-Apr-18 14:32:32

They questioned coeliac but initial tests for that are all normal.awaiting gastroenterologist referral.thanks for your help

Goldrill Wed 09-May-18 23:34:41

Hope it's ok to add on to this. I went to the doctor a month or so ago with similar symptoms. I had to wait a couple of weeks to get blood taken and gave a sample at the same time.
Results came back from the stool sample and I am waiting for a phone consultation in ten days to find out what they are. In the meantime, I have had a referral to gastroenterology letter. I've booked the first appointment - for the end of June.

I'm just quite concerned about the time this is all taking. I'm assuming calprotectin level must have been high if I have a gastroenterology referral - and I am also assuming that as I clearly don't have an urgent referral they can't be thinking it is anything very serious. But then... nhs and all that - I am possibly being naively optimistic. ..?
I could try and get an urgent appointment with gp but would basically have to take a day off work. Which seems daft. But maybe I should.

Any thoughts really appreciated.

rupertpenryswife Thu 10-May-18 07:54:27

Morning Op is the telephone consultation with the GP? ten days does seem a long time to wait, it's hard to say what your results may be due to the wait, can I ask what your symptoms are? My DH waited about 6 weeks to see the hospital and he was really unwell.

If it was me I would push the GP to give the results quicker and if they are high the GP can make the referral urgent. Did the GP say what they thought might be wrong?

Goldrill Thu 10-May-18 19:12:17

Thanks for the reply. It will have been nearly three weeks since the results came in - that was the first appointment! The doctors in our city have all recently merged and the new booking system is great if it's really urgent but not so good for anything else.

Symptoms have reduced in the last week - I have mainly been eating porridge and toast for two months. Blood, gas, needing to go a dozen times a day, and then lots of mucous and not much else. And sore sections of abdomen. I've always had a lot of mouth ulcers but now have a fantastic crop.
As the stool sample clearly triggered the referral, my money's on ulcerative colitis. But I'm still hoping vaguely it's something temporary.

So I guess diagnosis is not urgent... it would be nice to get some treatment but I can live with it - particularly don't want to do the wrong thing.

Sorry - epic post!

Lsand Mon 05-Nov-18 10:45:46

Lougle hi , I have just had the exact same result as you and have the same symptoms just wondered what happened with you, did you get a diagnosis? Would really appreciate being able to talk to someone who is going through the same thing as me

Laura x

Lsand Mon 05-Nov-18 11:06:27

@Lougle

Lougle Mon 05-Nov-18 16:26:14

Hi, for me it turned out to be proctitis, which according to my Consultant is the 'best' IBD to have, if you have to have one. I've got a course of Pentasa, which should help.

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