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calprotectin levels and ibd

9 replies

mrsbrace · 18/07/2015 21:48

has anyone been through similar as feeling anxious and worried esp when i search calprotectin.
had diarrhea past 4 months 5-8 daily occasional aches lower right abdoman and lower right ribs
past few weeks feeling tired out after limited activity and joint aches in knees especially
all blood tests normal but calprotectin exceeded maximun 1800 so worried scheduled for colonoscopy but looking at another 6 weeks

OP posts:
gobbin · 19/07/2015 00:08

Loads of us on here with IBD so fire away with Qs.

Don't panic, get the investigations out of the way and if you get a diagnosis of IBD then there is loads of helpful info out there (e.g. Crohns and Colitis UK) and an array of medication to help get symptoms under control and keep you pain free.

mrsbrace · 19/07/2015 07:41

does the wait for a colonoscopy seem excessive given that there is obvious inflamation and surely this will just get worse?
is it normal to have a good day energy wise and no aching so you do more but then feel your paying for it by feeling tired? i feel like im becoming a recluse lol
just not sure how i can get things going quicker but know im getting anxious about the diagnosis and know i shouldnt but worrying as calprotectin can also indicate cancer. just want my life back feel like its on hold until i know whats causing symptoms

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accol · 19/07/2015 20:10

I've also just had a positive calprotectin test and am waiting on a colonoscopy. I'm finding that as my blood results are fine, no one is taking me seriously! I'm in so much pain and feel so rubbish.
6 weeks to them is nothing but when you feel so horrible, it feels like a lifetime doesn't it!

mrsbrace · 19/07/2015 21:04

definately! I had the referrel to see consultant back in may and appointment 6th july theres obviously inflamation due to the results cant help thinking that the longer im waiting potentially more damage could be done? have they said to you what next after colonoscopy, what they think etc?

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accol · 19/07/2015 21:17

I've been suffering since April and am now getting concerned about what damage may have been caused during this extra time.
I've been seen by so many different people and I think will have the colonoscopy before seeing a gastroenterologist again. It is all dependant on the results of that as to my next step. If it comes back clear, I don't know what I'll do!

mrsbrace · 19/07/2015 21:25

what was your calprotectin result ive only seen one consultant other than gp ? the consultant did say an mri and or endoscopy would be next if colonoscopy clear.

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accol · 19/07/2015 21:35

mine was only 189 but with other symptoms, is clear something is going on.
I've seen 9 gps, been admitted into hospital twice, seen a gastroenterologist and been to A&E. I was told last week that I need to be seen relatively quickly as it's been going on for so long.
I've had a clear endoscopy, if the colonoscopy is clear then they may seek a gynae opinion to check for endometriosis. After that it will be a CT scan.
I'm yet to find anything to help with the pain except oramorph.

mrsbrace · 19/07/2015 21:40

my symtoms started end of march fed up now hopefully not much longer for us both x

OP posts:
gobbin · 19/07/2015 23:09

The timescales you're talking about for the colonoscopy are pretty standard in my experience. As an example, I'm awaiting appts for MRI and colonoscopy following surgery and I'm expecting them in Aug. I saw the gastro on 8th July.

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