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Crohn's Disease Forum » Tests for IBD » My bloods say i am fine calprotectin says your ill


09-24-2017, 08:16 AM   #1
cb123
 
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Location: ballymena, United Kingdom
My bloods say i am fine calprotectin says your ill

i have had ulcerative colitis for 5 years.It was first diagnosed because of blood in stool but i am sure was there many years previouly but not diagnosed.This was the only time i had blood in my stool and most of the time my bloods said i was ok or had slightly raised inflamatory markers.I was told by my doctor,consultant and ibd nurse it must be depression as the bloods were fine.Took anti depressants and had very unpleasant experience as i reacted to them.I persisted in asking questions why I had diahorea as this was not caused by depression and eventually the ibd suggested a calprotectin test Bingo reading of 1800.I would suggest to all those who have good bloods but have other symptoms such as extreme fatigue as i had to ask for the calprotectin test, Hope this helps others and ask any other questions if you need more help.I have lost many quality years of life because of poor diagnoses.

Last edited by cb123; 09-24-2017 at 08:49 AM.
09-24-2017, 08:26 AM   #2
ronroush7
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Hi. I am glad you finally got answers. Looking forward to hearing more from you.

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09-24-2017, 10:02 AM   #3
scottsma
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Hello cb and welcome to the forum.I too am glad you've at last got answers.1800 is quite a high calprotectin level but not as high as it could be.It does show inflammation, so what meds have you been prescribed ? Many folk on the forum have been fobbed off in the past, so I'm glad that you have a last got a result.
09-24-2017, 03:31 PM   #4
cb123
 
Join Date: Sep 2017
Location: ballymena, United Kingdom
i was subscribed 5 years ago different 5asa drugs . These made me go the toilet more frequently 12 times a day. I originally thought disease getting worse but when got off these i went to the toilet less often. Azathioprine was used ended up in hospital twice passing out on one occasion. and my white cell blood count went up to 30, it was decided I was allergic to azathioprine. For the next 5 years things drifted along using prednisolone on occasions until it was thought i was on them long enough. I went to see consultant and GP said i had diarrhoea and was tired. They said the bloods were ok so I couldn't have a lot of infection and infliximab was not justified.Really the calprotectine test should have been done earlier but i didn't know about it in spite of belonging to Crohn's and colitis society. Now they have decided it is urgently needed! I should say i was hard to diagnose blood in stool only once , no cramps and don't lose weight although would be nauseated in the morning and would force myself to eat.Its the fatigue that is the main problem I have to drive myself to do everything very wearying and difficult for others to live with me.
09-24-2017, 03:34 PM   #5
Guerrero
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Try focus on next steps now... this disease may be silent in blood tests unfortunately.
I'd consider biologics treatment in your case
09-24-2017, 03:37 PM   #6
ronroush7
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i was subscribed 5 years ago different 5asa drugs . These made me go the toilet more frequently 12 times a day. I originally thought disease getting worse but when got off these i went to the toilet less often. Azathioprine was used ended up in hospital twice passing out on one occasion. and my white cell blood count went up to 30, it was decided I was allergic to azathioprine. For the next 5 years things drifted along using prednisolone on occasions until it was thought i was on them long enough. I went to see consultant and GP said i had diarrhoea and was tired. They said the bloods were ok so I couldn't have a lot of infection and infliximab was not justified.Really the calprotectine test should have been done earlier but i didn't know about it in spite of belonging to Crohn's and colitis society. Now they have decided it is urgently needed! I should say i was hard to diagnose blood in stool only once , no cramps and don't lose weight although would be nauseated in the morning and would force myself to eat.Its the fatigue that is the main problem I have to drive myself to do everything very wearying and difficult for others to live with me.
Have you been tested to see if you are anemic?

09-25-2017, 02:46 PM   #7
cb123
 
Join Date: Sep 2017
Location: ballymena, United Kingdom
i am not anaemic as bloods are generally fine.I do take one iron capsule every other day as i think this helps and iron levels don't get too high.
10-29-2017, 03:33 PM   #8
cb123
 
Join Date: Sep 2017
Location: ballymena, United Kingdom
now on humira not as tired as i was but only on 3 weeks.
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