Hi having the  same problem but my fc calprotectin is 869 and i am v.worried any advice suspected IBD as well

Hi Anna

im in roughly the same area as you, I've been having bowel issues for around 3 years and had a sigmoidoscopy and ct colonoscopy in that time with normal results. Originally I had a calprotectin test which was within normal range at 48 but just after Christmas had a terrible bout of watery diarrhea that even loperamide didn't treat. Had another calprotectin test and the result has really shocked me at 860 so I've been referred for an urgent colonoscopy next week. I feel like I'm in turmoil and never been so scared. I'm 50 but I'm terrified of the results. 
 

David 

Hi David, I hope you have now had your referral and got some answers.
 

My faecal calprotectin level is 1800.  I have had Crohn's disease for 20 years. (I am now 57) I had been in remission with meds (Pentasa) for quite a few years but despite increasing these recently am now in full flare and back on prednisolone. The steroids aren't fully controlling my symptoms and having to shield because of COVID-19 as classed as high on the vulnerable list due to the meds. Hoping for the vaccine soon and that I can get off the steroids.

If you or anyone else has any questions relating to IBD please feel to ask me.

Anyone know what a 3305 calprotectin may mean, it kinda shocked me how high it was today. I hope everyone has got answers and the Colonoscopies are not as bad as they sound. 

All the best. 

Jem 

Good Afternoon, 

I had a second Calprotection test done recently and it was over 3000 but it seems odd as I really don't have any pain or if any symptoms of IBD. I am wondering if the test result is wrong because the first result was only borderline at 173.  I have a Colonoscopy booked in March and I am really anxious, I feel like they aren't going to find anything to be honest it's all been a bit strange!.

Any words of comfort or advice would be appreciated :) 

Jem 

Hello everyone. 
 

I am slightly worried my calprotectin levels are about 650 and I  am booked in for a colonoscopy, but i am only 19. I'm scared as the doctors think it's a form of IBD, and also I'm scared for the colonoscopy. 
please feel free to drop any advice. Thank you 

Hi

im going through the same thing , have you had your colonoscopy? Thank you 

Hello

no not yet i rang the hospital after i got my referral from the doctors and they said the waiting list is quite long and that they would contact me as to when i can get booked it. It's such a long wait not knowing. 

Still waiting for my colonoscopy date to come through. It will be 2 weeks on Wednesday since I saw my gastroenterologist, was kind of hoping that I would of had a date by now, especially considering that my gastro put this through as an urgent.

On the positive side, my mri date came through and that's on the 12th April. Though I'm not entirely sure what an mri is going to show in regards to crohns/IBD.

My calprotectin level of 5200 is just playing on my mind so much. The waiting is almost unbearable : ( 

What's your symptoms guys? 

Hi I have just had a stool sample and it has come back abnormal calprotectin I have to repeat stool sample in two weeks. I don't know what level the calprotectin is as I only got a text of doctor's to repeat test in 2 weeks so I am worried. I will be doing repeat test next Friday any advice would be appreciated.

Ness49

Hi Jackie like you my calprotectin level is 1800, I'm told that's the cutoff point so it can be higher, mines never been low I don't think but I only have it tested in a UC fllare.

I am starting cortiment Tomorrow have you ever taken it.

My first time on oral meds and a bit apprehensive. 

You ok now as I see this is way back in February 

Take care 

Hi Jackie like you my calprotectin level is 1800, I'm told that's the cutoff point so it can be higher, mines never been low I don't think but I only have it tested in a UC fllare.

I am starting cortiment Tomorrow have you ever taken it.

My first time on oral meds and a bit apprehensive. 

You ok now as I see this is way back in February 

Take care 

Hi sorry for late reply I had issues with the site as was my first time using it.  
 

I ended up in hospital on IV steroids after an urgent sigmoidoscopy showed severe inflammation in my colon, so bad they couldn't go far for fear of perforating my bowel.  I wasn't sedated so could see how bad it was myself.  They increased the prednisolone and also gave me a rectalfoam, budesonide, is that what your meds is? I haven't had a drug with that name but think it may be similar. I had  budesonide recital foam twice daily.  Unfortunately increasing steroids and the foam and within 5 days was admitted to hospital on IV steroids which also didn't work for me.  I ended up on infliximab infusions - a biologic. Very scary after years on what I considered a low risk drug for years then flaring and ending up unable to control it on a biologic.  However, despite my concern it has really helped my crohns. No longer on recital foam but reducing steroids slowly still I have had side effects which we don't know if they are caused by the infliximab or steroids as been on them since January so am being monitored and received  iv meds to prevent a reaction at my last infusion. I am beginning to think it is the steroids as symptoms still there but defo reducing as I reduce the steroids. 

please don't worry about taking medication as it is important to get any inflammation under control. Sometimes reading about the drugs can scare us silly. If you read the possible side effects of paracetamol it would scare you. All drugs carry a risk but you have to weigh up the pros and cons. Always discuss any concerns with your Ibd team.  
 

If you use Facebook there's a crohns and colitis site and support group you can join and ask questions. I have found it very helpful and informative so please have a look at that.

I do hope you have been getting on ok since you posted here and any drugs you are taking are getting on top of the inflammation  xx