High calprotectin, but no symptoms? - Crohn's and Colit...

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High calprotectin, but no symptoms?

MartialArtist
MartialArtist

Hi!

So here's my story, which freaks me out for the last week to the point of shaking hands, inability to focus at work and total paralysis of my whole life.

2 and a bit years ago I came back from living in South America for 3 months, in a country with poor sanitation, although I lived with family, we went out to eat regularly, and sometimes with our hands. I also started drinking coffee about 1 or 3 a day, which made me feel like I need to go frequently and made the stool softer. For about 8 months the fridge was out at work so I kept my lunch unrefrigerated. About 2 months ago I have noticed red, fresh blood on the toilet paper. I thought "piles" and let it be for about 4 weeks, and it didn't stop, I also started to notice mucus in the stool and sometimes I would feel like I should go to the toilet, but it wasn't too bad, I could hold until it was convenient to go. I wouldn't go more than 2 a day still, and it wasn't diarrhoea. I went to an A&E doctor, who chuckled and said "here's a deworming tablet, goodbye". I took it, and the next morning something came out that looked like a worm? It was coiled, kinda fat and white. Not too long, but quite long, I guess. May be 5 cm, approximately. Blood and mucus didn't stop afterwards so I went to a GP and he did a digital examination and said "you have a haemorrhoid that has been bleeding". But, I am paranoid, so I requested a blood test and a stool test. He gave me a stool test for FCC (faecal calprotectin) and just a generic blood test. Blood test came back all good, no signs of Oncology or inflammation (CRP markers were normal). Calprotectin came back at 1800.... He referred me for a colonoscopy, and I'm still waiting to hear about an appointment from him, but I am seriously freaking out. I'm terrified of having IBD, because it is a lifelong condition and i know people usually get surgeries for them and have their lives severely impaired.... I'm so terrified, I can't focus on anything.

I went and got a second opinion from my friend (a pathologist, but used to work as a surgeon in a local hospital) and he thought that I could have a parasitic infection because any inflammation of the GI tract raises calprotectin. So he gave me two pills of mebendazole, I took one 2 days ago and had a round of diarrhoea today (once, never came back again), but still haven't seen any worms come out.... My GP isn't instilling confidence or peace of mind, he just immediately said "Yep, IBD, colonoscopy, good bye".

Symptoms-wise, I have none? I don't have any pains or cramps, I don't feel tired any more than usual, piles seem to be causing blood and mucus (although I'm not sure anymore because the GP has freaked me out majorly), blood in the stool is kinda slowly becoming less and less, there's less of it now and kind of in very tiny clots sometimes, can't even see it on toilet paper anymore ... I don't experience pain when I have a bowel movement, and I don't have diarrhoea. The stool is shaped correctly and is of a usual colour, it's still a bit soft and loose (but still shaped regularly and of okay presentation, I guess) as if I still drink coffee, but I stopped drinking alcohol and coffee for the last 2 weeks now. I don't have a fever to my knowledge (or at least not the kind that you can tell), and my appetite is unchanged. Pretty much, what I want to say, my overall feeling is unchanged and exactly as it was, say, a year ago. Also, I don't have any family history of IBD. I'm really freaked out and terrified of having IBD.... To a point that I seriously cannot think of anything else lately, it gave me severe stress and anxiety. I'm not sure what's wrong with my calprotectin? Why is it so high, if feel fine, and I've read that mucus and fresh blood can come from piles (which the GP confirmed I had)? Has anyone ever had this? Could this be an IBD, or the test just happened to be at a bad time for an infection (no symptoms, though?). Or should I get tested for parasites? I'm so stressed and anxious that I am barely keeping it together without breaking down

26 Replies
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There are so many things, in what you have written, that make me think, that could have increased your Calprotectin levels. Please do not take pills from your friend who used to be a surgeon, but if you feel so strongly the level is wrong ask your GP for a Calprotectin re-test. Alternatively, wait for the appointment to see a GI consultant, and explain your thoughts and worries to him. The problem you have now, is not that you have got to have further tests (because that can only be a good thing, if they find something, they can deal with it, if they don't find anything, there will be nothing to deal with)but you are afraid of the results. Just remember having the test will not mean you have IBD, just as not having the test will not mean you don't have IBD, it will just mean you have it but are not treating it. Which do you think is better? Once I have got to your stage in the investigation, I want to know that everything is being found and being treated. Good luck.

Thank you for your reply! Yes of course I would rather know what is wrong with me. Yeah I understand that... But I'm just so confused as to how can I possibly have an IBD without family history, with no pain or diarrhoea, fine blood tests ... I don't feel any discomfort what so ever. This is really driving me insane.

Let's hope you're right, and the high Calprotectin reading was an error or was due to an infection or some other random reason (which is certainly possible), then you have nothing to worry about as further tests will indicate there is no IBD, and therefore, your worrying was for nothing. All I am saying is try not to worry, because, as you say, it is highly unlikely anything sinister will be found. Good luck

Thanks for your wishes. I sincerely hope that what you are going through is manageable or will become curable in the next few years.

I don't know what the tests will show and, yes you're right, I can only hope. Labs rarely make mistakes, I work in a medical laboratory (the friend I was talking about also works there as a doctor), but I am just a lab tech. I am so tired of being anxious and stressed. It's like being in an electric chair for days. Hopefully the GP will let me do some more detailed tests prior to the scope that could put some clarity into the situation

DLGJ
DLGJ
in reply to MartialArtist

I started with exactly the same symptoms as you. Even had a hemmoroid removal operation and my symptoms remained un changed and then after a year of the symptoms it began to get worse. My Calprotectin was off the scale over 2000 and I found out just before Xmas that I have ulcerative colitis and am currently on my second round of steroids to get it under control. Fingers crossed it’s not the same for you. I was utterly convinced I had cancer so for me this was a slight relief and to no what was actually wrong.

Smilerdownes
Smilerdownes
in reply to DLGJ

I think the first thing you need to do is calm down. Getting yourself in a state is not doing you any favours whatsoever. Take things one at a time. Have the colonoscopy and see what it says and then deal with it. If it shows up nothing then you need to discuss what route to go down next. Throwing all different medications at it is not gonna help until you know what you are dealing with. If it is IBD then you will deal with it - there are lots of different treatment plans that will help and it does not have to be a life sentence of pain and discomfort. Knowing what the problem is, is half the battle. Deal with it head on and concentrate on getting yourself better and stop worrying about labelling yourself.

I guess I'm just wondering, since my only symptoms that can also come from haemorrhoids is mucus and fresh blood, whether I could have something else, something treatable, and not IBD. I only ever had 1 calprotectin test (which I didn't even have to have), because I was paranoid about my health.

Well the colonoscopy will rule out or in IBD so you can then tick it off. Don’t let your mind run away with you as to what it could be. Have the tests and find out properly

MartialArtist
MartialArtist
in reply to DLGJ

So you have had mucus and fresh blood on the stool that didn't go away as the haemorrhoid was removed?

DLGJ
DLGJ
in reply to MartialArtist

Yep. I’d had two flexible sigmoid tests and each time I was told hemmoroids. I’d just had a baby aswell so it sort of fit. Had them removed and then it stayed the same and got worse where I then started going to the toilet 10+ and got referred to a gastro who did a full colonoscopy and straight away said it was ulcerative colitis. The other consultant was saying I had a prolapsed bowel and was booking me in for these other surgeries but all along it was the UC

MartialArtist
MartialArtist
in reply to DLGJ

How long did this all take to develop into the diarrhoea and pain stage? You originally had no pain, and nothing? Thank you for your replies. Did you have diarrhoea from the start?

I have to agree that you should try not to worry about it. After all, it is what it is and stressing about it won't change it. On the contrary, it could make it worse.

Like yourself, I have no history of IBD but was diagnosed with it 3 years ago - UC.

Surgery isn't always necessary, in fact it's relatively rare for IBD sufferers to have surgery for their condition. Most cases are maintained very effectively with medication. I'm on Asacol (Mesazaline) and, apart from the flare up that the colonoscopy caused, I've only had one more flare up in the 3 years since I've been diagnosed.

Good luck

I don't know how to stop stressing about it, I'm living in a state of constant, non-stop panic for a week now. I am clinging to hope that this inflammation was caused by disbiosis or some parasites (I travelled a lot a couple of years back) or some weird infection... But it doesn't help my psychological state much. My mental health has been utterly destroyed in the last week.

DLGJ
DLGJ
in reply to MartialArtist

I started with bleeding in June 2018 and then I would get mucus, I then started to get pain on and off in my lower left hand side. I had the hemmoroid op in the July 2019 and then it kicked off bad with diarrhoea and urgency in the September and got diagnosed in the December after I went private

MartialArtist
MartialArtist
in reply to DLGJ

I see. Are they in any way close to finding a cure for it?.. This is all I can think about and I can't stop panicking, because I have always been quite healthy, a cold once a year, may be... And my entire life is quite active and travel-filled, I was planning to move countries in future to be with someone dear to me. If I have IBD, I can pretty much put a fat cross on everything, it seems. So, mentally, I am pretty much completely shattered and broken

DLGJ
DLGJ
in reply to MartialArtist

Although for me at the moment I’m struggling to see how I’d be able to do that as I’m not in remission. Although I did a 10 hour flight with it un diagnosed and am doing a 5 hour in June. One of my friends has had it a few years and she travels all over the world with her work. She’s just been able to make adjustments with food and stuff over the years and knows what she can eat/drink. I understand how you feel though. I’m 29 with a 2 and a 4 year old and work, although I’ve been off for 3 months I’m just about to go back. Try not to stress until you know for definite.

MartialArtist
MartialArtist
in reply to DLGJ

I'm only 25 and i have no children. I know that if one parent has IBD then it gives the children an increased chance of having problems like that also. In the past, I wanted to one day have kids and it seems like I can cross this one out too, if I don't want to make their lives miserable. I try not to panic too much, but it's very hard to do, because all my mental strength resources have been depleted in the week after GP said he suspects an IBD.

DLGJ
DLGJ
in reply to MartialArtist

The chance of passing it on is slim. Like a very small % increase

MartialArtist
MartialArtist
in reply to DLGJ

Thanks. Do people have to take pills every single day for the rest of your life? Or is it more common to have courses and then get off the pills until a flare happens?

Hello most UC patients are healthy people otherwise and like you don’t deserve this disease.

I haven't actually been diagnosed yet as I'm waiting for an appointment from the hospital. I'm just hoping it's not IBD or cancer, and is something curable at this stage. Hope dies last. But I was just wondering about how it began for people on here and whether they have to be in medication every day for the rest of their lives, or is it more like courses of medications that they have to take when a flare happens

Everybody is different, but for most it just hits them for no apparent reason and the people in here with a diagnosis HAVE to deal with it. You are scared which is understandable, but in this forum your message tends to disable people who actually have to live with it. I know you don’t mean to do this and I do get you are scared, but think positive and remember that it’s not a death sentence ... it s just f..... sucks.

Thanks. I'll try to stay positive. Just wanted to know what the life is like for people that have been confirmed as having it.

Him I’m sorry for being harsh. We are going through it right now and it’s awful and unfair. My son is 15 and no one deserves this, but someone gets it apparently and he did as many others too.

He has a severe case and we are receiving excellent care, but this disease has its own mind too, as many here can agree on. Nevertheless we are hoping for a bright future for our son with all the best of stuff in it. We will not compromise but have to be humble still. It’s heartbreaking for everyone, but once you are in it, there is only one way to go, and that’s forward. It sucks but you have to be positive and enjoy life. We are happy our son never had pain for example and try and trust his doctors. Everyone is working hard to make his life one of high quality. He and we (as his parents) are a big part of this process because if we give up we loose life and happiness. That’s not to say there has been allot of crying and “why him” ! Of course you will be sad.

I hope for you that you will get good news and if not, please know you will have a good life and be able to travel etc. but you do have to count in an extra unpredictable travel companion, who will be with you on the trip.

I'm sorry to hear about your son. I really hope that the therapy will put him into remission for a very long time!

I'm glad he has no pain, but since you said that it's a severe case, I suppose that there will be a lot of other things seriously disturbing his life, then. Sincerely hope that the doctors will find a way to make his life normal again.. How long did it take for the doctors to diagnose him? Did he also start with just bleeding and mucus? Sorry if these questions are inappropriate, if you don't want to answer, then I'll understand

I do want to answer, because I remember having similar questions. For my son it started out of the blue one Tuesday morning. He was feeling slightly under the weather since a week with a little different stools, but unremarkable. He then went to the bathroom and his bm was like raspberry jelly. No stool just blood and mucus, which we were told is literally shedding of the colon lining. It quickly progressed from there to hourly bloody bm’s for five days in hospital until rescued by iv steroids and a first loading dose of Remicade. He was diagnosed by a emergency colonoscopy after four days in hospital. They thought it was anacute infectious colitis first because of the sudden severe onset, which is atypical for UC first time manifestation.

Blood and mucus along the stool seems to be very common symptom in UC, less than in CD as I understand it. Most have lesser symptoms for a longer time, for my son the disease just literally turned on and was acute and severe. Now his disease has regressed, but he is not yet in remission ( (3 months in) and his symptoms are blood and sometimes mucus, but mostly blood with the stool. He is lucky, as said, not to have any pain and less frequent bm’s once or twice a day, but always with more or less blood. He is receiving Remicade infusions and being re-evaluated to see if the drug works. We are still in the trial and error phase to hopefully find the right drug therapy that will work for him.

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