Bowel cancer.. IBD.. or a fluke

[Worrying34]

Hello, posting because I think the stress of all this is starting to really get to me after it dragging on over 3 months already.

At 3 months postpartum I had a scary incident where there was a lot of blood after going to the toilet. Went to the GP really hoping it was nothing and that anything serious could be ruled out quickly.

Fit test result was low but calprotectin was 170.. so the GP said to repeat it 4-6 weeks later. The next result was even worse at 253 but because I had a stomach bug 2 weeks before the second test they’ve told me to do a third one, which I’m now waiting on the result for. I think it will come back in the next couple of days. If it’s high again I feel I have no option but to accept there’s something really wrong here and the other two results weren’t just flukes.

Im so scared it’s cancer. And slightly less scared but still very concerned it’s IBD. A family member does have Crohn’s and I’ve seen what they’ve been through.

Strangely I don’t seem to have any symptoms and the bleeding has never happened again over the last 3 months.

Im starting to feel like I really can’t handle the stress of it. It’s been hanging over me for more than 3 months and is taking away the joy of my new baby.

I don’t know what I’m hoping to get from people here. Maybe some advice from anyone who has had similar or someone medical who knows more than me.

IBD is often in the thousands, but not necessarily. If you have a family member with Crohn's it is more likely. Any chance you had a fissure when you had the bleed? They can bleed a lot.

Calprotectin is an indicator test, not the be all and end all. How is your CRP blood test?

Even if you did have Crohn's, it doesn't mean you will need any of the harsh treatments. I have a family member with Crohn's and I have also seen them go through hell with it. A few year later I was diagnosed with Crohn's as an incidental finding. I have never been medicated for it, it is just monitored. Experiences with Crohn's can be so different. My calprotectin has also never been high.

Your best bet is to have a colonoscopy to see what, if anything, is going on. It's also possible you have a polyp that can be removed at the same time.

Odds are everything is fine, but good to make sure.

Thank you for your reply.

When you say your calprotectin was never high, was it in the normal range or similar to my results? Did you have symptoms?

They didn't do a CRP blood test but took lots of other bloods, which were all fine, although I already knew my iron levels were low after giving birth so had been on iron for a few months.

I really have no idea what the cause of the blood was. I suppose a fissure or hemarroid is possible but the GP couldn't see an obvious cause when they examined me.

My calprotectin has only been normal, even when I had the worst symptoms. My doctor thinks that maybe my Crohn's is too mild to show in the test. I do have some symptoms but nothing major or that I can't live with. I just try to have a good diet and lifestyle and keep it monitored.

My Calprotectin has been as high as 2000+ and they still can’t establish a cause other than inflammation, but negative for IBD 🤷‍♀️ the Gastro is flummoxed. I’ve had multiple tests of all natures.
I’ve never had blood though.
id push for a colonoscopy and make sure they take biopsies.

Do you think I should be pushing for a colonoscopy even if the third result is back to normal?

They did a FIT test once which was low but I’m still worried in case it could be cancer. Nothing about this makes any sense to me.

Agree with PP that calprotectin is an indicator and not necessarily the whole story. I have crohns and my consultant has stopped using calprotectin tests for my monitoring as mine always come back as normal range, even when colonoscopies have shown I’m in the middle of a flare up.

Also agree with PP who mentioned a fissure - I have had these and they can cause a large amount of bleeding.

I imagine if it is high again then something like a colonoscopy would be the next step for you. Wishing you all the best.

If you’re having blood still, then yes.

No the blood was just the one time, and over 3 months.

I wouldn't be concerned at all to be honest if it wasn't for the calprotectin test results.

I too have a high Calprotectin result over 600 for the last 15 months and have had colonoscopy which was clear and now awaiting results of a CT scan the Consultant when I saw him in November was really quite dismissive and to be honest I wonder if there is anything much wrong with me but I too have had no blood so just hoping I’m signed off and I can sort out my travel insurance properly!

That's something you have to decide with your doctor. My gastroenterologist has said that the tests and numbers are only part of the picture. In the end, symptoms are important in deciding course of action even if the tests are normal. Do you have any ongoing symptoms?

I note a number of people on this thread saying nothing was found on colonoscopy. You can also have micro-Crohn's, so not sure if that has been considered.

Another easier option you could consider is an MRI or ultrasound. My MRI showed more than my colonoscopy (not much though as it's very small) and an ultrasound with a specialist bowel ultrasound practitioner was also useful.

I don’t really have any symptoms other than the one off bleeding 3 months ago, which is partly why this is so strange.

Although now obviously I’m scrutinising everything and convincing myself maybe there has been a change in bowel movements but I kept a diary for several weeks which just seemed to show slightly variation rather than any significant issues.

Im pretty certain the stomach bug I had really was a stomach bug rather than a flare up of symptoms as it started a day after my DD got sick and was very short lived.

Agh I really hate how things work with test results now in the UK.

Im literally on edge ALL THE TIME in the days (up to a week) after giving in a stool sample because I have no idea when the result is going to pop up on the nhs app or I’ll get a call from the doctor.

I really wish for the sake of my anxiety it was just agreed that they would call you with the results on a specific day and time, whether it was good news or bad.

@Worrying34- according to my results in nhs app it says anything over 300 should be automatic referral to gastroenterology ie, colonoscopy.
As mine is so high gastroenterology are testing me every few months (after all the cameras and scans). It’s gone down a bit but is still over 900.
Mine was normal once, but only once, in 4 years!

I’ve had Calprotectin levels off >2000 a couple of times in the past. Some blood some mucus on and off over last few years. Inflammation showed on colonoscopy when initially referred on a 2 week wait but biopsies didn’t show IBD and nothing on CT scan. My ‘urgent’ GI referrals each time have taken 6 months or so and the answer from them is a ‘dunno’

So in my NHS trust its 250 and over for referral but they didn't want to do it after the 253 result because of the recent stomach bug and wanted to do a third test a month later instead. So I guess it all depends on this current result I'm waiting on..

Really frustratingly I actually did a stool test between the 170 and 253 results and like a week before the stomach bug but they lost the sample! So its dragged on 2 more months

I think the approach your trust takes is inappropriate given people like me with active Crohn’s can repeatedly produce calprotectin results in the normal range! It is not a fail safe measure!

That seems reasonable. One of mine is going to have a calpro test but has just had a stomach bug, so I am waiting. I don't want an artificially high result if there is nothing going on but irritation from the bug.

For me, I kind of 'knew' I had Crohn's. That said, I've seen a family member with it, so it is very familiar for me to base that feeling on. It just took a few years to get a colonoscopy since my symptoms are relatively mild and my calprotectin is normal.

It’s not a comparable situation though. Presumably with active Crohn’s you were having symptoms? If OP had ongoing symptoms like bleeding or other GI symptoms at the time of the 253 result then they may well have referred her earlier. Given that she didn’t, and it was only just over the cut off, it seems reasonable to wait.

Wishing you all the best OP! I too hate the NHS app for results, I don’t think it benefits patients in general.