Reassurance/advice needed - positive FIT

[PercyPig1813]

I am looking for some reassurance/advice/experiences after a positive FIT test.
For some background, for the last three weeks I have had an on/ off upset stomach, cramping, nausea, zero appetite & muscle fatigue. It all began the day after I ate a McFlurry ( I have no idea if this caused it, but it’s the only thing I noted). I went dairy free & my stomach settled so I thought I was back to normal. Had a Chinese takeaway & the next day the upset stomach was back, with fatigue & nausea. I spent the whole weekend feeling very unwell & went to see my GP on the Monday who asked me to do a FIT test, other stool samples to check for infection & bloods. Bloods were fine, except for low B12 (mine was 136) so I started supplements. The other two stool samples were also fine, but the FIT has come back as positive with a score of 37.

My stomach had settled for the last week or so, no diarrhoea although still cramping, some GI pains & no appetite but the last two days I have noticed loose stools again in the morning, but not again throughout the day. The only things I ate on those days did contain dairy so I’m not sure if this is linked or if things are going backwards again.

Has anyone experienced this or have any advice? I’m very worried about the FIT result being cancer, I’ve been referred for a colonoscopy & the thought of waiting to have it done & then waiting weeks for results is terrifying.

I am on a similar journey, OP. My sympathies as it is undeniably concerning. Here’s what I can tell you.

First, the large majority referred for colonoscopy are cleared! You could easily be describing one of many bugs, or IBS. Also, lots of bowel diseases not nearly as serious as cancer can cause bleeding. The colonoscopy can be used for diagnosis and treatment.

Second, I’ve recently had a colonoscopy for persistent distress which sounds similar to yours. My regular FIT test of 18 months ago and one from January were both negative, but with ongoing symptoms I was eventually offered the procedure.

The event itself was nothing. I had mild sedation with a tiny bit of Fentanyl (a typical combination), and felt not a twinge. I was a bit groggy for the rest of the day and perhaps a little tired the next, then fine. I hear mixed things about what it’s like to rely on gas & air so I am enthusiastic about the sedative option. I only dozed off for a few minutes.

The prep is no fun, but it is quite bearable and I say that as a complete wimp.

I had a couple of small polyps removed. One remaining polyp looks dodgy and wouldn’t shift so I have been referred to a tertiary centre that does newer, noninvasive surgery as well as traditional surgery. The consultant I saw thinks I will be a good candidate for the former.

For the patient this is essentially the same experience as a colonoscopy. As this technique is now used with very, very low recurrence rates on many dodgy polyps that would have required invasive surgery previously (because it is good to get a polyp with a high suspicion for cancer out in one piece), I find this utterly amazing.

Nevertheless I have done a bit of reading around bowel cancer. I was very glad to read that even when traditional surgery is needed, the large majority now lose only half the bowel and what’s left functions almost normally. And even more glad to read that most often this is a slow growing cancer, so that if caught early the chances for cure are excellent. It sounds like things have moved quickly for you so that’s great.

I see the consultant who made this referral soon, and I agree that the waiting is very, very hard.

Too many ‘very’s’ in my post, a reflection if my nervousness. Sorry about that

I'm in a similar position I have a colonoscopy in just over two weeks time. I have had change in bowel habits, more recently cramping and constipation, not feeling fully emptied amongst other things.

My FIT came back at 400 and my Calprotectin 144. Last week I had noticeable blood in my stool I panicked and went to my GP who told me It's a sign of inflammation and all I could do was wait for colonoscopy.

Im very worried about the procedure and what may be found.

@ncforthisxxxThank you so much, this is really helpful. I’ve never had a colonoscopy before & was unsure what to expect. I’m trying to stay away from Google as I don’t think my anxiety could take it but like you said, the waiting is very hard & the desperation for answers is a real struggle.

@ThomastuchelSorry you are going through this too ❤️ I have to do a Calprotectin sample tomorrow. The whole process is just terrifying isn’t it. I have two young children & my mind is constantly racing.

I am worried and hopeful it's nothing sinister but it doesn't stop you from fearing the worst. I am incredibly nervous about the colonoscopy but I have had some good advice on here.

Most cases are not bowel cancer but it’s important get it checked because BC is one of those cases that can be treated more effectively if caught early.

I developed chronic diarrhoea, abdominal pain etc. For reference my FiT was 70 and my Calprotectin was 520. I also have a family history of BC.

It was Inflammatory Bowel Disease not BC and is now under control. In other words there are lots of things it can be that are not BC and it is more likely to be one of those. In addition, in the worst case scenario they can only treat it once they know you have it so getting checked is 100% the right thing to do.

Thank you. This is really helpful to hear. My colonoscopy is booked for next Thursday. I’m very nervous but would rather have it done than risk not doing it.

They must have told you that 37 is really low? Mine was 51 & was only slightly above the cutoff for colonoscopy. The cut off for the standard NHS screening over 55 is ?120 (less in Scotland).
I'm sure all will be well, good luck

There are two different FiT thresholds

Symptomatic is 10
Non symptomatic/general population screening is 120

So if you are symptomatic you can get a positive FiT at the GP even though you might have had a negative one via screening just before your symptoms started.

They did say it was low. I am symptomatic so the threshold is anything from 10. I’m in this strange middle ground of not wanting to be too hopeful but not wanting to sit in fear 24/7 (I am diagnosed OCD & have severe health anxiety so you can imagine the conflict). Does anyone have any advice or tips for the colonoscopy? I was recommended in my pre assessment to stick to gas & air but I’m wondering if actually sedation would be better?

My dad had a score of 60 and he was sent for a colonoscopy because he was quite badly anaemic and that combined with the positive test plus some other symptoms (changes in poo habits etc) raised all the flags.

He was absolutely fine - nothing nasty detected. Your test result is pretty low so if you can, focus on that. You’ll get your answer next week at the appointment.

Do you have someone to bring you home and stay with you for 24 hr, OP? Are you basically healthy?

If so I must say I do not get the British preference for gas and air. Great when it works, but it doesn’t always. The mild sedative + mild painkiller made the whole thing so easy for me.

I do, my partner is going to come with me. My health has been a bit up & down this year. I had a breast abscess earlier in the year which has resolved now & am currently also waiting for a neuro appointment due to pain in my leg, reduced reflexes & back pains which is also concerning me.
I’ve had gas & air in labour & didn’t find it helpful so I think I will request the sedative to be safe. Thank you for your advice!

I’ve had colonoscopies with sedation and with gas and air. Both were fine for me. I was happy to watch on screen what was going on. However you can feel the endoscope moving inside you a bit and it can be uncomfortable as they navigate around.

G&A
pros
No downtime I was able to leave straight away
I didn’t need someone to be with me

cons
You are aware of what is happening

Sedation
pros
You are more relaxed and unaware of the procedure

cons
Requires a needle /cannula to administer
You need to recover for a bit in the hospital to make sure you are ok
You will need someone with you for several hours afterwards

One thing I will say is that the bowel prep is really important. There have been quite a few advice threads on it but do start your own if you need it.

I guess there are different reactions, perhaps to different sedatives. I was awake, relaxed but able to follow the screen, for a good part of the procedure.

PS The cannula felt like a cat scratch going in, then it was easy to ignore.

It’s definitely sensible to investigate your symptoms. Just to say, I used to work in this field and (biopsies aside), we always gave the results out as you leave. They have a good idea of what they can see (magnification is high) and they will talk you through the results and explain if there’s anything else to do going forwards.

I may have had heavier sedation because I was having a gastroscopy first and I really did want to be unaware for that one (I have had one without sedation before and I am not a fan)

I had a Fit test of 34.
Had a colonoscopy and was put through on the 2 week wait.
Take the sedation, if you have a dodgy bowel loop it will be uncomfortable.
I still have ibs, am more aware of my triggers, but more importantly I'm completely dairy free. Total game changer.

Thank you, this is all really helpful to know. I’m pretty sure I will ask for sedation, I’m feeling anxious enough & hopefully this will help me to remain calm & help with discomfort. I’ve got to start the three day diet before the liquid tomorrow. Feeling a bit apprehensive about what to eat as I can’t have dairy, so it looks like white bread, chicken & rice will be mostly it!
Thank you all again for sharing your experiences & advice, it really is appreciated

Mine was higher than yours, nothing more sinister than internal haemorrhoids found. I had the sedation, aware enough to have a bit of a chat with the doctor and disinhibited enough to have a giggle about farting afterwards with the lass in the next bed and the nurse Mind, we were told we couldn't leave until we had..

And my meals in the day before prep were rich tea biscuits and lemonade

Make the prep up and put it in the fridge, it's better colder ime. And I found drinking it with a straw more bearable. Vaseline or sudocrem after every loo trip. Wipes nicer than loo roll after a while too.

Hope all goes well

I had my calprotectin back today which was 22. My doctor said this would rule out IBD but if anything it has made me more concerned as this would’ve been the non-cancer way of explaining the positive FIT.

There can still be loads of things behind the positive FIT result, OP.

My sympathies, the wait is not easy. 🌺

I have had 2 positive fit tests and been sent on 2 week referrals. Both times there was nothing sinister found at all.

I do not have sedation and have found the procedure very easy to manage without. There was a twisty bit that was painful but breathed through it and it was short lived. I had the procedure on News Year Eve so wanted to be able to go out that night!

The Prep is not as bad as people make out. It takes time and is a bit boring having to be stuck by the bathroom but it is not painful.

Try not to worry.