Colonoscopy on 2WW colorectal pathway because of anaemia

[LovedFedAndNoonesDead]

Hi there, I’m looking for stories from
people who have been referred for colonoscopy on 2WW pathway because of anaemia.

I was discovered to have anaemia because of pre-op blood tests for surgery for something else and I have had no other symptoms of bowel cancer apart from the low Hb (114g/) and low ferritin (8ug/L). Because of the anaemia the surgical team recommended a qfit test which the GP arranged and I sent the test went by post on 25th October. I got a message from my GP on Tuesday last week to book an appointment to discuss the results. They told me it was positive for blood (the results say it’s higher than their upper reference range) and, because of that and the anaemia, the GP arranged a 2WW referral according to NICE guidelines and I have an endoscopy and colonoscopy booked for Monday afternoon next week.

Today I received the information pack and the bowel prep sachets (have been sent Plenvu). I will be starting their recommended low fibre eating plan from Thursday and have to go onto clear fluids only from lunchtime on Sunday, then have to start the bowel prep from 6pm with the second sachet from 6am on Monday morning. They have supplied leaflets explaining both procedures individually but not if having both on the same day. I have opted for sedation as I really couldn’t cope with an endoscopy without in the past so no way could I manage both while awake.

I am obviously concerned about what they will find during the procedure and what that will lead to. I have young children (5 year old twins who started school in September) and my husband works full time so, if anything happens to me and I need treatment, it’s going to mean a lot of upheaval for us as a family. We have limited support and no one else in the family in our area drives apart from me.

I’m looking for people’s stories about their outcomes after referral under the 2WW pathway for colorectal cancer when their only symptom has been anaemia…..

Hi OP,

I’ve just had this done for the same reason - can’t tell you outcomes as waiting on biopsy results which the nurse said can take anywhere from 1-3 months.

“They have supplied leaflets explaining both procedures individually but not if having both on the same day” - for me, they went down first, then there was about 10 mins whilst the consultant wrote his report and they gave me more drugs/shuffled into the next position on the bed, then they did the colonoscopy. So those leaflets will all be accurate and contain what you need to know, no surprises.

don’t be afraid to speak up and say if you’re not feeling drowsy as they can give more meds. You’ll not be totally asleep but a bit floaty.

sorry I can’t provide more info but best wishes (for the prep), get some nice food treats for after :)

i had exactly the same done. severe anaemia. other blood tests (liver, kidney, hormones etc) normal. MRI normal. they did endoscopy +biopsy and colonoscopy. All normal. said this was quite common. my blood is now fine, they said this often happens nothing to worry about. it was all extremely worrying and unpleasant at the time.

My FIL. He was found to have stomach polyps causing gastro bleeding. They removed them and all fine since.

OP I had both proceedurs on same day last week and had the sedation - midazolam and fentanyl. I was exceptionally anxious but the note on my initial report said I tolerated the proceedure well. I remember nothing aside from two brief moments where the scope was being maneuvered round a corner and they gave me gas and air. Remember nothing if the endoscopy!!!!

I have had low Iron ( 10 or 11 something) for 20 years and sometimes my ferritin was unmeasurable it was so low! Its slowly improving now I now longer have periods.

Although the biopsy results can take ages any obvious abnormalities will be visible on the day, tumours or polyps etc and they go through it with you after you gave woken up properly so you should have hopefully some initial reassurance on the day.

theres various reasons for a positive FIT test not just the big C so please try not to panic- hard as it is.good luck x

I had the same procedures for the same reason in August. The doctor told me straight afterwards that there was nothing of obvious concern but I did have a polyp that was sent for biopsy together with several other biopsies and they said the results might take up to 3 months. They actually came a few days ago and fortunately were all normal. I was very worried beforehand about the actual procedures and what they might find. I did not have sedation and would recommend it to anyone else as I found the colonoscopy quite painful and the gas and air seemed to have little effect. I did not have any pain afterwards, just discomfort. I am not sure what to do next as I am still on iron tablets but have not had any further blood tests to see if the iron levels have improved, so I will contact my GP surgery soon if I don’t get called back by them. I have never been anaemic before (I am a long-time blood donor) so don’t know what the reason for this is. Good luck for next week. The bowel preparation stuff is horrid but you can treat yourself to something nice when it is over.

No anaemia, just low ferritin. Positive qfit but a low positive. 2WW for colonoscopy. No cancer found and low ferritin still unexplained after colonoscopy.

Colonoscopy found I have what they believe is a cancer condition so I’ll have lifelong monitoring to catch anything before turns malignant.. and so will my immediate relatives including my 3 DC.

good luck @LovedFedAndNoonesDead it’s not a nice process especially the prep (best tip is get some tena lady pants as getting to the loo in time can be challenging..) I hope you get some answers and it’s not the news you’re dreading.

Oh and as pp said they’ll know a lot on the day. I got even the likely cancer syndrome diagnosis straight after. Just had to wait for 8 biopsy results and my genetic test referral.

My sister had this. Turned out she was coeliac. Hope it all goes well OP

Thank you all.

Hearing how long biopsy results can take to come back is worrying.

Last year I had another 2WW referral due to a mass in my chest found on an X-ray before starting new medication for my arthritis; it turned out to be nothing serious; but it’s been 17 months of inconclusive results, disinclination on the part of some of the surgical team caring for me to look for answers to ambiguous reports about results, and delays in arranging follow up tests and follow up appointments to discuss them! But the waiting for tests, surgery and then results was quite distressing.

To hear I may have to potentially wait months for results with this is going to give me anxiety.

@LovedFedAndNoonesDead my wait was approx 10 days post colonoscopy. They’ll be able to tell you after the procedure how long it’s likely to take and they’ll also have a pretty good idea on the day whether it all looks benign if looking for malignancy. Its one area of the body where it’s relatively easy to tell visually - they just need the biopsy results back obviously to ensure they’re correct. That’s what I was told anyway. I had lots taken but they were able to tell me on the day that they were almost certain they would all be benign. And they were.

appreciate it doesn’t make the wait any less anxiety inducing in reality though.

Thank you, I guess I’m just catastrophising a bit about it all. It was bad enough going through the 2WW process last year but, to have it happen again so soon, especially when they knew back then that my bloods were out of whack but did nothing about it; so they could have done something about it earlier rather than just before I’m due to have surgery for something else!

Low ferritin and positive qfit was Crohn's disease for me. Not serious though, as mild.

Did you have any changes in bowel habits or weight loss associated with the Crohns before it was diagnosed or was it only the low ferritin and positive qfit

It was only the low ferritin. My bowel habits have always been irregular. I didn't have weight loss but having weight loss is a common symptom of IBD, so I'm a minority in that. My child has IBD and was quite underweight before diagnosis and treatment.

All my other tests were completely normal and good. I have had some problems with occasional indigestion over the years and a bit of abdominal pain in the 2-3 years before diagnosis, but not anything that triggered any further investigations. Doctor's always wrote off the low ferritin as 'you're a menstruating woman, that's why'. The qfit was just routine testing which finally got me a colonoscopy and diagnosis.

Thank you.

I’m post menopausal so the GP doesn’t have that as an excuse for my low ferritin; between 3 teams at 2 hospitals and the GP, they’ve just simply ignored it for over 18 months. I also have a B12 deficiency but my intrinsic factor antibody test was negative so they have just decided to give me a loading dose course of injections to see if that helps.

The earliest result I have is April 2023 which coincided with a rheumatology appointment and bloods/chest X-ray were done before starting biological treatment for RA; the X-ray threw up a shadow on my lung and I was immediately referred on 2WW pathway for lung cancer and was having major surgery just 7 weeks after the chest X-ray - but the tumour wasn't cancer thankfully! I still need follow up surgery as there is a portion of the mass remaining, hopefully that will be taking place in the summer as it’s means me being away for 7-10 days. During that admission my Hb was around 109 and my ferritin was 8 - the GP surgery monitored the Hb but did nothing about it and didn’t offer any supplements.

I’m actually quite angry that no one bothered flagging this up over the last 18 months or took ownership of it until I’m about to have surgery for
something else!! It’s very much been a reactive situation rather than proactive!

I was anaemic and did the FIT test. This was +ve so I was referred on the 2 week pathway.
Unfortunately they were unable to do the colonoscopy due to intense pain so I had a colonography instead.
Unfortunately this showed a narrowing my colon close to my liver.
I had a R hemicholectomy to remove the tumour with 43 lymph nodes all of which came back clear.
Im now 5 years in remission and still all clear.
I didn’t have any symptoms and the anaemia was discovered during a routine blood test.
Good luck x x

Thank you for sharing your experience @Borntobeamum; that must have been a very scary time for you and your family/nearest & dearest. This is the sort of thing that’s worrying me. It sounds like you had quite a major op to deal with; can I ask what age you were at the time?

It was scary. However once I got the diagnosis a sense of calm settled over me. It was out of my hands and I had to put my trust in the surgeon.
I was 56 at the time x x

Well, I had the procedure yesterday and they found no obvious bleeding that would cause the positive qfit test or any other reason for being anaemic so we’re back to square one on that front really! There was a small polyp which they removed and will send off for biopsy and they’ve done gastric and duodenal biopsies for coeliac screening as that’s the only avenue they haven’t, up to now considered. I’ve been told the results will take 6-8 weeks to come back.

The endoscopist did say his assumption would be one of the medications I take but I was anaemic months before that was prescribed so, while it may be part of the problem, it’s not the root cause.

I’m also hoping, now they’ve ruled out any sinister causes, that I will be given another date for my surgery which I was supposed to have next week.

Just a question for you @LovedFedAndNoonesDead have they managed to correct your anaemia?

Glad your procedure went okay. A family friend is going through similar as became v. anaemic with no obvious cause.

They haven’t even tried to correct it!! GP is going to prescribe iron on alternate days but the tests came first! I also need a course of B12 injections as I’m deficient in that too!

Years ago, I was given ferrous fumerate for 3 months after an episode of anaemia and it did nothing for my Hb count but did give me dreadful diarrhoea. They decided there wasn’t a lot of point continuing the medication as it wasn’t doing anything beneficial. After that, my bloods improved but, at the time, the only issue was my Hb, now it’s my ferritin as well.

I’m actually quite angry that no one bothered flagging this up over the last 18 months or took ownership of it until I’m about to have surgery for
something else!! It’s very much been a reactive situation rather than proactive

This sounds exactly like what happened to a relative of mine. She was on the waiting list for an op, and the doctor asked her if she knew she'd been anaemic for ages. She didn't. The GP hadn't got her in, or told her to take iron, or anything else. She had to go for a colonoscopy which didn't completely work, so she had to have the CT scan as well (so two lots of prep) and they found nothing. But she was still anaemic. She doesn't eat red meat so maybe that's why. Anyway, they did the op so hopefully they'll do yours now as well.

They have now said they won’t operate until they have the results of the biopsies done just in case I am coeliac (even though it makes no difference to the preparation, execution or recovery from the surgery) - I seriously reckon they’re just finding reasons to avoid giving me a date!!