Adult dc, a lot of blood in stool, pale, exhausted - no 2 ww referral?

[TangledandEmbrangled]

Took my eldest (23 and neurodiverse) to the GP today after finding out they have been losing a lot of blood with their bowel movements for over a month. Following several isolated episodes last year they also hadn’t mentioned to me.

I initially assumed probably piles or a fissure or something, then they showed me the aftermath in the toilet and it was shocking, there was lots of blood, large clots and a mix of dark and bright blood.

Managed to get a GP appointment (three days later after calling at 8 every morning!) and took them today.

GP was pretty good, did a physical exam, no piles or fissure, but abdominal pain during the exam. Ordered stool samples for fecal calprotectin and potential infection and a load of bloods, but said dc doesn’t meet the criteria for a FIT test so they couldn’t order that. They have also done a referral to Gastroenterology, but not an urgent one.

Dc has had a change in bowel habits to near constant diarrhoea, is losing copious amounts of blood several times a week, is pale with dark circles around their eyes and so exhausted they have been sleeping in the day, which is unlike them. This week the bloody bowel movements have been accompanied by abdominal pain and they also felt pain during the abdo exam.

On top of being refused a FIT test, the GP said the blood tests should be done there and to book them at the desk on the way out. First available appointment is almost 5 weeks away! I specifically asked the GP if dc should go to the local hospital for them, as I was sent there last week for blood tests the same GP surgery ordered for me, but they said no, they had to be done in house.

I am so worried about my dc and while I am pleased that the GP took it seriously and did order a lot of tests, I can’t help thinking with their symptoms they should be on the 2 week pathway.

For reference, dc has no first degree relatives with bowel cancer, but my FIL developed an aggressive type it in his 50’s and has had multiple re-occurrences.

Also, both GP and Gastro have in the past tried to test them for Coeliacs, but they were unable to stand eating the amount of gluten required for the test after an NHS dietician told us to remove it from their diet. Due to how badly dc reacted to the gluten challenge, Gastro told us assume they are coeliac and to keep them off it permanently, but they couldn’t diagnose without a positive result and biopsy. As a result, dc hasn’t eaten gluten for over 12 years now. GP is re-doing the coeliac blood test, but as my dc doesn’t eat gluten that seems a bit pointless.

I am dc’s carer, as well as their Mum and have full involvement in all their medical care. Should I be pushing harder for them to have an urgent/2ww referral or am I being over-anxious?

I would push very very hard for an urgent referral

FIT test is just looking for blood, you already know there is blood.

Speak the the practice manager, explain that you’re not happy with the situation and want to be referred under 2 ww. Maybe check the NICE guidelines.

I am wondering if it’s IBD.

NICE guidelines for referal for potential colon cancer says referal should happen when

• Aged under 50 years with rectal bleeding and either of the following unexplained symptoms:
• Abdominal pain.
• Weight loss.

I would point out that as a ND person they aren’t allows able to identify pain. It’s also worth taking photos of blood for show dr.

This won’t be a popular opinion but with losing that much blood I’d be whisking them up to A and E. They can do the appropriate blood tests etc there. Losing blood like that is an emergency and you need the urgent treatment.

I’d request an emergency appointment with a different GP for a second opinion. Be very clear with them and explain that you want an urgent referral - quote the NICE guidelines.

Alternatively if you can afford it I’d personally just go straight to private.

As a GP I would be requesting FIT and arranging for the bloods to be done urgently (usually same or next day). A 2ww would
not be accepted at our hospitals without up to date FIT and Bloods so I’d arrange to review with results, then arrange a referral according to results.

I imagine the faecal calprotectin will come back raised which would trigger an urgent gastro referral.

I’m not sure they will do that without the necessary results, but they will only offer a blood test in 5 weeks! I am going to speak to them again and say I want to collect the forms to take to the local hospital phlebotomy service instead. I honestly can’t understand why I was sent there for ‘urgent bloods’ following the worst headache of my life, but my dc has to wait 5 weeks in this condition.

I can't imagine the worry this must be. I would guess with that amount of blood, the calprotectin is going to be raised and would hope this will spur your GP into a gastro referral pretty sharpish.

Can you try asking the surgery again for forms so that you can get the bloods done sooner at your hospital? 5 weeks is just rubbish.

I agree re the FIT test, but a lot of the guidelines seem to want a FIT test result for urgent referral.

I have checked the NICE guidelines (which is what the GP said they were double checking during the appointment and my dc didn’t meet the criteria) and as far as I can see, change in bowel habits, visual blood and abdominal pain should be enough for a 2ww referral, I don’t think you have to have weight-loss, (although dc hasn’t been weighed in ages anyway, but there is no obvious sudden weight-loss). Maybe I’m reading it wrong or not understanding it though?

Could well be IBD, but equally diverticula or a bleeding polyp, whatever it is dc needs treatment sooner rather than later, as they are getting weaker and more exhausted by the day.

@Bristolinfeb we took photos with us, but the GP didn’t want to see them.

Good point about dc being ND and not great at identifying bodily sensation/pain etc too.

@Pigeonqueen Unfortunately I won’t be able to get dc to A&E, it was hard enough getting them to the GP. They have OCD and are terrified of Covid and Noro in particular. They had an injury last week and we were directed to A&E by 111. DC couldn’t even wait in the waiting room as people were coughing and one lady was being sick. They had to wait outside and I went to fetch them when their name was called. It totally freaked them out, so there’s no way I’ll be getting them anywhere near the place again any time soon.

@SlaveToAGoldenRetriever Frustratingly, we lost our private healthcare at the end of last year when dh was made redundant. We are now on half the income we were on, so have no chance of covering the cost of private.

Really sorry to hear this. I empathise. I have a son with complex needs who is very similar.

I agree all those things need urgent treatment.

The GP said my dc doesn’t meet the criteria for a FIT test, I think they said it’s because they are too young?

That’s what I thought though, you can’t get a 2ww referral without the FIT result, so we’re stuck.

I expected urgent bloods at the very least, but reception were insistent the first available appointment is just shy of 5 weeks away. Surely if that’s the case we should have be redirected to local hospital phlebotomy? It’s literally less than a 10 minute drive from our house and was empty when I was there for my urgent bloods last week.

They didn’t book a follow up appointment to review the results of the tests they ordered, just said call to chase Gastro referral if we don’t hear anything.

@Sarahlou677 possibly, but the GP said it depends how high the result is, as a positive calprotectin doesn’t always equal a referral or speed up one that’s already been made.

That’s what I’m going to do. No point today now, as they will just say I can’t speak to a GP and econsult is closed for the day.

I will do an econsult as soon as it opens at 8.00 am tomorrow and ask to collect the forms asap to take to the hospital. No point in speaking to the booking team again at 8.00 am, as they will just repeat that if the GP said in house bloods then that’s what they have to do and there are no appointments available sooner. I doubt the GP had any idea we would have to wait that long to get them done at the surgery.

It can take 24 hours for an econsult to be dealt with, although it’s often much quicker and last time they were back to me within the hour, but it’s still going to be faster than 5 weeks!

Thanks all, relieved to hear I am not just being an over-anxious mum. I will push hard to get them seen sooner now, starting with urgent bloods done at the hospital.

How worrying, sounds awful for your DC and you.
If you can, keep going back and pushing the issue.
If gastro at the hospital want a fit test, they'll send one, the hospital ones are different and more sensitive anyway. So they would ask regardless.
If you can, I would scrape the money together for a private consultation with a gastro. Often I'm seeing people do this, and then referred into NHS with a more speedy diagnosis. Unfortunate, but it seems to be the way to speed things up around here. It was £140 around us recently to have a private initial with a gastro the same week (the same one it takes 18mnths to see on NHS)

The symptoms sound very similar to my DD when she first became ill with IBD. Like you I was very worried about cancer.

It took a month of battling with the GP , an A&E visit where they sent us home without even examining her and then after another week she was admitted to hospital as an emergency by the GP who had finally deigned to see her face to face. By this time it was an emergency as her body was shutting down and she actually collapsed and became unconscious while on the assessment ward.

She was in hospital for a week while they did all sorts of tests and scans. Another two weeks later she was given a colonoscopy which diagnosed IBD and confirmed via a biopsy that it wasn't cancer.

So it was around 8 weeks from her first becoming ill and bleeding before we knew what the issue was and then treatment started a week or so later.

I hope you find out quickly what it is and then find a treatment that works.

You really need to have bowel cancer eliminated from your concerns. I had bowel cancer in my thirties and was the only one in my family to ever have it. I’m in my sixties now and am still the only one. I was fobbed off a lot by doctors and ended up taking myself to A&E. They knew immediately from a urine test that something was very wrong. They admitted me into hospital that day, gave me extensive tests over the week, followed by surgery. If I hadn’t taken myself to A&E I may well not be here now. Not saying that is what your dc has but you need to rule it out.

@TheEllisGreyMethod If I had the money I wouldn’t hesitate, but we are barely scraping by at the moment. Usually my parents would offer, but I haven’t told them about this, as DM will panic and she’s not in the best of health herself right now.

Haven’t read the full thread but it screams inflammatory bowel disease to me OP.

He needs to go to hospital for a diagnosis and to start treatment. Sooner rather than later.

Not to worry you but I put off similar symptoms at 18 and ended up losing half of my bowel and spending 2 weeks in intensive care followed by another month in hospital. It took 6 months of treatment to recover.

Its really important he is seen soon.

@TangledandEmbrangled as the mum of a 34 year old who depends on me and his home based carers for everything I have to say what you’ve described is my worse nightmare and I just want to give you a very unmumsnetty hug.