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?

@UpUpUpU Thank you for asking.

He’s been better this week, the bleeding slowed then either stopped or is no longer visible and he looks less pale and exhausted.

GP literally just called with his results. Dc didn’t put them on speaker though, so had to glean what I could, as dc is not great at retaining information he’s just heard:

• No infection
• Inflammation normal range
• Calprotectin normal
• Kidneys were slightly off on one kidney (which apparently can be affected by handling of the sample)
• Not anaemic
• One slightly off rbc reading (Not sure whether that might be affected by the fact he has always had delayed clotting/prolonged prothrombin, but to be honest, there were plenty of clots, so not sure what to make of that.)

Bloods to be repeated first week in March and we’ve been given a number to start chasing Gastro appointments re his referral.

Unfortunately I don’t have the actual figures, as he doesn’t use the NHS app himself and I am only allowed restricted access to his health history, even though his letter requesting I have access on his behalf says ‘full involvement in all health and health related matters’. I will have to take him in to get a print out and try to sort that out.

Sample was taken on Monday, which was after the bleeding had stopped, as he couldn’t manage to go in time for us to drop it to the GP’s and wouldn’t allow us to refrigerate a sample at home. Not sure if that might have affected the results, as the ‘flare’ for want of a better word, had settled down, but I assume things wouldn’t settle down that quickly enough for results to be normal?

Yes, you can take a fecal immunochemical test (FIT) if you are bleeding from your anus. In fact, clinicians are recommended to use FIT in patients with rectal bleeding.

Why use a FIT
FIT detects a breakdown of hemoglobin, rather than fresh blood

FIT is 99.9% effective at ruling out colorectal cancer in patients with rectal bleeding

FIT can help direct patients to the most appropriate test

When to take a FIT

If you see blood in your stool, toilet bowl, or on toilet paper
If you have unexplained rectal bleeding
If you have persistent symptoms
Other tests

Your doctor may perform a physical exam
Your doctor may ask you to see a specialist for a flexible sigmoidoscopy or colonoscopy
Other symptoms Abdominal pain, Altered bowel habit, Weight loss, and Iron deficiency anemia.

Blood in your stool can be a sign of a health condition, such as anemia, colitis, or colorectal cancer.

Where did you get that from? If FIT is 99.9% accurate at ruling out colorectal cancer, then please tell my why anyone with a positive FIT is referred for a colonoscopy to find out WHY they are bleeding?

this could be anything. Polyps, colitis, chrons, piles and yes, cancer.

Surely that means that 99.9% of people with colon cancer will show up on a fit test, but that not all people who have a positive fit test will be because of cancer.

It's the difference between sensitivity and specificity. A sensitive test picks up most cases of x. A specific test only picks up cases of x, and doesn't also accidentally pick up cases of y and z.

@EveryNightInMyDreams Where did you get the advice not to FIT test when blood is present?

You pick up on the statistics and miss the valid point that FIT tests don’t test for fresh blood and are indicated when bleeding from the rectum or anus is present.

Loads of studies have statistics on how effective FIT testing is maybe not all the same results statistically but still indicated clinically if bleeding is present. If NHS won’t pay I would definitely fork out £100 for the test privately.

Having had similar they discharged with a 2 WW referral for sigmoidoscopy.

I thought the purpose of a FIT was to pick up undetectable blood, so if you know you’re actual or bleeding what’s the point?! Just get a colonoscopy to find out why.

This is not the only point of a FIT test I suggest you read what it is for before you give out bad advice.

Fresh blood bleeding is not screened by the FIT test. Read the research!

But the point is, in this circumstance the poor love needs a colonoscopy, so why bother with the FIT?

was there any update here @TangledandEmbrangled ?

@Harryfranks Thank you for asking.

Based on his blood results and the bleeding stopping, his referral was deemed non-urgent. Since then we get texts every couple of months asking if he wants to stay on the waiting list, but that’s it.

Thankfully the symptoms settled down and he hasn’t had any more bleeding. So still no idea what it was, possibly an internal polyp that ruptured. His energy levels have improved significantly and he looks a lot better now than he did in February, but we still need to try and work out what was going on and if it could happen again, so he will be staying on the waiting list.

Bizarrely, his repeat bloods were all ok, except for low calcium, so he was put on supplements, then re-tested for that and was back in-range.