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?

Ah goodness, my sympathies! Ours is through my employer too so I really feel for you - no way we could afford it on our own.

I find out of hours GPs are often far more helpful than regular ones - possibly worth a try?

@AngelsWithSilverWings That sounds absolutely horrendous, your poor dd!

I am going to be straight on to the GP as soon as they open tomorrow morning. First thing is urgent bloods, then the results should be 48 hours max (although my urgent bloods took over a week 🙄).

Dc hasn’t managed to do his stool tests yet, so can make sure they are done and drop them off when I pick up the bloods form. Then hopefully it can all be progressed urgently as results come in.

I am used to fighting for SEND support and have also battled the NHS for my middle dc who has a physical disability, but for some reason this has thrown me and I started doubting myself. I really appreciate all the responses confirming that I am not being unreasonable or over-anxious and this does need pushing.

@BunnyLake that’s what I am worried about, they just don’t seem to take things seriously enough when young people are involved. It’s lucky that you were able to go to A&E and advocate for yourself. It’s shocking how people are brushed off. So glad you managed to beat it and are ok.

I wouldn't be happy op. Get a second opinion.
Dh is a colorectal dr and I can imagine he would say the same. I'll ask him later.

@UpUpUpU I honestly don’t know what to think. He will find IBD extremely difficult to cope with, as he already has a fairly restricted diet, but there don’t seem to be many possibilities that aren’t awful in some way.

I am definitely going to be pushing the GP tomorrow though, we can’t wait weeks to even have the basic blood tests done, he needs seeing by someone who knows what they are doing asap.

@Weepixie thank you. I could do with a hug today.

My dc is a lot more independent that we ever expected they would be, but anything like education, health, money management, legal stuff etc and they need a lot of support. The complicating factor being that they think they are more capable and independent than they are and as in this case, only come to me when things have gone too far. I had been telling them off for staying up too late because they look so tired and have a history of gaming overnight, when the poor thing has been getting more and more exhausted as a result of blood loss. I feel like the worst mum on earth.

@Mynewnameis Thank you, that is very kind of you. If the GP surgery doesn’t sort things out first thing tomorrow I will be making sure we see a different GP for a second opinion. Problem being, they will only book appointments at 8.00 am and have none left after you’ve called at bang on 8.00, redialled 25 times and been 50th in the queue (which is my experience for three days in a row this week).

If he doesn't meet the referral pathway then sounds like Crohns / Colitis.

If it is IBD don't worry about restricted diets - that's not usually something you have to do with IBD ( if it's Crohn's some people do get put on a liquid diet for a while ) We have never had to restrict anything other than things with lots of seeds in and chilli/spicy food ( which DD still risks every now and then because she loves it)

If it's IBD UC and he is in an active flare then steroids are often the treatment followed by some immunosuppressants and something to treat the inflammation.

My DD now has infusions of a drug every 6 weeks and this has kept her well for two years now and she will soon be moving to an injection based treatment plan that she can administer herself.

Most important thing is to get him seen and his symptoms taken seriously.

Keep a poo diary everyday , you can download templates and there are even apps you can use. Show it to the doctor.

My son had very similar symptoms to your DC, right down to being pale with dark circles around his eyes. He had diarrhoea, abdominal pain, reduced appetite and the weight was falling off him at a rate of knots. The blood was pretty scary, but I think it might have looked a lot more than it was. He was - eventually - diagnosed with Crohn's Disease. He was 10 at the time. The calprotectin test will give a good indication of what might be going on. My son's first test was raised, not hugely, but enough to cause concern. The repeat test was through the roof. He is on a biologic now which has kept the disease very much under control for almost two years now. He has an injection (by me!) once a fortnight and bloods every 8 weeks.

Just to say, I completely understand how difficult it is to manage this situation with OCD thrown into the mix. My son has severe OCD - present (in its early stages) before his Crohn's diagnosis - and it has been a challenge to say the least. But just wanted to offer some solidarity with regard to the OCD/gut issue combo. I also relate to the spiralling thoughts as I was exactly the same. I really hope you get some answers soon. It's the not knowing and the waiting that's so bloody hard

GP here, OP; I agree with previous posters that this sounds much more likely to be IBD than bowel cancer or anything else. He does need urgent bloods and then referral. I think your plan to try to get the bloods done at the hospital is a good one. A FIT test is pointless in this scenario, I wouldn't focus on that at all.

This is likely to be UC or similar rather than cancer. It’s likely calprotectin will be high in which case referral should be upgraded to a 2ww.

Yeah, I literally just thought "This screams IBD". And then saw you'd said the same.

I agree with the posters saying it sounds like IBD, the symptoms sound nearly identical to mine 6 years ago.

I had a similar runaround with my GP and whilst I was waiting for tests ended up in A and E as an emergency admission. I remember thinking that all the stuff about A and E being overwhelmed couldn't be true because I was taken straight from the ambulance into a nice room all to myself with a nurse looking after me. Turned out they had taken me straight to high dependency and I was too ill to realise what was going on.

I was very close to having a large chunk of my bowel removed, luckily the treatment started to work after a few days and it wasn't necessary. I now self inject biologic medication every two weeks and have been symptom free for 5 years.

If I had been referred sooner as per the NICE guidelines I wouldn't have ended up in that state.

Thank you. Yes I was fobbed off terribly. If you take them to A&E make sure you say there is terrible stomach pain (even if there isn’t, although I was in excruciating pain). It’s just to ensure they don’t fob you off before checking, and that they should take a urine test. I hope it isn’t that but you just never know but at least they will hopefully get to the real crux of the problem for your dc. Age shouldn’t be a factor with them not investigating. I was sat in A&E in dreadful pain for over six hours but I’m glad I stuck it out. I never imagined I’d be admitted into a ward that evening and not be home again for another three weeks but they were amazing.

I would agree with @UpUpUpU My immediate thought would be inflammatory bowel disease and with blood loss like you’ve described and the abdominal pain, I would take them to A&E. They may need IV steroids and they sound potentially anaemic from the blood loss. Coeliac disease wouldn’t cause bleeding and you’re right, it’s likely your child will have a negative coeliac screen even if they are coeliac due to the fact they don’t eat gluten-containing food. Hope you get on OP and your child is better very soon x

@TangledandEmbrangled Dh said stool samples and bloods are correct first steps. Because need to know if infection etc.
I hope you can get those sorted quickly and an urgent referral.

Keep pushing. He needs to be seen.

(Dh did say he'd find a way to see someone if he was contacted directly via his secretary, but that's not the correct route. We have an autistic dd. ). Best wishes to you and your ds .

Dh followed up with.... could ask GP to call and ask for direct admission. But relies on things like everyone agreeing and a bed being available. Flexi sigmoid can sometimes be done quickly. (Like a less thorough than full colonoscopy.) Problem is if your ds can't tolerate it, he might need a general anesthetic.

Coming on to join in the general throng that this sounds very much like IBD, probably ulcerative colitis. I was also convinced my DD had cancer. The Crohn's diagnosis was a relief after that tbh, even though it's not curable.

Most people with IBD do have good times where their condition goes into remission, and there are lots of drugs available nowadays. My daughter is in adalimubab which is a fortnightly self injection given at home, after being trained at the hospital.

You can attend A and E if he's losing blood and it might speed things up a bit. We attended A and E and they did the initial bloods so that when we saw the gastroenterologist a few weeks later he could already tell that it was almost certainly Crohn's from the pattern of her blood results.

I’m going to PM you with some outing info.

@Mynewnameis Please thank your dh for me. The GP apologised and managed to get him in for bloods first thing Monday, so hopefully we should know what is happening referral-wise by mid to end of next week, depending on how long the results take.

i do think he would be better with a general for any investigations. Unfortunately he is terrified of having one, so we will have to just see how things go and manage things as best we can.

@MumofCrohnie Thank you, that’s reassuring to hear.

Thankfully the bleeding has slowed down for now. Blood tests are now Monday morning, so hopefully we should have a better idea of referrals etc by the end of next week if the results come through promptly.

How are things @TangledandEmbrangled? I hope you are making progress this week?

You can get a private fit test posted to you. Just look online for a reputable company.

We have loads of different options for having blood drawn there must be other services in your area not just your GP?

@Bubblegumtatoos fit tests look for microscopic blood that would otherwise not be detected. This poor lad is shitting visible blood regularly, he doesn’t need a fit test.