Any drs please? Super freaked out

[Namechangestimes100]

Sorry I’m posting for traffic.

Might be a bit graphic for some

ive had crazy crazy bloating and pain for months, maybe years. Bloating is so severe I gain 5/10 inches over my tummy, feels so heavy but not rock hard. Other symptoms too, mucus in stool, changing bowel habits, weight gain (not a lot 2kg but not able to shift).

managed to get through to my GP who did some bloods, fbc all clear great and a stool sample (no blood in stool or h pylori but elevated calprotectin- 350 to be precise) Receptionist called back, said indicative of ibd or cancer and to try and get a drs appointment for next steps… I’ve been calling and calling and showed up, both Monday and today, can’t get one, will obviously try again tomorrow but I’m starting to freak out. I’ve fallen into the google trap, and google told me that levels of 200-300 are more indicative of cancer than crazy high numbers

any medics here? I’m worried about bowel cancer, and ibd (but to a lesser extent) mums friend just died of bowel cancer because it was just dismissed for so long.

I do hope you can get an appointment at the GP's and be referred to a gynaecologist for reassurance. Someone I know of had bloating for a very long time, it turned out to be ovarian cysts, she's just had successful keyhole surgery.

If there is a possibility of cancer you should be on a 2 week pathway to see a specialist as quickly as possible. If you can I'd go into the surgery, stand in front of them and tell them that a receptionist has told you that you might have cancer and you need to be on the 2 week pathway now.

I've just been taken off the pathway, for which I'm very thankful. One set of results proved hard to get hold of - GP receptionist told me to call the hospital, hospital told me to call GP. So I did exactly what I said here, got to the front of the queue, asked for an appointment to get results. Was told I needed to ring in the morning so I announced that I couldn't keep doing that as I needed to know if I had cancer and have treatment start. That made the waiting room go quiet and got me an appointment for later that day.
It stinks Op, it really does. We shouldn't have to fight like this. How do more vulnerable people get the treatment they need?

Well the receptionist is v unprofessional imo!!! I’d go there at 8am and tell her you’ll wait. I’d also say if you can’t get me a dr appointment, I’d like one with the practice manager and make a complaint about her giving you this (potentially false) and very stressful ‘information’ for want of a better word, then not giving you an appointment for several days!!! If you get no where with the practice manager I would see if I can contact any other body actually i think her conduct here is that bad and she absolutely shouldn’t be dishing out information like this - and I use that word loosely as she is not your doctor!!!! You must be really stressed - try and talk yourself down. The receptionist is not your doctor and certainly not a medically trained cancer specialist… more a burnt out receptionist who is trying to divert calls for appointments. Don’t give up but equally don’t take her ‘info’ as gospel as it’s not. Xxxx

What guidance is that?

As a test in patients with symptoms it's often helpful because a negative test in someone with low risk and/or symptoms that don't strongly suggest bowel cancer has a very high negative predictive value (which means that very few patients with a negative test do turn out to have bowel cancer) so you can be confident in not referring for urgent follow up.

The difficulty is that there are lots of other reasons there can be blood in the stool (inflammatory bowel disease, diverticulitis, haemorrhoids) so a positive result doesn't mean cancer. In patients who are less likely to have cancer and more likely to have another bowel problem doing the test doesn't really help because a negative test may rule out bowel cancer but it doesn't give any information about anything else and a positive result also doesn't help because both bowel cancer and the other problems give positive results.

Do you have the Ask First app? I have got appointments through that, but I don’t know if it’s just for our doctors’ surgery. Hope all is ok OP

Not quite sure what your point is. Latest NICE recommendations are that FIT can be used in patents with high and low risk symptoms of CRC (at low FHb threshold). All patients (young and old) with suspected CRC symptoms should have FIT as a triage tool (due to low NPV as you say). If positive then colonoscopy is negative then either monitor symptoms or non urgent colonoscopy (to get a diagnosis). You should make sure you aren't excluding those under 40 from using FIT where it can be valuable in picking up CRC in the young.

It’s perfectly possible to have a raised level from inflammation or other things. No reception should give out advice or diagnosis so that is pretty odd but if Dr was concerned they would be booking you in already and putting you on the 2 week track for hospital tests/scan for confirmation (in my personal experience). As others have said go back for an appointment or get a private one (but you’ll def want to get a copy of your blood results to take with you to avoid more delay).

This sounds a so bizarre?
sorry you’ve had this experience. It doesn’t seem normal to have the results over the phone by a receptionist. In the nicest possible way - Are you sure that you’ve understood what they said accurately?
-You can rest assured that if they believe it to be a possibility of cancer they will refer you within 2 weeks (although there is a huge backlog so it may take longer atm) but at least there will be something in the pipeline.
-0800 appointments are for emergencies, while this is a really big deal, it isn’t an ‘emergency’ in the conventional sense so they shouldn’t have advised you to ring up for an emergency appointment after giving you your results. It also isn’t normal for a patient to chase their own results, be told part of them by a receptionist and not expect a follow up appointment. I don’t think it’s true that your practice will not have ANY appointments. I would assume, for test results, you don’t need to go in person, a telephone appointment will suffice. It sounds so odd that they would tell you you need a follow up appt but not book one for you
-unless you are a medic yourself, I would try and refrain from googling or jumping to conclusions, it just creates ‘worry’ until you’ve actually spoken to someone who knows what they are talking about.
-if you feel what they have told you is inappropriate, it isn’t a bad idea to speak to the practice manager and/or put a complaint in? What you have described sounds so peculiar, I would assume this isn’t how they normally operate.
good luck, hope it all sorts out.

Well I'd be gobsmacked if a gynaecologist saw someone with a raised calprotection which is a BOWEL test. Keyboard doctors eh. Who needs actual doctors.

I cannot understand why GPs can't go back to pre-Covid arrangements, when the rest of the fucking world has!!
in what way? We are currently providing 20% more appts with 20% less staff than precovid. If we went back to our previous system of prebooking FYF appts or sit and wait for urgent ones you'd be waiting 10-12 weeks for an appt ot maybe 8 hours for an urgent one. If at all.
Practices can't recruit and are handing back contracts. In my area 15% of practices are at risk.
I would love to hear your solution please. In my over 20 years as a GP partner I have never known anything like it and am ready to throw the towel in myself and let my practice of over 10k close? I spend hours and hours every week discussing solutions and options. I'd really love to hear yours?

“I cannot understand why GPs can't go back to pre-Covid arrangements, when the rest of the fucking world has!!”

I’ve just left working in a gp surgery (admin role) after several years. The surgery I worked in have been seeing patients in person for ages, including during covid for urgent cases. In that time, the surgery has increased its clinical staff by appointing advanced nurse practitioners, pharmacists, paramedics etc , partly to offset decreasing gp numbers, and partly to tap into their skills.

However, also, in that time, patients have got more demanding (not the op). Covid has worsened the situation. For example, you have a cohort of young parents who would have discussed coughs and colds at baby classes, who now turn to the gp every time little Johnny has a sniffle. Plus there’s been a huge increase in mental problems.

Sorry for the derailment, op, but I’m fed up if the ‘gps are useless’ rhetoric, where in my experience, they’re all working their socks of.

As well as the advice above I’d be contacting PALS and copying in my MP.

This x1000.
Our clinics are rammed for weeks ahead including picking up work from secondary care who can't fit them in for various reasons. "See your GP" seems to be the default atm.
We have lost five members of staff since January yet statistically dealing with more patients than before COVID.

It’s shit isn’t it, I’m on the two week fast track due to symptoms I’ve had for months which have been ignored, that 2 weeks is now 5 with a telephone appt next week, how a telephone appt is going to do any good is beyond me!

i Know what the receptionist told me, maybe she thought she was helping I don’t know. She read what she saw on the screen re results.

this practice is quite bad for things like this, results often get forgotten and referrals the same. The drs are ok, but there’s a lot of short cuts. Probably because there’s 2 gps 2 nurses and over 10k patients.
there’s not been pre bookable appointments since before covid phone call triages have actually made it better, it’s weeded out the sniffle calls . You have to call on the day but because of the sheer volume you just can’t get through.

I find with our GP, if I email a complaint to the practice manager an appointment is magically found.
I would say how worried you are, it's ridiculous for them to call and say you need to urgently get an appointment then not offer you one there and then.
Seems GPs need to employ joined up thinking.

I’ve got a private gastro appointment now for beginning of April, soonest appointment available. Likely do some scans and a colonoscopy (not that then and there).

im still terrified as I don’t really think I’ve got the symptoms of chrons or uc, but I guess I could have it mild?

ive had periods of intense pain and gone to a and e and they’ve found inflammation markers high, but not scanned or done anything so I’ve been in a bed for days and then the pain calms down so I get discharged. One time they scanned and saw my appendix was thickened but as the pain was going away they left it, the thought was I could have chronic grumbling appendix and whilst I get some bloating with that it’s not as extreme as the past few months. I’d add pictures but it’s really outing

You sound charming. So your tantrum entitles you to jump the queue over the other 10k patients right?
They give you an appt just to shut you up because complaints are just a ballache especially petty vindictive ones like this taking time away from patient care and practice management.
I'd love to hear you views and planning on " joined up thinking " whatever that means? What is your experience in GP management and could you clarify what exactly you would like us to do?

Lots of advice on how to get an appointment at the GP and i will complain after this is settled, but I’d still be nervous if I knew I had something wrong on my tests and couldn’t get an appointment.

so plus side, her telling me, even though it’s scared me, prompted me to get a print out of my results and go straight private as I don’t even need a referral through my insurance package.

my reason for posting, and sorry if this wasn’t clear, was to almost ground myself as I started panicking a bit after her telling me could be ibd or even cancer, and the googling confirmed, I started to spiral a bit (family history and all that). I don’t know, I don’t seem to have Crohn’s symptoms do I? (I don’t really get that urgency of bowel movements and no visible blood). I started to worry about Cancer because of how long it’s been going on for, and time being of the essence in cancer

OP I would try to get a "symptomatic" FIT test either via GP or privately before your gastro appt. It's a stool test you do at home which needs a tiny sample of poo. If it's 'positive' the GP will have to refer you under the two week rule to gastro or colorectal at your local hospital anyway.

Did you mean to be so rude?

As I said, sometimes its the only way to get anywhere. The OP has been told she has potential cancer markers yet they couldn't use common sense and make her an appointment when they gave the results. What is the point of a GP saying she needs an urgent appointment, yet leaving her to try and get an appointment with every other person as normal?

No wants to have to complain, but as someone who is carer who constantly has to try and wade through desk staffs poor attitude and blocking of calls and appointments, you have no choice. We have a cancer two week pathway in this country, yet the OP has been hugely let down.

How has booking a GP appointment become like trying to book concert tickets over the phone in the 90s??!

This country is going backwards.

No blood in the stool test - sounds like a QFIT has been done and actually wouldn't help at this stage anyway. Of all the diagnoses it sounds most like terminal ileal Crohn's ( it can be mild) with pain. cramping, a ' ? thickened appendix' on a scan plus intermittently raised inflammatory markers.
You need a small bowel MRI and a colonoscopy. PM me if you are worried I can give you more info.

@sleepwhenyouaredead They never did the FIT test, I meant no blood that I could see. Would the pain for that be sort of a full uncomfortable ache, truthfully the squishy bloating is the biggest sign that and a lot of mucus. I’m super worried

Don't be too worried about cancer it sounds much more like inflammatory bowel disease which is very treatable ( as actually is cancer) I know I am a random person on the internet but I deal with this all the time
Good luck