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.

When Dd had fecal calprotectin in the 400s it was coeliac disease.

I cross posted with NHS mummy84 but also very much agree with her post. I've seen patients who have a result of over a thousand repeat at less than a hundred a few weeks later. It's not because the test is unreliable in itself, we have really careful processes to check its performing accurately but the not uniform distribution in the stool and random sampling process can give really widely variable results.

Think it was in the 400s, was certainly raised.

plenty of women’s pain isn’t taken seriously though is it, it’s why the diagnosis for endo can take so long, i even follow a few GP with various social media who all say the same. That doesn’t mean that all GPS or medics don’t, but plenty of women don’t get taken seriously. I wasn’t just talking about medicine though, I meant in life, women’s pain doesn’t seem to be taken as seriously but I don’t want to derail my own thread.

ring 111 and tell them your story and you can not get an appt with your dr they will try and sort for you.
Try not to panic - you could also have a lactose intolerance or ceoliacs there are many things it could be. I have constipated ceoliacs it does exist.
last year I was so worried I had something - my stools were coming out long and thin and like the shape of a C as if they were passing something large on the way down. They were - an old stuck stool was creating that shape and it came out during the bowel prep for a colonoscopy.
Try not to worry too much.

You're right that receptionists shouldn't be giving potential cancer news but wrong about almost everything else. IBS by definition doesn't cause a raised calprotectin because it doesn't cause inflammation.

Based on the information given here OP wouldn't fit 2 week wait criteria in most places and a GP appointment could be helpful both for assessing any other symptoms that might make the referral more or less urgent and for her to understand the test results and to talk it through with a medically qualified person who knows her medical history.

@Namechangestimes100
Theres a thread on FWR board about it somewhere.

I could also go on at length about how women have historically been viewed in medicine and how biases continue including in research for new drugs etc. I work hard with my patients to provide advice and education about what’s normal and what’s not but I still see so many women who put up with awful periods, menopause etc that men just wouldn’t.

Having said that, I do think doctors generally and GPs in particular currently are getting a lot of flak for failings in the NHS beyond our control because of deliberate decisions by various versions of the government in the last 10+ years but i won’t derail your thread with that!

@Namechangestimes100 I am so sorry that your GP surgery is being so crap, and you should definitely try the practice manager/CCG route.

It's good that your CA125 was low (ovarian cancer survivor - I hope - speaking here) but there are plenty of other abdominal issues that might need investigating. At the very least you should be pushing them to do a full spectrum blood marker test.

I had a total hysterectomy (i.e. ovaries and cervix too) because of the ovarian cancer (total hysterectomy always makes me think of Total Wipeout). But I still have a lot of the symptoms you describe because I have an incisional hernia from the surgery. I am wondering if you should also ask them to check you for a hernia, especially if you have had abdominal surgery or a C section?

sounds like my auntie, shes just been diagnosed bowel cancer

@Breakfastofmilk in my hospital this would be a 2ww referral based on the information from the receptionist. If there’s a chance then we wouldn’t risk it and she’d have a phone call triage and colonoscopy. I’m not aware that we follow different processes to others but from your post I assume maybe we do. We’re certainly the same as our neighbouring trust.

@Breakfastofmilk is right.
You do need at least a discussion with a GP +/- examination to determine the best referral pathway for you.
And they are also correct that IBS doesn’t cause raised Calprotectin. You could have another reason for that (e.g medication) and IBS but that needs to be determined by further investigation.

@TeenLifeMum
see my previous post.
Where we are no +ve FIT= automatic rejection by 2ww office.
Even when I’ve written on the form the case has been discussed with lead colorectal consultant and they have said needs 2ww and no need for FIT!

Our gp calls automatically if results aren’t clear and so I’m surprised by the whole approach.

Your surgery has treated you terribly. Recently I had test results that could indicate cancer. When I rang for results I was told the GP had already referred me under 2 week wait, and I could have a phonecall with the GP that afternoon to discuss it. The GP called me back after 1 hour.

I'd definitely be complaining if I was in your shoes. If you've been told you need a GP appointment but no one will give you one, what kind of absolutely fuckery is that?

Not thoughtful @Thoughtful2355 and highly unlikely based on the facts

You should go to A&E. Even if you see the dr and they refer you it could take weeks or months to get to see the right people. After seeing my dr several times which led to an appt for a scan months down the line I couldn’t wait that long and took myself to A&E rather than wait. They did tests and admitted me on to a ward that same day. I was in agony so they didn’t waste any time once I got called (which did take a few hours).

I know, I even did say on the phone, well how come no one has called me about this and she said oh well, we just had the results in and that was that.

i’ll probably end up going private if I can’t get through tomorrow the results even say urgent gastro referral recommended

:(

Writing as a patient, not a doctor. Some of my blood tests (different issue, so absolutely not medical advice) have had bad numbers when there has been another factor such as an infection. Contact the practice manager or local hospital and explain that given what you have been told you urgently want follow-up. If you can, going private for screening/initial tests may be the fastest route.

I’m not especially in any pain right now though. I’ve had really intense burst of pain, and been vomiting from it and have taken myself to an and e before and by the time I’m seen the pain has started to pass, so nothing has happened. Can I ask what ended up being wrong?

Go private. GPs are useless idiots. Been complaining and going to them for the past few years about irregular heavy periods but was always fobbed off as they knew I had PCOS. Went private, got an appointment and tests in a week, turns out I have a polyp in the uterus.

Hope you get better soon and it is not something dangerous

Your surgery probably has an online enquiry form.

I would fill it in and state that the receptionist told you that your blood test indicates possible cancer and you should see the GP, but after trying 2 or 3 days, even including going to the surgery, you have been unable to get one. State you are concerned about being a given a possible diagnosis over the phone by reception and urgently need a GP appointment.

When you phone, if they tell you the appts have all gone, tell them that the receptionist told you your blood test was indicative of possible cancer and therefore you need an appointment as a matter of urgency and cannot be fobbed off any longer. Say how many times you’ve tried and given the disagnosis the receptionist told you, you will need to make a complaint if they are unable to give you an emergency appointment.

Ask to be put through to the practice manager as a matter of urgency.

@Namechangestimes100

diverticulitis can cause a lot of bloating and a raised calprotection, and it's quite common too. I used to work in an endoscopy clinic as a junior nurse and would see people come in alot for raised cal protectin and it turned out to be diverticulitis. in the absence of any other symptoms other than bloating please try and stay positive, like you said you've had this for years, and all your other bloods are fine, cancer will often disrupt your bloods and you wouldn't survive untreated cancer for years.

If you've had it months/years I doubt it's bowel cancer OP. But just go to any appointments etc to get checked out and sorted out. x
The receptionist shouldn'tve said that of course, especially as it probably isn't.