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.

What sort of ibd do you have? How was it diagnosed?

I agree with this
also write and ask for an explanation

She shouldn't have, for obvious reasons. I would mention that to the doctor or practice manager (whoever you speak to first).

My UC is well controlled with medication at the moment, but when it's active I get pain, frequent toilet trips and urgency, blood and mucus in stool. I've been anaemic from the blood loss in the past too. It's not pleasant but there are plenty of treatment options. Crohns and Colitis UK are a great source of information, if you wanted to know more about IBD.

Does anyone know if calprotectiin can indicate ibs not ind my googling is giving me different answers

Just go in tomorrow and ask to speak with the practice manager. Please do not consider getting medical advice on Mumsnet, no matter how good intentioned people are.

It's usually used to differentiate between IBS and IBD. It shouldn't be raised in IBS.

You could be waiting ages the NHS route at the moment. If you have private insurance or can afford to, I would ask for a private referral - be prepared for your GP to charge you for that by the way.

I had a stomach issue last year and I got a referral and was seen privately by a gastroenterologist within a couple of weeks and then had an endoscopy and colonoscopy privately a couple of weeks after that. I appreciate not everyone is in the position they can do that, but to find out what’s going on (because something clearly is with the bloating and calprotectin levels) it may be worth it to you. Negative blood in stool is very encouraging, as is your blood test results, but this does need to be investigated.

I have Crohn’s Disease & it was the pain I had in my right side that started my journey, ( was always told since a teenager I had IBS) I had scans & a massive narrowing of the small bowel was found, followed by colonoscopy. I had surgery to remove a large section of my small bowel & when it was examined discovered that I had been suffering from Crohn’s from early childhood & it took till I was 46 to actually get diagnosed.

Some gp services are terrible at the moment and surely something has to be done.

In comparison I have a similar situation with worrying symptoms over the weekend. I went for an unrelated checkup at the gp this morning. While I was there I asked to make an appointment for a smear. They could book me in for noon. By 12.30 I had seen a nurse, had a smear and was referred for a two week consultation at the hospital. I feel incredibly fortunate right now.

I’ll do that, I just needed some small reassurance or grounding in the interim.

im very lucky I have some cover through work, was hoping not to have to dip into it as the excess is quite high but needs must

If the GP were worried you would have been TOLD to book an appointment and would have been given one PDQ. You should complain about the receptionist, it absolutely is not her job to suggest possible diagnoses (did she or did you Google ?) I’ve never had a receptionist tell me anything other than ‘GP wants to speak to you/ urgent/non urgent.

I’m a GP…
Calprotectin is produced at sites of inflammation in the gastrointestinal tract. That is commonly due to IBD but in theory can be caused by cancer too. It can also be caused by some medications causing irritation leading to inflammation, commonly drugs like Ibuprofen although I wouldn’t generally expect the Calprotectin to be at that level from medications.

The symptoms and result you’ve reported could both be due to IBD and the fact that the rest of your tests (your blood count showing you’re not anaemic for example) is also reassuring. You don’t say how old you are but generally speaking IBD is more likely in younger people (under 50s) than older ones. There are of course sadly exceptions to this.

At a practice/practical level my practice process would be that on receiving a result like this the doctor actioning it would ask reception to book you in for an urgent appointment (within the next couple of days) to discuss the results and referral. What the pathway for referral is varies in different areas. Where I work our 2 week wait pathway (for urgent investigation of possible cancer) will not see patients on this pathway if their FIT stool test (test for blood in stool) is negative and so patients who we think may have IBD have to be referred on a different urgent pathway, although due to massive waiting times (thanks to Covid and years of underfunding) even that can be a couple of months. You mention you haven’t had a FIT sample sent and doing this might be helpful. I wouldn’t delay a referral waiting for it to come back but if I referred you urgently and it was then positive I would contact the hospital to let them know it was positive and to ask them to move you to the 2 week pathway and hopefully you would be seen sooner.

In terms of next steps I would contact the practice tomorrow and if you are told again to call back another time I would ask what action the doctor has requested based on your results and go from there. If that is not productive then you could ask to speak to the practice manager or how to contact them. You could also email the practice email address and mark it for the attention of the practice manager.

Fundamentally the NHS is a complete mess. I strongly believe in it but waiting times are so long even for 2 week referrals and urgent care that even though i feel it is completely wrong to have to do so if you have private insurance or the means to see someone privately it might be worth it.

I won’t say don’t worry because it’s natural that you will but (with limited information on Mumsnet!) from experience raised Calprotectin is more consistent with IBD and again where I am is not included in the assessment for cancer pathway.

Best of luck OP.

How terrible! Women’s pain is never really taken seriously is it!

ive been told the same (previously) but based on no investigation

Receptionist called back, said indicative of ibd or cancer

What the actual hell? The receptionist has no business saying stuff like that without a confirmed diagnosis. No wonder you are freaking out!

This is literally the only response you should be reading

Thank you for such a thorough reply! I’m 33 btw. Only 2 poop samples were done, one was h pylori and then the other calprotectin. I don’t know why FIT wasn’t ordered? I definitely couldn’t see any blood on scooping (grim sorry)

All will be done but for now I just wanted some guidance as I’m scared

I do calprotectin tests (I'm a scientist in the lab).
With calpro levels above 250 you should be put on the 2 week referral list. You will have a colonoscopy.
The test can't differentiate between any condition that causes inflammation of the bowel. It's really only used to differentiate between irritable bowel syndrome and inflammatory bowel conditions.
There are some medications that can falsely elevate results such as NSAIDs, ibuprofen etc.
You really can't determine what condition is causing the inflammation by the numerical value of the result. All it shows is a level of inflammation, even then as a test, it's not very accurate due to it being a faecal test. Calprotectin is not evenly distributed in the stool, it coats the outside of the stool as it passes through the intestine, in a patchy fashion! For this reason, sometimes patients are tested twice, two weeks apart.
If you want any more info, I'm happy to help.

Yep I had no investigations for the supposed IBS for over 30yrs, but then had a bad spell, new gp tested, found I had helicobacter pylori, treated that but it seemed to kick off everything else, landed in via a&e because i collapsed with the pain & fortunately it was a Gastro consultant that was on duty on the admitting ward, she checked my scans & instantly said IBD, was so thankful for her that day as she put me on her list for further investigation & 10yrs on she is still my Gastro consultant.

I work in a lab where we do FIT tests and calprotectin tests. What Faffettea has said about the calprotectin is spot on.

We wouldn't normally recommend doing a FIT test in younger people (<40) who are more likely to have IBD or IBS than cancer. IBD and cancer can cause bleeding and positive FIT tests so it doesn't really make anything clearer if it's positive or negative, although in some places it might help jump you up the queue for a more urgent colonoscopy, which the test you need to diagnose both IBD and cancer.

Super interesting! Thanks for commenting! Can things like an upset tummy or food poisoning or appendicitis cause it or anti biotics? Just curious :)

You don’t need a gp appointment. Call receptionist and request referral for bowel cancer investigation on the 2 week wait pathway. The gp should have actioned this based on the response and no receptionist should give potential Cancer news so follow up with a complaint to the practice manager.

it likely is ibs but that’s not for the receptionist to decide!

Never is a pretty broad generalisation and just causes anger and a combative approach to medical care. I consult maybe a 100 women a month at least and I absolutely take them seriously. As doss every GP I know. We consult a LOT of women with pain abdominal or otherwise.

A raised calprotectin is highly unlikely to indicate cancer. Most likely to be IBD (not IBS) and Crohn's rather than colitis given your symptoms and lack of visible blood.
Other causes are use of non steroidals like aspirin and ibuprofen, a viral or bacterial gastroenteritis and rarely coeliac disease.
You need an urgent referral to gastroenterology to make a diagnosis but the risk of cancer is very low.
I do work in this field but don't want to out myself completely!