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’m not a GP, but I work in general practice. As with @Faffertea where I am, you have to have a positive FIT test to be referred down the 2 week pathway - this apparently has come as a mandate from the Joint Royal Colleges of Gastro and whilst not a NICE cancer guideline, it’s being backed by NICE.

the reason being , as written above, a negative FIT means a really really low chance of bowel cancer, and referring people down the 2 week pathway meant that people with a really low chance of cancer were being subjected to a colonoscopy which has its own risks.

that said, every area is different, and you certainly shouldn’t be given that response by a receptionist. But as above, in my area, you have to have a positive FIT test to be referred down the 2 week wait pathway.

@Namechangestimes100 sorry I thought bloating was your only symptom but bloating and pain is VERY common in diverticulitis! So hopefully it's something like that where yes it's unpleasant but very treatable.

Really? This is the Nice guidance on suspicion of lower GI cancer. OP is under 40, hasn't seen any blood in her stool and hasn't had a test for occult (not visible) blood, isn't anaemic and hasn't lost weight. She doesn't say if she's been examined but she also doesn't say anyone has found a mass anywhere. I really can't understand what the criteria would be in your hospital that she would fit.

@Namechangestimes100 I'm absolutely not downplaying your symptoms. I can totally understand why you're worried and want further investigation and I hope your GP surgery will be more helpful tomorrow. I don't think it's likely to be cancer but I do agree you need proper investigation and a better plan than "could be cancer but you can't have an appointment to discuss", that is not right at all.

No advice but so sorry to hear how you have been treated OP. Actually I DO have advice - get a private appointment asap.

Would it cause mucous too? The bloating is extreme, and can linger for weeks, I easily look 6 months pregnant with it. It’s So profound in fact I actually forget that I’m not hugely overweight with his big belly, becuase it’s not like rock hard bloating, it’s becomes almost marshmallow like

Nope no one has seen me In person at all so no one has touched my tummy.

Thats really reassuring thank you!

Bloating
Pain
Dodgy bowel habits
Raised CA125

Can all be indicative of endometriosis. 10% of all women have endometriosis but GPs as a whole are woefully under informed.

Have a Google and see if you recognise any of the other symptoms.

Note that severity of endo does not necessarily correlate with pain levels or number of symptoms.

The CA-125 is not a reliable test for ovarian cancer. My test was normal but I had a 10cm x 6cm cancerous tumour on my left ovary.

My ca125 was normal, it was my cal protectin that was raised.

i don’t think I had endo, I’ve not had a consistent menstrual cycle since 2018, so it’s hard to think that far back but I didn’t have debilitating pain or excessive bleeding as an adult, teen sometimes but not as an adult.

reason for no periods, I conceived my first child jan 19, breastfed and only went an caught the first egg at 18 months pp to have my second and haven’t had my cycle back from that due to breastfeeding

Do they have an online message system? My GP you can send a message and they’ll read it a lot quicker than they’ll answer the phone. You can say you’ve tried via phone and in person and ask that they please call you back with an appointment ASAP. Every time I’ve used the online messaging, I’ve had a response within an hour or less

i hope you’re doing well now!

my ca 125 being normal I think was the nfa for anything gynae, esp with the raised cal protectin

I'm really glad you found it reassuring.

Not that I can see no :(

Also to provide reassurance that when I had high calprotectin it turned out I had a large polyp. I found it crazy that just one polyp could cause such havoc, and definitely imagined it was much worse. Definitely relate to the bloating and the mucus. Lots of it! I also had bleeding which is a red flag, and lots of urgency for bowel movements. By the end I used to have to go 7 or 8 times before even starting the day.

I was in my early 30s so they didn't say it was probably cancer ("you're too young and healthy!") and thought it was likely IBD.

Definitely do follow up, and if it is a polyp (or several) you'll then get regular monitoring as they can turn into cancer but over many, many years.

It's been 8 years for me and I've not had another since.

I wish you all the best

@Namechangestimes100 yes it would cause mucous, it's basically pockets of inflammation (diverticulosis) and sometimes infection (diverticulitis) in the bowel where food gets trapped and causes ulcer like wounds on the bowel. In response to try and heal the area and as a response to whatever is going on the bowel will produce excess mucous.

Similar to that I have endometriosis in my bowel (my sigmoid colon) and will often have mucous in my stool, that's the same reaction occurring for the endo as well, not saying you have endo but that causes me bloating and a lot of pain, however I have been diagnosed so i know why it happens .

Nothing worse than someone telling you something liken"its IBD or cancer" then having to wait. So sorry you're going through that. When you have answers and are in a better frame of mind please follow up on that receptionist! Out of order!

SIBO can cause those symptoms and elevated calprotectin, so it doesn't necessarily mean something really serious is wrong. I hope you manage to get through to your GP asap, it's shocking that you were told that over the phone

Haven’t read whole thread, but also think it’s unprofessional of the receptionist to inform you of a possible cancer diagnosis. You must be worried sick.

Try tomorrow to get an urgent appointment, and if not, speak to practice manager. They shouldn’t keep you waiting on this. Incidentally, the phone call will be recorded so there will be evidence of what the receptionist said.

Hoping it’s nothing serious and wishing you well.

I am not a medical professional - so best get your GPs advice. But I had a quick google of cal protectin and it seems to indicate possible IBD - but could be infection or other more transient things - but you definitely need to see your doctor as soon as you can mainly to put your own mind at rest and also so that Mumsnet are not diagnosing you!

Also, I have worked in cancer services. The raised calprotectin in itself with a negative FIT test, your younger age is not the big red flag - but as I said I am no medical doctor and your symptoms and everything else would have to be professionally assessed. I say that to just reassure you. Also bowel cancer has many treatments which are effective for many, again just saying that to bring down your stress levels.

Take it easy and see a Doctor.

I had similar symptoms and have recently been diagnosed with ulcerative colitis (possibly Crohn’s but gastro consultant isn’t 100%). I’m currently in a flare and my calprotectin last week was something like 750. I had a positive FIT test and panicked about cancer but in my case I have IBD. My GP never mentioned calprotectin being elevated with cancer (although I don’t know that for a fact so don’t quote me on it!) and less so in IBS.

As others have said, it’s absolutely awful that the receptionist told you that. Any time I call my GP surgery for results all the receptionist says is that I need to make an appointment with the GP to discuss the results or that everything was clear. Definitely no potential diagnoses.

Waiting for results is so stressful. I hope you can get some answers that will reassure you soon.

Yes don't take no for an answer! So sorry OP xx

Close relative of mine had very similar symptoms including a stool sample negative for cancer , seen by consultant who thought was likely IBS and it turned out to be colon cancer. Don't panic though because cancer can be treated.

As others have said, speak to GP urgently.

If you can afford it, organise a private stomach/bowel/colon scan asap. If this shows anything requiring urgent treatment you will be admitted into A&E NHS.

There is a lot of treatment to manage cancer so please don't panic. It doesn't mean its terminal. Everything from chemotherapy to sections of bowel being removed. There are lots of treatments and options if it is bad news. sending you best wishes.

I'm not an expert at all, and just speaking anecdotally, so please feel free to take this with a pinch of salt/ignore.

After upwards of 40 years of being told I had IBS, I lost quite a lot of weight for no obvious reason so was referred to gastro. No treatment had ever worked, and my symptoms were getting worse.

I had a colonoscopy a couple of years ago, and finally that revealed that I have a condition I'd never heard of, severe bile acid malabsorption. It produces loose, greasy stools, with frequency, and urgency. I was sent for an ultrasound first and that was sufficiently concerning for things to happen quite quickly - I was barely in the door home before I got a phone call from my GP about the results of the ultrasound!

Just wanted to say, there's a range of conditions, so don't panic. However, this lacksadaisical approach from your GP isn't good enough, and you should contact your practice manager tomorrow. One of my DC is a teacher, and can't ring when they deign to accept calls, and that's what she had to do - I did the same to get an appointment.

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

@Namechangestimes100

My mum had rectal cancer a couple of years ago. She wasn’t bloated, didn’t gain weight - the biggest symptom I remember was blood in the stool. Lots of blood.

It was operable, she had a stoma, stoma was eventually reversed and she pretty much back to normal now.

The waiting for appointments and diagnosis is horrible. She’s had breast cancer too - and a recent scare which turned out to be fine. I tried not to let my mind race until I knew, and started to become more impervious (she’s had so many worrying appointments/outcomes to wait for) - but it’s really, really hard.

Interesting as actually the guidance is that it's the under 40s who absolutely do need a FIT test to help rule out bowel cancer if they have symptoms bowel. In fact, FIT is a very good test for this age group. A positive test should fast track you for a colonoscopy under the two week rule.

Could it be Irritable Bowel syndrome or Crohn’s disease.
Your symptoms are very similar to a friend of mine and she had IBS but was tested for Crohns aswell.

If I were you I’d sit in the surgery and grab an appointment that someone hasn’t turned up for.
Good luck tomorrow.