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AIBU?

Share your dilemmas and get honest opinions from other Mumsnetters.

Original poster

Im furious

67 replies

Dancingonmylonesome · 19/08/2020 17:34

Omg I'm furious. I've been put forward for an urgent gastro opinion as I've been going the docs for 2 years with diarrhoea. The last few months I'm getting up to poo in the night and I have left sided pain. I ended up in hospital and the doc thought I was in a Ibd flare up so asked gp to chase up gastro again. I've been given a date for an appointment urgently which I assumed would be a scope but I've had a letter today and it appears to be a telephone consultation. A telephone consultation when I'm practically incontinent in my 30s passing maroon stool??

OP posts:
Diva66 · 19/08/2020 19:03

@Dancingonmylonesome

Levels of inflammation in my stool are really high
I presume by this you are referring to your levels of faecal calprotectin.

The correct procedure is to have a consultation before deciding what tests and scans are appropriate. It sounds like you are being fast tracked. I know you say you had a private consultation, but your new consultant will still want to speak to you. I know it’s very worrying and the physical effects are so distressing but treatment will happen. I am still seeing a colorectal surgeon following a bowel cancer diagnosis and treatment. I put my trust in him and so far I’m doing well. I hope you have a good outcome.

missyB1 · 19/08/2020 19:05

Dh is a Gastroenterologist. He's doing mostly telephone clinics still, he's just spent all day doing them. He would refer you for an urgent scope after the consultation.
I'm sure they will get you in quickly.

SD1978 · 19/08/2020 19:13

I understand you're frustrated- it there is a process that is to be gone through. I understand you've already been seen before, I'm assuming that appointment didn't result in a scope, and was some time ago? There is a need for them to look at your notes, take a history, and devise a treatment plan. Whilst you will probably end up with a scope, it was never going to be immediate, u less you are willing/ able to go privately.

mumwon · 19/08/2020 19:20

imagine being given an annual heart consultation by phone -
pre covid consultant uses stethoscope to check heart murmur amongst other physical checks
fortunately we have a bp machine
ho hum
he will be seen next year with echocardiogram but that's the way things are -the risk for corona is still there

Lougle · 19/08/2020 19:24

To be fair, you could have diverticulitis, colitis, crohns, etc. Also, there is no direct correlation between fecal calprotectin and severity of disease. I had a FC off the scale (>6000) but when I was finally scoped, it was 'mild' proctitis. It's still IBD and I still suffer with it, but the consultant said that of all the 'itis' conditions of the bowel, proctitis is the best one to have.

I hope you get the treatment you need very soon.

SchadenfreudePersonified · 19/08/2020 19:32

@PotteringAlong

It's a waste of my time and their money I know its colitis so why dont they play ball and do the scope.

Because you’re not a doctor and if they took everyone’s word for what they had based on a google session they would spend £££ on unnecessary tests (although maybe save on medical school fees).

This!

The number of people who "know" what is wrong with them is roughly the same as the number of people who are wrong about what is wrong with them.

I now it's frustrating, and I have IBD myself, so I know how life-limiting it can be when you daren't even leave the house for fear of soiling yourself in public - but they will get you sorted out. you just have to follow the procedures.

Original poster
Dancingonmylonesome · 19/08/2020 19:35

I'm a nurse I've got more knowledge than most. I can hedge my bets on it being colitis. The appointment before we decided on a scope but covid happened 6 months later my symptoms are worse than ever

OP posts:
Alwaysoutofreach · 19/08/2020 19:43

If you had a private consultation, why didn't you proceed with private treatment?

Your a nurse, so you know the deal, everything needs a consultation, regardless of previous tests, findings etc.

Frustrating for you I am sure, hopefully you won't be waiting too long.

Pacif1cDogwood · 19/08/2020 19:55

Before you can have any kind of invasive investigation, say colonoscopy, you need to speak to a consultant and give your verbal consent. ALL of that kind of thing in the whole country is currently being done by telephone.
Don't waste your time and energy on being furious.
You are not being singled out or neglected.

If you have known IBD, high inflammatory markers, have has baseline bloods and stool tests done, you have plenty of symptoms from what you're saying, you'll be added to a scope list next WITHOUT needing to see somebody first.

Tistheseason17 · 19/08/2020 20:12

I don't know why everyone is so keen to "see" a GP during a pandemic. If you mention Maroon stolls - that would indicate blood in stools and as a nurse you know this an urgent issue. You could get a 2WW referral without the need to put yourself at risk of being seen by the GP who would still do the referral whether they saw you or not. You know the process, follow it - you are not a doctor.

MissConductUS · 19/08/2020 20:13

@Dancingonmylonesome

I'm a nurse I have all the signs and high calcoprotectin levels
I'm a nurse too and am on Entyvio for moderate to severe ulcerative colitis. Are you seeing any blood in the stool?

You need a colonoscopy stat. My gastro does them in his office. I don't know why but they seem very hard to get in the UK.

MaskingForIt · 19/08/2020 20:14

You’re right to be furious, but we currently have a National Covid Service not a National Health Service. You can thank the story voters for that.

Horehound · 19/08/2020 20:15

You still have to follow the procedure I'm afraid.. no point being furious.

Shedpaint · 19/08/2020 20:18

So much knowledge that you don’t know it’s calprotectin?

Don’t be ridiculous
They need a phone consult to confirm other health, weight loss, likely tolerance of a colonoscopy and discuss bowel prep and who will get you home if you have sedation etc. Let alone discuss the Covid procedure which may well mean isolation and a swab.

You don’t get to just say you know it’s this and pass go straight to the test

Can appreciate your frustration and Covid has had a huge impact for many awaiting urgent tests but just go with it and you should be sorted soon.

Hope it’s nothing that can’t be easily treated

QuestionMarkNow · 19/08/2020 20:22

Im with you @Dancingonmylonesome.
In other EU countries, they’ve gone back to normal face to face consultations a long time ago....

I’m worried about this move to telephone consultation. Consultants are going to miss things because seeing people is part of being able to make a diagnosis.

QuestionMarkNow · 19/08/2020 20:24

@Horehound

You still have to follow the procedure I'm afraid.. no point being furious.
But you can be furious about a procedure that put people at risk and is only there to cut costs again, at the detriment Of people’s health.
Polnm · 19/08/2020 20:25

www.mumsnet.com/Talk/am_i_being_unreasonable/3999661-How-many-people-have-been-failed-by-the-NHS-during-lockdown

This thread suggests that people are not being seen , I hope that you are OP

northprincess · 19/08/2020 20:36

@Wishforsnow

That's terrible, you poor thing. We really do have a terrible health service and you're being badly let down
Terrible health service? Really?
northprincess · 19/08/2020 20:38

Can you imagine what would happen really if everyone just diagnosed themselves!

InSpaceNooneCanHearYouScream · 19/08/2020 20:45

As you're so keen to point out, you're a NURSE, not a DOCTOR. The consultant will decide what test to do, not you.

Standrewsschool · 19/08/2020 20:53

Fairly standard to speak to a consultant prior to a procedure. S/he will then arrange what the most appropriate procedure for you would be. You may be a nurse, but the consultant doesn’t know that.

viques · 19/08/2020 21:05

you may be a nurse but the consultant doesn't know that

I wouldn't take money on that one standrewsschool

Veryverycalmnow · 19/08/2020 21:16

This must be horrible. Don't hold back in descriptions of stools, times, pain. They are bound to suggest keeping a diary of what's occurring, so please tell them you have a detailed record of the last 2 years and you are in need of serious action. Be as assertive as possible but remain calm and polite. Good luck.

DopamineHits · 19/08/2020 21:18

I know it's a real eyeroller when people pipe up with "Have you tried this random thing that helped me?", but I had suspected colitis and my GP who was also quite into nutritional therapies suggested taking a good probiotic while I waited for my consultation. And then in the end I didn't need the consultation. I still have the note - it's this kind Escherichia coli Nissle (Mutaflor, Ardeypharm), but I also took a course of BioKult. Of course it was only suspected, might have been something else.

MissConductUS · 19/08/2020 21:21

@Veryverycalmnow

This must be horrible. Don't hold back in descriptions of stools, times, pain. They are bound to suggest keeping a diary of what's occurring, so please tell them you have a detailed record of the last 2 years and you are in need of serious action. Be as assertive as possible but remain calm and polite. Good luck.
OP, there are some good smartphone apps for tracking IBD symptoms. Search for colitis in the app store. My doc loved having the data.