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Colonoscopy using propofol for "enhanced sedation"?

118 replies

StJills360 · 23/06/2024 23:28

Hi - has anyone managed to successfully request this from the NHS?

I have been called for a colonoscopy following a positive FIT test - they seem to be offering only 3 choices to manage my anxiety of the process: nothing, gas and air or midazolam/fentanyl. I have avoided anything invasive medically for many years (inc. the dentist) due to extreme anxiety so wish to be unaware of the process, hence the deeper sedation request. According the BCSP guidelines, a small majority of patients need enhanced sedation using propofol and the BCSP provider should make reasonable efforts to provide this. It all seems to hinge around whether an anaesthetist is present or not as propofol cannot be administered by the endoscopist.

I don't feel I can proceed with the test with what they are offering so will cancel the screening appointment. As I have no symptoms, I feel there is no rush here and can see if I can find a private service.

I know the vast majority of people are fine with what's being offered - but unfortunately, feedback from several colleagues has highlighted that when this doesn't work, the lack of an anaesthetist means you just have to grin and bear it as they can't give you anything else. I don't want to take this risk, especially as to get me into the room into the first place will be challenging enough (hope the GP can help with that). You'd have thought with the modern medicines available that having mentally endure a procedure a process that documents how well it was "tolerated" was a thing of the past.

I fully understand the importance of this and the risk if I don't proceed - but the primitive part of my brain wont let me. It is worrying my DH (he has found this a breeze by comparison) but this has not changed my decision.

Hopefully someone else has experienced the same and can offer some advice!

OP posts:
StJills360 · 21/07/2024 00:30

Thank you for sharing!

I was thinking earlier - in my mind, my reluctance isn't irrational. The late Dr Moseley did a 3-part documentary on Pain, Pus and Poison. In "Pain" he mentions that before "modern" anaesthesia patients had to endure terrible pain and there was a view that pain was good for you! That was the accepted norm at the time. I guess the trend towards "concious sedation" is the accepted norm now. But fast forward 10-20 years - who knows what will be happening. I guess the definition on what "invasive" means will differ as well - IMHO it should be defined by the patient themselves...

Pain Pus And Poison The Search For Modern Medicines Season 01 Episode01 UK

Pain has a profound effect on our bodies - when we are experiencing it, millions of nerve cells deep within our brains are firing, telling us 'it hurts' - an...

https://www.youtube.com/watch?v=2hTZNDyLPLk

OP posts:
Destiny123 · 21/07/2024 01:50

3am and can't sleep on hol with awful WiFi so haven't read all the replies but....

Anaesthetist - most people are totally fine with endoscopist admin fentanyl/midazolam. V v occasionally they're not. You just ask them to stop and they'll rebook on a anaesthetic list for us to sedate you instead (but you'll have to go through bowel prep again). There are regular GA lists but they're normally for procedures that can't be done under sedation or learning disabilities etc failed sedation is occasionally a reason to be listed but rare as the vast majority are totally fine with fent/midaz (they're our default drugs in a lot of sedations like getting your heart shocked back into a normal rhythm so hardly mild

Diazepam and midazolam are nothing alike and can't be compared at all

You can still have recall with propofol .... we consent everyone for it.

Privately you have a bit more say in drugs but there's nothing to stop an anaesthetist using fentnayl/midazolam in the private world if that's their default for the procedure as they're v good drugs that work

Destiny123 · 21/07/2024 01:53

StJills360 · 21/07/2024 00:30

Thank you for sharing!

I was thinking earlier - in my mind, my reluctance isn't irrational. The late Dr Moseley did a 3-part documentary on Pain, Pus and Poison. In "Pain" he mentions that before "modern" anaesthesia patients had to endure terrible pain and there was a view that pain was good for you! That was the accepted norm at the time. I guess the trend towards "concious sedation" is the accepted norm now. But fast forward 10-20 years - who knows what will be happening. I guess the definition on what "invasive" means will differ as well - IMHO it should be defined by the patient themselves...

Endoscopies aren't "painful" they're uncomfortable in the sense your bowel is filled with carbondioxide and inflated so there's a wind type pressure but they're not painful. The biopsies are like under 1mm diameter. I had mine taken with zero sedation, couldn't have sedation as I was working the night shift (and was kinda nosey so wanted to watch), didn't even slightly feel them beyond a v slight tug, wouldn't remotely describe as pain

Destiny123 · 21/07/2024 01:59

HipHopanonymous · 07/07/2024 05:32

I went private for my endoscopy and colonoscopy - I also have pretty big fears but on top of that I don't tolerate fentanyl very well. Discovered that after my gallbladder operation, I couldn't move for nine hours after fentanyl - never again!

The consultant asked if I wanted propofol - I said yes please. The anaesthetist, however, explained that even with propofol I would have to be semi-aware for the endoscopy as I needed to breathe on my own. I was petrified because I wanted to have no awareness whatsoever, but it ended up not mattering. I was aware of some things during the upper endoscopy but I didn't care at all, and I don't remember a thing about the colonoscopy even though they told me I'd indicated that I was in pain throughout.

Good luck OP, I know what it's like to be more frightened of the medical procedure then of the condition it's seeking to treat.

Fentanyl doesn't paralyse anyone - that doesn't make any sense it's a painkiller, we give it awake all the time.

You can have inadequate reversal of intraop paralysis which shouldn't happen but occasionally occurs, but that's nothing to do with fentanyl it's completely different drugs

Destiny123 · 21/07/2024 02:06

StJills360 · 02/07/2024 23:06

Ok, I managed to talk to the BCSP - as expected, I imagine you need to go through a few hoops to get anywhere near the enhanced list. They did admit that it's difficult for anyone else to appreciate your own level of anxiety so did understand. I turned down the appointment offered next week as it was far too soon for me at this stage and they agreed that was sensible. I mentioned I needed to see what my GP can do for me medication wise just to get me into the room - but the next appointment offered I will also have to cancel as I can't get an appointment with my own GP for 3 weeks or so. I got the impression they would help me if they could but they are constrained by protocol. They have suggested the midazolam/fentanyl, gas and air AND whatever my GP can through at me - that's either good news or admission that it's not that good depending on your point of few.

I spoke to a private a clinic and yes they can offer enhanced sedation - but the before and after isn't quite the velvet glove I was expecting. I haven't wrote them off just yet as I suspect (for instance) I can ask the anaesthesiologist to use gas induction etc. - it's just that that isn't the normal process as so isn't mentioned by default.

It seems that the system just isn't quite joined up enough - if you request a procedure a certain way due to fear then they literally deal with that request aspect only - you then need to research things yourself and ask if not offered - no one else is joining any dots.

I am hoping my GP is willing to help as per some PM suggestions have made else I will keep kicking this into the long grass.

Gp won't be able to do anything but write a sympathy letter

You need to speak to the gastro or General Surgery secretaries to get a message to the endoscopists to request a GA list

We catergorically won't give you a gas induction for an endoscopy, even if you have propfol it's given through the drip in your arm at low doses so you continue to breathe throughout. The only gas inductions we do in endoscopy is in sub 5yo kids that can't tolerate being cannulated. We don't do them in adults as it's a remote environment for us away from colleagues that can help in emergencies and in adults gas inductions are waaaay more risky

Destiny123 · 21/07/2024 02:07

StJills360 · 05/07/2024 12:32

Agreed, GA is too much of a risk - but we do have loads of other options that aren't GA - it's just that a anaesthesiologist (rightly) needs to administer it.

I read somewhere that someone was offered a spinal block as a solution. For me, that totally misses the point - you're still fully aware of what's happening, but you can't get away if you need to - double torture!

I am glad that midazolam/fentanyl was enough for most of you. The fact that for some (and it's probably a small percentage) it didn't is what scares me (as well as anything invasive really...).

We don't do spinals for scopes in the uk. Ever

Destiny123 · 21/07/2024 02:10

downday24 · 06/07/2024 23:20

Usually the anaesthetist takes over ventilation with bag and mask with propofol so not sure how easy that would be positionally wrt colonoscopy access PR

Not in endoscopy we don't. We keep people breathing spontaneously with nasal oxygen. In emergency endoscopies for like massive gut bleeding we put a tube into their lungs, ventilate with the machine and the endoscopy scope goes into the stomach via the mouth next to our tube

Destiny123 · 21/07/2024 02:13

SlugGloves · 24/06/2024 03:02

They do entire breast implant surgeries, face lifts and tummy tucks under twilight sedation (fent/midaz) these days.

IV Midazolam is so much stronger than a diazepam tablet.

Not in the UK we most certainly don't!

SlugGloves · 21/07/2024 06:51

Destiny123 · 21/07/2024 02:13

Not in the UK we most certainly don't!

Umm yes we do. Kat & Co in Birmingham do the majority of thier procedures under twilight.

Destiny123 · 21/07/2024 07:22

SlugGloves · 21/07/2024 06:51

Umm yes we do. Kat & Co in Birmingham do the majority of thier procedures under twilight.

Ok, ill rephrase what happens in the private cosmetic land wouldnt be done in the nhs then (makes me somewhat nervous unless it's an independent anaesthetist doing the sedation.... even so midaz wouldn't be my choice of drug for prolonged administration from the groggy hangover effect, would do propofol over that any day)

SlugGloves · 21/07/2024 07:26

Destiny123 · 21/07/2024 07:22

Ok, ill rephrase what happens in the private cosmetic land wouldnt be done in the nhs then (makes me somewhat nervous unless it's an independent anaesthetist doing the sedation.... even so midaz wouldn't be my choice of drug for prolonged administration from the groggy hangover effect, would do propofol over that any day)

Of course it’s an anaesthetist.

Destiny123 · 21/07/2024 08:09

SlugGloves · 21/07/2024 07:26

Of course it’s an anaesthetist.

V weird choice of drugs then, sounds more the that of a sedationist

Pery · 21/07/2024 13:12

Destiny123 · 21/07/2024 01:50

3am and can't sleep on hol with awful WiFi so haven't read all the replies but....

Anaesthetist - most people are totally fine with endoscopist admin fentanyl/midazolam. V v occasionally they're not. You just ask them to stop and they'll rebook on a anaesthetic list for us to sedate you instead (but you'll have to go through bowel prep again). There are regular GA lists but they're normally for procedures that can't be done under sedation or learning disabilities etc failed sedation is occasionally a reason to be listed but rare as the vast majority are totally fine with fent/midaz (they're our default drugs in a lot of sedations like getting your heart shocked back into a normal rhythm so hardly mild

Diazepam and midazolam are nothing alike and can't be compared at all

You can still have recall with propofol .... we consent everyone for it.

Privately you have a bit more say in drugs but there's nothing to stop an anaesthetist using fentnayl/midazolam in the private world if that's their default for the procedure as they're v good drugs that work

I had a colonoscopy last week. The bowel prep was infinitely the worst part.
I had fentanyl/midazolam and they topped up the fentanyl during the procedure and gave me entonox. I was conscious throughout and able to watch on screen.

StJills360 · 21/07/2024 22:13

Hi there - thank you for taking time out of holiday to share your wisdom.

Re: You just ask them to stop and they'll rebook on a anaesthetic list for us to sedate you instead (but you'll have to go through bowel prep again).

That isn't the experience others have shared with me I'm afraid - they stopped after a lot of asking and just re-scheduled the same approach. I don't want that, I'm terrified of anything invasive as it is - I don't want to make it worse. My DH doesn't believe I would back out at the last possible moment - I have before and certainly will again.

One of my friends has his pacemaker battery replaced every 10 years or so. They said last time it took much longer for some reason and they felt that this particular time the sedation didn't seem as effective. So much so they cried and the consultants said that's all they could give - so no choice but to grin and bear it. I feel with my mental state that if it failed and the procedure was re-scheduled, I would be in an even worse mental state. I know that more than likely it would work fine, but as I've not been able to sit in a dentist chair for 25 years either for the same reason, I'd rather not take that risk.

My GP has indeed written a letter to a local private consultant explaining the situation. If that doesn't turn out to be an option, I have a London clinic up my sleeve as it were (my doctor's note says anx++ as I've tried to pre-empt this 5 years ago before there was an actual procedure I physically needed to consider - like a sword of Damocles)

Re: We catergorically won't give you a gas induction for an endoscopy, even if you have propfol it's given through the drip in your arm at low doses so you continue to breathe throughout. The only gas inductions we do in endoscopy is in sub 5yo kids that can't tolerate being cannulated. We don't do them in adults as it's a remote environment for us away from colleagues that can help in emergencies and in adults gas inductions are waaaay more risky

Is this a logistical issue then? Why would this be more risky in adults?

Propofol might not be perfect - but the personal PMs I've got would suggest for those finding the whole process mentally changing that it helps enormously - placebo effect maybe, but whatever gets you through.

OP posts:
Greybeardy · 21/07/2024 22:55

Gas inductions can indeed be higher risk in adults and more so in a remote location like an endoscopy unit as there won’t necessarily be lots of extra anaesthetic hands quickly available if it all gets a bit ‘exciting’. During a gas induction the transition through the stages of anaesthesia takes longer than with most IV inductions and the time spent in the excitable stage is longer. That means you may have a large, semi-conscious adult thrashing about, not breathing properly and turning blue in a remote location, and limited options to manage it if they’re not cannulated because you can’t just wang in some ‘proper’ drugs. Kids are generally smaller, generally have easier to manage airways and usually can be easily held safely on a bed by a few pairs of hands if they start flailing about so a gas induction may be more appropriate (paediatric obesity is making this more challenging though). There’s quite a bit of complex physiology & pharmacology involved in sedation & anaesthesia (including with propofol).

StJills360 · 08/08/2024 17:23

Hi - I found this from Kingston Hospital updated in June this year that would suggest that general anaesthesia for endoscopy is fairly routine (and it even mentions gas induction as well) - https://kingstonhospital.nhs.uk/information/general-anaesthetic-for-endoscopy/

Anyone any experience of this? thanks!

General anaesthetic for endoscopy - Kingston Hospital

General anaesthesia is when you are given medication that puts you into a deep sleep. You are unconscious and feel... Read more »

https://kingstonhospital.nhs.uk/information/general-anaesthetic-for-endoscopy

OP posts:
MissyB1 · 08/08/2024 17:44

What exactly was the problem with having propofol at your local private hospital?

Destiny123 · 08/08/2024 17:50

StJills360 · 08/08/2024 17:23

Hi - I found this from Kingston Hospital updated in June this year that would suggest that general anaesthesia for endoscopy is fairly routine (and it even mentions gas induction as well) - https://kingstonhospital.nhs.uk/information/general-anaesthetic-for-endoscopy/

Anyone any experience of this? thanks!

It's routine as in we do it and it's not beyond our capabilities in the slightest, but it most certainly isn't routine. There's all day endoscopy lists every day, anaesthetic lists are max once a week and are predominantly for surgery that has to be done under GA

I've never heard of doing a gas induction for endoscopy in those above the age of 6 or severe learning disabilities, it's just not how we get adults to sleep as it is far more risky an induction (if something goes wrong such as dropping oxygen levels because spit has got onto the vocal cords for example, and we have no means of getting oxygen into you... we have absolutely no means of quickly getting drugs into you to fix the situation, we rely on the emergency buzzer and a second anaesthetist running in and putting the drip in as an emergency and giving the drugs... endoscopy suites are normally in the depths of the hospital, help doesn't come quickly, so we just don't put patients at that sort of risk with gas inductions.

Premeds to calm you down on the ward, numbing cream so can't feel the drip as much... of course. I can't see you getting a gas induction for your own sake (and the mental health of the anaesthetist)

StJills360 · 08/08/2024 18:48

Hi - yes I get that is more difficult - but what's different for me is that the link I found suggested these things up front - rather than me having to discover them by accident as it were - so for me personally, I feel more confident from the off - the starting point is better - it feels more appropriate somehow. Even if it's not really possible, it feels a lot better service - anyway, I dropped them a question in the name of science.

My "fear" could effect my life, I realise that - and I realise that I've been avoiding medical intervention for a long time - even for eye tests, I've found an online glasses supplied that accepts my prescription from way back - self-certified almost.

MissyB1 · Today 17:44
What exactly was the problem with having Propofol at your local private hospital?

I haven't got to see them yet as they can't see me until end of September - but as per above, the starting point isn't quite what I would like - the web site is telling me how safe things, how effective most people find the sedation, it's uncomfortable rather than painful etc. first. My first appointment is just a chat in any case.

OP posts:
GreatBigBeautifulTommorow · 08/08/2024 19:51

@Greybeardy “wang in some proper drugs”…..nhs staff and this made me laugh out loud!

Destiny123 · 08/08/2024 21:04

StJills360 · 08/08/2024 18:48

Hi - yes I get that is more difficult - but what's different for me is that the link I found suggested these things up front - rather than me having to discover them by accident as it were - so for me personally, I feel more confident from the off - the starting point is better - it feels more appropriate somehow. Even if it's not really possible, it feels a lot better service - anyway, I dropped them a question in the name of science.

My "fear" could effect my life, I realise that - and I realise that I've been avoiding medical intervention for a long time - even for eye tests, I've found an online glasses supplied that accepts my prescription from way back - self-certified almost.

MissyB1 · Today 17:44
What exactly was the problem with having Propofol at your local private hospital?

I haven't got to see them yet as they can't see me until end of September - but as per above, the starting point isn't quite what I would like - the web site is telling me how safe things, how effective most people find the sedation, it's uncomfortable rather than painful etc. first. My first appointment is just a chat in any case.

I keep reading your first paragraph and sill can't work out what you mean, sorry

It's not per say difficult, it's easy theoretically to gas induce, it's just it's dangerous if/when something goes wrong.

I decided to read the link to see what you meant... they're not referring to gas inductions at all... they're talking about gas maintenance of Anaesthesia. So we get the patient to sleep with iv propofol the keep them asleep by breathing anaesthetic gases. That's the alternative anaesthetic type to tiva (total intravenous anaesthesia

Whatevershallidowithmylife · 08/08/2024 21:39

Hi OP, I too have tomophobia - it’s absolutely terrifying I know. I have found that Lorazapam is very helpful. The recommended dose is half a tablet but I require two to get me through the door. I would suggest you speak to your GP for a prescription. I would need that to get the cannula to get the sedation.

StJills360 · 08/08/2024 21:50

Sorry - that was a bit jumbled. Yes, I realise the gas induction is maybe not a possible in reality. What I mean by my comment is that when I read the NHS Kingson link, I get the impression that a endoscopic procedure under a GA isn't the equivalent of putting a man on the moon. Destiny123 mentioned numbing cream and calming pre-op drugs - but that is the first time they have been mentioned by a professional in this context. Despite my DH spending nearly £20k at a private dentist, not once were they offered any of these - if you are scared in the dentists you tend to clam up in self-defence and say nothing - I kept my distance from this treatment for obvious reasons - when I asked on their behalf as the pain got too much, it was as if I'd invented fire and they huffed and puffed and ultimately did nothing - I had to score some Codeine for them as the private dentist wouldn't prescribe anything (less to go wrong for them) for pain relief.

I don't know what I don't know - so I wouldn't know what help I could ask for unless an expert offered it to me first. I have explained this to the BCSP nurse - they couldn't offer anything except speaking to the GP. Then when I spoke to a private clinic, they couldn't help me except for the Propofol procedure itself. The GP has referred me to another private clinic - but I'm not holding my breath.

I realise my situation is probably laughable to most MNers - and that me talking about it endlessly is winding people up, but me trying to man-up and attempt a procedure such as this is torture - so I don't think a JFDI approach is right for me.

I am happy to skip the diagnostic test as it's too much stress - it's my choice and I am comfortable in that decision. I realise the (maybe) serious repercussions this may cause - but it doesn't overcome my fear unfortunately.

OP posts:
Destiny123 · 09/08/2024 05:01

StJills360 · 08/08/2024 21:50

Sorry - that was a bit jumbled. Yes, I realise the gas induction is maybe not a possible in reality. What I mean by my comment is that when I read the NHS Kingson link, I get the impression that a endoscopic procedure under a GA isn't the equivalent of putting a man on the moon. Destiny123 mentioned numbing cream and calming pre-op drugs - but that is the first time they have been mentioned by a professional in this context. Despite my DH spending nearly £20k at a private dentist, not once were they offered any of these - if you are scared in the dentists you tend to clam up in self-defence and say nothing - I kept my distance from this treatment for obvious reasons - when I asked on their behalf as the pain got too much, it was as if I'd invented fire and they huffed and puffed and ultimately did nothing - I had to score some Codeine for them as the private dentist wouldn't prescribe anything (less to go wrong for them) for pain relief.

I don't know what I don't know - so I wouldn't know what help I could ask for unless an expert offered it to me first. I have explained this to the BCSP nurse - they couldn't offer anything except speaking to the GP. Then when I spoke to a private clinic, they couldn't help me except for the Propofol procedure itself. The GP has referred me to another private clinic - but I'm not holding my breath.

I realise my situation is probably laughable to most MNers - and that me talking about it endlessly is winding people up, but me trying to man-up and attempt a procedure such as this is torture - so I don't think a JFDI approach is right for me.

I am happy to skip the diagnostic test as it's too much stress - it's my choice and I am comfortable in that decision. I realise the (maybe) serious repercussions this may cause - but it doesn't overcome my fear unfortunately.

It's not man on the moon territory at all, its just not standard operating procedures at all

Have you actually spoken to an anaesthetist before as its us that suggests ways round things as millions of people are needle phobic and most are petrified of seeing us so we are used to reassuring and finding solutions (I cried my eyes out the entire duration of being anaesthetised in med school, it was totally fine)

Dentists aren't anaesthetists they can't give sedation/cream outside of a dental hospital and only v few dentists are trained in sedation. Again we do GA for dentistry but it's rare unless it's a child having rotten teeth out/learning disabilities/movement disorders/dementia but we occasionally do them for severe anxiety

Your best option is emailing your consultants secretary, asking if they work private/where - asking for their private secretaries email (sometimes they're the same person). Email them and ask for a GA scope list appt.

Have you asked your consultant if you would be suitable for a ct cologram or capsule cologram (bowel prep then scan/swallow videocamers), they're sometimes options available depending on what they are looking for

Gp isn't the best path through this as they don't know what the options are or pathway in

Screening is totally your choice, my mum refuses mammograms as they're unpleasant, as I tell my pts, nothing is mandatory, I'm not going to force anyone into anything, you need to do it willingly with the best I can offer.

StJills360 · 28/08/2024 13:20

I will see a private consultant (colorectal surgeon) next month for further discussion re: enhanced sedation. There isn't a consultant in the NHS for me to talk to as I don't have any symptoms. I will discuss the CT and capsule options at that appointment (they don't offer these but we can at least talk about where). They mention some tests "on the day" but I won't consent to those at this stage.

(I realise this is probably the wrong person to talk to now as I need MH support - but my partner pressuring me to do something/anything - so it's only 30 min. drive and £200 wasted).

I have managed to obtain my FIT score from the BCSP and it's 166 (vs a 150 threshold in Wales, Scotland is 80 and England is 120) - no idea why you have to chase them or why the tolerances are so different across the UK. To be fair to BCSP they turned my request for the score around quickly.

Annoyingly the "discharge" from BCSP hasn't been communicated with my GP (only the abnormal result letter) despite them saying they would tell them - so I had to take out a specialist travel insurer as I have an "undiagnosed condition" for full disclosure. This didn't cost much, but I think the BCSP should mention this when considering to take the test as most high street insurers don't want to know me now.

Thank you to everyone for their support/advice!

OP posts: