Colonoscopy using propofol for "enhanced sedation"?

[StJills360]

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!

With propofol or with GA? Sorry not sure I understand! They don't use both do they?

Edited to say: ignore above question pls, previous poster explained!

You can't just "ask for a higher dose" until it works. There is a legal limit for sedation w/o an anaesthesiologist managing it. For very good safety reason, hence the NHS "enhanced sedation" (see NHS glos.) on offer. If you ask them to stop when you aren't sedated - they have to right away. If you are (supposedly) sedated and you ask them to stop, then they can use their discretion to decide to ignore that request as while you can't consent to a procedure under sedation you also can't stop it immediately (as you are deemed to be not fully aware). You have to ask repeatedly it would seem, you can find MN examples where they have reported a "nurse asked the doctor to stop as well" when this has happened.

Update - checking my notes from yesterday has cast some doubt on what the GP is offering as the above jogged my memory - she mentioned organising a "stop signal" - which would imply that the referral wasn't for enhanced sedation after all. That's all well and good, but when they've reached the legal limit for sedation and (say) they do stop it immediately at my request, it would mean either abandoning it there and then and trying a repeat at a later date, or carrying on as-is. Either way, that for me will make things worse. Again there a MN stories of multiple attempts and failures - surely that's far more expensive that just putting the patient on a different list? If I was to accept the appointment, and on the day, withdraw consent as I freaked out entering the procedure room, that would have cost £1000s?

The bottom line is I wont be proceeding with the sedation as offered initially, even if that is the end of the episode. I will see what the referral letter formally states to decide my next step.

Thx for explaining about the anaesthetics.

Op can defend her own choices, but as far as anxiety is concerned, I know from my own experiences, that it doesn't particularly respond well to rational arguments, however logical they are. I could not tolerate an MRI for example, even though intellectually, I fully understood the reasons behind having it done, and that it "only" involved sitting in a harmless, loud tube.

I know you are right about the comparative risks, but if you can't overcome panic, and you therefore miss many opportunities for screening, there is a risk that comes with potentially missing something sinister too. And that may be greater than the risk of having a GA surely?

Midazolam and Fentanyl should be more than enough for a colonoscopy. Both hard hitting wonderful drugs.

I'm sure there is a maximum limit of fevtanyl + midazolam you can go to, however my specialist told me to let him know if it's uncomfortable and he could top up the doses. Turns out I couldn't even if I wanted to, I was in la la land. Please balance not having the procedure against potentially finding something that is at an early enough stage to cure.

In the US it is considered "usual and customary" to be sedated. I've had several colonoscopies and would feel tortured being awake.

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.

I have recently had proprofol sedation at spire for an endoscopy - no issues at all getting it, and absolutely no awareness of the procedure. No memory of any of it. Would definitely reccomend and have again. We fortunately have Bupa insurance so can’t comment on the cost.

You can't just "ask for a higher dose" until it works.

Yes very true. I had to have dental work done under sedation (midazolam) a couple of weeks ago as I have dental phobia as well as hyperacusis which means I cannot endure the sound of the drill. So it's important I am 'out'. At the assessment appointment my BP was very high apparently (185 over something). I have normal BP when at home, I measured it when I got home that day and sure enough, 123/61.

At the actual appointment the sedation nearly didn't go ahead because my BP was so high. I asked what would happen and was told the procedure might be cut short if it was deemed I could have a stroke or heart attack. Fortunately things must have been OK enough for the dentist to go through with it, however I did recall several of the 'unpleasant' parts so probably my sedation was quite light.

It occurs to me that with phobias or extreme anxiety one's BP will go through the roof, even when it is normal the rest of the time. Something else to bear in mind, the procedure might not go ahead if your BP is over the safe limit, or your sedation might be kept lighter as a result.

They should be moved about 8 times in a straightforward colonoscopy, more if the bowel is a tricky one. The reason for moving that much is to move fluid and get a good view of all the folds. When a patient is under GA moving them is so much more complicated, especially that many times. So it's very unlikely to happen. I spent 10 years as an endoscopy nurse 😁

there's an awful lot of well meaning but inaccurate info re sedation and GA, and propofol vs other drugs here.

A GA isn't necessarily more high risk than deep sedation, and for some patients is in fact safer. An anaesthetist will decide, based on the procedure and the patient's co-morbidities which is the safer option.

There is nothing magical about propofol that makes it a better sedative for procedures like colonoscopy, it's just that it's relatively short acting so wears of quicker than the dose of midazolam/fentanyl would if you gave enough of them to render someone completely oblivious. Giving enough to render someone completely oblivious though may well be performing a GA without airway control, and depending on the patient that may be the highest risk of all the options. FWIW, I don't know any anaesthetists who promise absolute lack of awareness with any sort of sedation. Propofol also has limited pain relieving activity, so doesn't necessarily mean that the other pain relieving drugs won't be needed too.

The reason propofol needs an anaesthetist is that it obtunds airway reflexes (which may mean that an anaesthetist has to provide airway support) and it has more impressive cardiovascular effects that may require drugs to manage. Dealing with those two side-effects are an anaesthetists bread-and-butter, whereas, quite understandably, they're not so much for the endoscopy team.

Non-anaesthetist lists using midaz/fent are protocolised and have 'max' doses because at high doses they will do all the same things (obtund airway reflexes, cause cardiovascular depression). There is not a maximum 'legal' limit of midaz/fent - there are just sensible protocols based on extensive experience that balance out what seems to work best for most patients vs what's likely to cause side effects that need skills outside what you'd usually expect of an endoscopy team.

We do move people about under sedation/anaesthesia, but there has to be a sensible limit to how much we do that, partly for our own safety and partly for that of the patient. HTH.

Thank you for your supportive messages. I am aware of the increased procedural risks with increased sedation but hope that the anaesthetist can make things comfortable as required. In an ideal world, I'd like things as per Grey's Anatomy where the multidisciplinary teams seem to be on call for each other. I know that most likely the BCSP offering of midaz/fent will be enough on the day but if it isnt then I'm shit out of luck.

I have tried the mental health route before (as I engaged my GP back in 2018 for the invasive procedure fear) but that didn't reach anything useful.

I think describes my fear - I hope not with the same outcome https://www.ncbi.nlm.nih.gov/pmc/articles/PMC2803803/

Thank you very much MissyB for explaining; that makes a lot of sense!

Do you mind me asking which Spire? The one nearest to me took a week to reply to say they don't offer this - but didn't suggest one who did - thanks!

Hull spire - they clearly offered it often as was no issue at all.

I agree with @Stripesandchecks543 that risk needs to be considered broadly, not just focusing on one aspect of the procedure.

I’m in Australia and propofol is standard here for all colonoscopy/endoscopy procedures regardless of whether they are conducted in the public or private system.

When I was diagnosed with bowel cancer my surgeon mentioned that the survival rates in the UK are 20% lower than Australia. The risk and cost of a delayed diagnosis needs to be considered when making these decisions.

Does anyone have any experience re: what's on offer from Nuffield in Cheltenham? I believe my request has fallen into a black hole...

Because I've sort help for the anxiety issue in the past, my health insurance provider seems to argue that this is "pre-existing" and maybe only stump up the basic costs - so I will self-fund if needed.

This is all getting very tiresome to deal with now, wish it would all go away and I could turn the clock back and ignore the test...

I have had it on the NHS. Have to have colonoscopies for Crohn's disease, and after failed attempts due to pain, I was offered it!
Amazing stuff

That's good news, glad you got listened to in the end.

I think your experience kind of proves that the default offering isn't all it good be.

You can get a colonoscopy under propofol at the Nuffield in Cheltenham. You are best asking for the Gastroenterologist that works there as he's bowel cancer screening accredited. He should be easy to find on their website as he's the only Gastro Dr working there.

I have dipped out of the BCSP now. They were very understanding and do offer support if needed in the future.

I potentially will see a local specialist instead - the letter confirming the appointment though has suggested that they may need to perform some other procedures at the initial consultation. That wont be happening from my perspective though - this is will be just a verbal discussion to feel them out. I will update them of my wishes in writing as I think a slight misunderstanding has occurred - it's as if a lessor invasive procedure doing a similar thing but not as far inside me, is "better" somehow.

My DH has reminded me that we had discussed a very similar scenario when we first got together 15 years ago (drunken 3 in the morning discussion) and that I said then that I'd rather die than face months of debilitating and humiliating treatment(s) such as this - so he can't say this is new news!

You could still ask for a no-contrast abdominal CT scan - nothing invasive whatsoever, just one of those doughnut machines you'd pass through for around 3 mins. I had that instead of a colonoscopy as I point blank refused to do one due to phobias. My GP recommended it to the referring consultant who of course ignored it to begin with but when they saw I wasn't going to comply with the colonoscopy I was offered that instead, provided I accepted it could 'miss something'. In which case the colorectal nurse told me 'you'll still have to have a camera up your bottom'. Can you imagine telling a phobic patient that? They knew and still said it! Plus there's no 'have to'. All treatments and investigations have to be with the patient's consent.

Of course you do have to then think what would you do if something is spotted. Mine showed some liver 'lesions' (totally unconnected with the bowel issue which later resolved anyway) so I went back for an ultrasound scan (again, non-invasive) however that showed, apart from several cysts that the doctor wasn't concerned about, another liver 'lesion' they couldn't fully visualise so they wanted me to go back for an MRI just in case it was something concerning. I refused that, too, as I have hyperacusis and claustrophobia. Even though it was offered with a GA, simply because there's no way to properly protect my ears. So that's that and to be honest I am relieved to be out of the letters/phone calls cycle!

I think OP that your DH is simply concerned for you because he loves you. It's almost impossible for people who don't have phobias to understand them. Plus we ourselves know they are irrational, it doesn't make any difference. Always remember you are in control. I wish you well!

Wow - thank you for sharing this! A kindred spirit!

I didn't realise a no-contrast abdominal CT scan was an option as I asked my GP for exactly that - you literally have to piece things together yourself these days!

The nurse's comment seems to sum things up doesn't it?

Do you mind me asking where this was done if that's possible? My local NHS hospital seems to offer it and then suggests a contrast dye is needed (that reminds me, my DH had to go to the same hospital for asthma treatment - but on the out-patient ward was a poor guy waiting for a portable ultrasound with a full bladder for over an hour - so much so he had to go to the loo and they were angry with him!). I know that it's not the "gold standard" - and nor is an open scanner over a closed scanner - but it's a step in the right direction.

I'd rather just pay myself - even if it turns up anything else due to incidentaloma. I think the private insurance I have is just for speed rather than this sort of "gentle" approach.

I will reply to the consultants letter I have - I hope they will discuss the above - but looking at the "simple" tests they propose I think that wouldn't be the approach they would like take. If not, I'll look somewhere else.

@StJills360 I recently started a thread about a colonoscopy which I had last week.
I also had a CT with contrast which seems to be the standard thing to do when there is a cancer red flag. The CT contrast is very quick and painless. It does not of course show the detail that a colonoscopy does but if it were that or nothing it seems worthwhile?

Worcester Royal hospital. I think had they insisted on contrast I may have declined if it contained iodine but that would be because I have Hashimoto's. Otherwise would do it. But contrast didn't get mentioned, don't know why.