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!

Hi - the private consultant was very understanding (Nuffield) - but all they could offer was a reassurance that they could max. out the standard sedation so much that I could stay overnight if needed. I didn't take this up much to his and my partners surprise. They also recommended re-trying diazepam at a higher dose to see if would enough to get me into the room at least.

My GP helped me attempt a blood test using a larger dose of diazepam than before (with the blood test to trigger some real stress) and it only really made a very tiny difference - while I clearly felt it's effects, it didn't remove any anxiety really (same as alcohol, no matter how drunk I am, I don't really loose my inhibitions). Maybe a doubling again would help?

The mental health route also drew a blank - they didn't even charge me for the consultation in the end as they couldn't help!

So I've parked the issue as I don't see a way forward at this point - but thank you to everyone who commented as your feedback has been priceless.

OP why don't you ask for a CT scan? Or ask where you can do the capsule test?

Last year my mum had a colonoscopy and they couldn't complete it for other reasons so they did a virtual CT scan a couple of weeks later. She had to do the prep twice but the CT scan is not invasive and you won't need sedation - or not as much, anyway. It isn't painful: the sedation would just be for the tomophobia.

The downside is that if they do see something they may have to do a colonoscopy anyway, but you can cross that bridge if you have to come to it and maybe GA would be more of an option if they actually needed to remove something.

They prefer doing a colonoscopy but the CT scan is widely available. I assume you've researched it already but I would have thought it was the best way forward at this point.

Thanks - I've parked all this now - after the Vallium "test" didn't work as I hoped and the MH support said they couldn't help me, I've abandoned it. Like I mention ed earlier, I am symptomless so will have to accept the 10% risk as its just too scary for me to contemplate doing anything invasive.

This is quite sad. When I had a colonoscopy under midazolam and fentanyl, I was fully intent on watching the whole thing. It knocked me so flat that they had to wake me up to say they needed the recovery bed.

That's a shame.

I have had colonoscopies for Ulcerative Colitis, which makes it very painful. Also a history of SA. Despite sedation I found them so distressing that I told the consultant I couldn't do them anymore - he arranged for all future ones to be under GA. I had to wait a bit longer for appointments, as they need an anaesthetist too, but that was it.
I agree sedation is not sufficient - I've always remembered every second of (several types of) procedures under sedation. All it's ever done is made me incapable of communicating my distress.

@StJills360 I am symptomless so will have to accept the 10% risk.

Wondering how the 10% risk is calculated. Does it refer to a 10% risk of developing colon cancer with that FIT score?

Hi - from a score around 165 the consultant agreed that 10% cancer risk being present (I can't remember where a read that but he agreed) and 30-40% advanced adenoma risk being present (that was his figure on day). Apparently 165 is a "significant" score - you will have to ask BCSP for it as it wasn't provided automatically.

Don't mean to sound a doom monger but remember large or advanced (high grade) adenomas have a very good chance of becoming cancers at some point.

Hospitals aren't geared up for the level of fear you have. And nobody wants to give GAs if they don't have to because you can die under them. (I think badly administered propofol the stuff Michael Jackson died from)

So if you can work on reducing the fear to the level that you can walk into a dentist or doctors surgery without being totally terrified then you'll be over the first hurdle.

You said you had help in 2018 but it didn't go well.

Maybe try again now. Hypnotherapy. Acupuncture. Anything that can make you better able to manage your fear. You need to put the work in. It's not going to be a walk in the park but you can't go on as you are.

It will help when you're in dental agony. Which, after 25 years of not going to the dentist, will be in the post already.

If you put the work in for going to the dentist it will help for the hospital.

I think some sort of provision should be made for those with this extreme fear, providing the risks are discussed beforehand.

Among the thousands and thousands of patients that present themselves for this sort of procedure, there are going to be one or two with extrême fear who quite simply need extra help bc they don’t fit in to the same box as everyone else.

Some people with ASD will fall in to this category for example,

there are provisions. It's really not that rare to do GA scopes (which is really what's needed if complete oblivion is the requirement) - it takes a bit of planning, but it's really not that difficult.

Wow that's some negativity there! Modern Anaesthetics are safer than an easy jet flight to Spain in terms of mortality risk

Mj died cos it was being administered by a private cardiologist not a trained professional

I absolutely understand that from a medical POV, a GA is the “last resort” for colonoscopies etc, and why there are good reasons for that.

However. For a very few patients, the additional risk (and cost to NHS!) of providing a GA initially is outweighed by risk of the “I just can’t have it done then”/kicking the can down the road approach, resulting in a worse outcome for the patient which requires even more NHS care eventually.

I had to have a colonoscopy. I have a history of sexual abuse including rape - oral, vaginal and anal. I explained this and the “it’s just a soft tube up your bum” and being sold the wonderful benefits of twilight sedation, had almost persuaded me to try it. Ironically the male doctor then said “and you just tell us if it hurts and I’ll stop” that made me think - actually, no fucking way. I will never put myself in a situation where a man feels he has to say that phrase beforehand. And I don’t fucking believe them when they say it, with good reason.

My female GP managed to find a female consultant who understood and initially I had a CT scan. I did need a colonoscopy and they agreed to do it under a GA but the waiting list was a year. I managed to get a short notice cancellation slot, luckily.

No amount of therapy could have made me overcome my fear of having it done (and in fact the thought of being in a semi conscious state felt like an even worse choice). Initially I was guilted and made to feel a nuisance for requesting GA, by the male consultant but I refuse to feel guilt.

It wasn’t a failing or weakness, or being scared of pain that made me choose/insist on a GA. If anything, it was the men who raped me, who bore the responsibility of that “choice”. It wasn’t me, it was on them.

No amount of money could have bought enough therapy to solve it in my case @StJills360 but if I were in your shoes, I would be seeing if you can address your fear with therapy as it may be a good investment for the future, as it seems a more generalised fear that would affect a lot more procedures than my specific situation. I don’t know how easy it would be to overcome it of course. An empathetic female consultant also made a huge difference in my care. Good luck to you.

Hi - I am not sure where to turn to re: therapy to be honest - there are plenty of quacks around - but a couple of folks on Reddit suggested a psychiatrist - I will ask my GP. Unlike what a lot of folks are reporting, our local GP surgery seems happy to correspond via email for all things - they even set up my blood test appointment at 0700 for minimum stress and were happy to communicate via email for the results (which had other issues) - not sure I've been in person since 2018.

You could get one done privately in Los Angeles for around $1300 including the Propofol. Maybe you should book a trip...it still sounds like it would be cheaper than getting it done in the UK.

It's about the same price in New York, and a much shorter flight.

But, it's sunny in Los Angeles at this time of year. Much better to be poolside while doing prep!!!

How very annoying - luckily I already have life cover - but my broker said it wasn't competitive and offered me some cheaper alternatives- but noone will touch me due to "undiagnosed condition". I really think the BCSP should point that out in the literature as it an important consideration should it become an issue