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Original poster

Anyone else immune to sedation? Endoscopy fail?

76 replies

Chartreuser · 17/05/2019 16:44

So I went for my endoscopy tidy. First lot of needs did nothing. They gave a second lot (pethidine) also did nothing so they died and I stood up and walked out (and removed oxygen mask they insisted I needed).

I am not obstreperous just really upset, I had explained several times I was scared and would be good if someone could be with me and despite there being four people in the room there was no one taking to me/reassuring me etc. If they'd said 'this is the worst bit etc ' I'd have maybe given it a go but they just seemed a bit cross.

Anyone else seemingly immune to sedation? They are now referring me for surgery so they can knock me out instead

OP posts:

PeanuttyButter · 17/05/2019 23:03

Had several endoscopies upper and lower.. had with and without sedation. I'd always go without. It's just as awful but you have the mental capacity to try and see sense and calm yourself. With sedation you just fight it

SD1978 · 17/05/2019 23:06

There is a maximum dose hat can be given for twilight defeating as there is not the equipment if the staff for 'full' sedation. Can you make another appointment for that? I'd be giving feedback as opposed to complaining to PALS, that you felt they weren't supportive enough. No one did anything 'wrong' but not being more reassuring, but you could give feedback that you needed it

SimplySteveRedux · 18/05/2019 08:47

Sad to read these stories. Definitely ask for GA/Propofol sedation.

Original poster

Chartreuser · 18/05/2019 09:39

SD1978 I thought PALS was for feedback? I definitely mean feedback rather than a complaint, but I think a few things different could have made a huge difference.

OP posts:

rosie39forever · 18/05/2019 13:27

I agree with peanuttybutter for me endoscopy is so much easier without sedation as you have the capacity to calm yourself down and can leave straight away, the procedure only takes a few minutes and if you can get your breathing under control and focus (I watch the second hand on the clock on the wall going round) it's done in no time. I believe having full anesthetiser with endoscopy is quite dangerous and only used as a last resort.

MountainDweller · 19/05/2019 00:49

I've had a few procedures under sedation and it worked fine when I had my wisdom teeth out and then for ankle surgery (together with a spinal). However I few years later I had another surgery with sedation and spinal and I was wide awake! I'm sure it's because I was on a not insignificant dose of opiates and benzodiazepines at the time, and for some reason they hadn't taken this into consideration. I got through it but I was struggling being so aware of everything that was happening. I don't know why they can't look into what meds the patient is on before they decide on how to proceed. I had to give a full list but it seems it was ignored. I wasn't even under the NHS so it happens elsewhere too. I hope you get something sorted. I wouldn't go for the sedation option again, I would opt for a general, even though my dose of opiates etc has decreased.

stupidbutsoscared · 19/05/2019 01:17

I have a paradoxical reaction to midazolam iie become suddenly violent and aggressive), have thrown things and kicked out etc - as an alternative I’ve been given morphine and fentanyl for sedation in the past , which doesn’t have the same effect . Just a thought , if it might be an option .

Walnutwhipster · 19/05/2019 01:33

I go into theatre and have a GA for all my endoscopies.

SimplySteveRedux · 19/05/2019 04:44

it's because I was on a not insignificant dose of opiates and benzodiazepines at the time,

Yeah, my hospital trust don't take this into account. Across the country the standard cocktail is midazolam/diazepam and morphine/fentanyl.

I'd really strongly advise anyone with any opioid/benzodiazepine/barbiturate/antihistamine tolerance to demand Propofol/General Anaesthesia. These tolerances can lead to you being totally conscious and aware of the procedure.

thatmustbenigelwiththebrie · 19/05/2019 05:31

I had a gascroscopy last week and was really scared. I asked for "loads of sedation". She told me that there is a limit and they can't just increase it.

In the event it worked for me although apparently I put up a huge fight when they tried to insert the camera but I have absolutely no memory of it.

elsabadogigante · 19/05/2019 19:02

rosie, a lot of people have conditions that make it impossible for them to just focus or calm themselves down.

faelavie · 20/05/2019 15:32

I'm an endoscopy nurse. At my unit we have strict policies when it comes to sedation as we're at a community hospital with no anaesthetist. If a patient came in and asked for propofol or GA, they wouldn't be able to have it, they'd have to go back to their GP and get referred all over again.
We're not being difficult or unkind, this is for your safety.
So if you're so nervous that you need this you need to mention it to your referring doctor.

DecomposingComposers · 20/05/2019 15:36

Can you have entonox and sedation?

Before my last colonoscopy I mentioned to the Dr that fentanyl doesn't usually work and he said it was no problem. They would give it to me with midazolam and I coukd have entonox if needed. The procedure was really painful and I asked for entonox but the nurse said I couldn't have it because I hadn't been assessed for it.

I have another one in 2 weeks. How do I avoid a repeat?

elsabadogigante · 20/05/2019 15:47

So if you're so nervous that you need this you need to mention it to your referring doctor.

The thing is, a lot of them won't refer you on unless you've tried the standard first, so everyone's time is wasted, even if you and they know you have a condition like PTSD or have opiate/sedative tolerance due to treatment, you get fobbed off with 'You'll be fine'.

mollpop · 20/05/2019 15:50

Telling a previous poster to "fuck right off" isn't exactly helpful. And, yes, you do sound like hard work.

Having said that, propofol is great and I hope you're able to get some suitable sedation and get the procedure done soon.

Punxsutawney · 20/05/2019 15:56

Yes Ds had to have two failed attempts before they would do it under general. Really unpleasant for him as he was only sixteen. I remember after the second failed attempt the nurse that discharged him seemed to make a real fuss about it failing. Ds felt awful, she didn't even discharge him properly and gave him no paperwork. She gave the impression that he had wasted everyone's time. He found the whole experience quite distressing.

DecomposingComposers · 20/05/2019 16:04

That's awful.

I've just had similar. Had colonoscopy last week. Explained beforehand that 1 type of prep always makes me sick but hospital insisted that was what I had. Dutifully took it. Threw it all up. Went for colonoscopy and they couldn't do it so said as it was urgent they would get me back within 2 weeks. I asked for different prep and they refused so I have got a private prescription from somewhere else.

Just had phonecall to rebook and the clerk was horrible. She said it's a long wait so I explained that it's urgent and she said they had done what they needed to by giving me the 1st appointment. The fact that it wasn't done and I could have a tumour happily growing away undetected is immaterial apparently. Had they listened to me and changed the prep it would all be over. All booked now anyway. She spoke to someone else and it's sorted but realise when things aren't the patient's fault.

elsabadogigante · 20/05/2019 16:06

I had to have failed attempts as well, despite my telling both the referring doctor and the nurses/team about my diagnosed PTSD and the nature of it. But nope, 'Let's just try'. 'You'll be fine' 'Just relax' (doesn't work with conditions like that, or autism, which my son has and experiences similar problems). I get that they think a lot of people will just opt for the strongest option first, but if you do have a person whom you know has a diagnosed condition that may well make it difficult, it seems a stupid waste to keep trying the standard approach over and over.

A friend of mine had to have a scan of her sinuses. The department told her 'We're busy, you'll have to go to the children's unit' and someone went with her. Despite her telling them her only child had died from DIPG and the paed scan section was very triggering to her so could she just reschedule. Nope. So she wound up with a major flashback. Job done, eh. She didn't get the fucking scan she needed and she's had a mental health setback.

Punxsutawney · 20/05/2019 17:27

Some really unpleasant experiences for people. Although Ds was only sixteen I wasn't allowed to even wait with him because it was an adult department and relatives are not allowed in the waiting room. He was still at school, scared and not allowed a parent with him whilst he waited.

Glad you got your appointment sorted Decomposing.

Original poster

Chartreuser · 20/05/2019 17:40

mollpop but all they did was have a go. I did explain to GP I would struggle, but protocol in my area is only get referred for GA if they fail with sedation. It is a fault of the system, if it was a clinician doing the referral the GP could have explained my history and why it was likely to fail/sedation wouldn't work. So having a go at me for wasting an appointment isn't on.

I am amazed (and reassured) that so many other people have had difficulty. I am sorry that so many others have struggled but up until putting this had only had positive experiences.

Elsa and Punx they are both awful. I have worked very hard to get over crippling anxiety but I didn't realise how awful I would feel after explaining how scared I was and that I needed to be told before anything was done and that was still ignored. I nearly died having ds along the same corridor which is where I think it mainly stems from.

OP posts:

Rangeloaf · 20/05/2019 17:41

Sedation never works on me but I had an endoscopy anyway.....wasn’t pleasant but ok!

Dentists I have to have loads of injections. Once at the hospital they asked if I ‘used opiates’ as they usually only see the resistance in heroin users! Someone once explained to me that certain people metabolise opiates super quickly, not sure if that’s why?

Valium I can take quite a significant amount and be fully functioning, reading books etc when doctor thought I should be passed out- but I don’t think that’s an opiate is it?

Rangeloaf · 20/05/2019 17:43

@decomposingcomposers I use entonox. Just keep saying you want it to everyone you ever see and when you go in. I’ve never found it a problem and I didn’t need to be assessed, it’s so safe anyway

DecomposingComposers · 20/05/2019 17:47

Rangeloaf

It's a definite "thing" that people with hypermobility are very tolerant to local anaesthetics.

I need to come up with a plan ahead of my next one. For some reason the 2 that I've had in the last month have been excruciating. I've never had it as bad before.

The last Dr promised sedation plus gas and air but the nurses refused so now I need to find out if I can have both or only one. If only one I'll have to try just gas and air because fentanyl and midazolam do nothing.

DecomposingComposers · 20/05/2019 17:49

@Rangeloaf

Thank you. I don't know what the problem was. Beforehand the Dr said I could have both but then when I asked for it the nurse said no and that they couldn't assess me because I was sedated. Never did find out the reasoning.

mollpop · 20/05/2019 18:06

Sorry if I jumped to conclusions. I have about 5 endoscopies a year due to an ongoing condition and you definitely have my sympathies. I've had some with no sedation, some with ineffective sedation and now have propofol. I'd highly recommend propofol if you're offered it. Best of luck and I hope things get sorted for you soon x

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