Endoscopy - sedation ?

A

Amw66

Senior Member (Voting Rights)
My daughter is scheduled for an endoscopy in April.
This will be tricky to manage in energy terms - the info pack from NHS suggested this procedure could take up to 4 hours : the last time we were over 1 hour on hospital for a procedure was way back in 2017 for an ACTH test, and her condition is sadly worse than then.

If someone had had this procedure, can they shed any light on timescale and experience if sedation was a chosen option ?

Thanks
 
I was advised I'd need a couple of hours to recover, and that they'd prefer to keep me on the ward for some time after I'd come round to make sure there were no reactions. They said it would be three hours or so, so pretty similar.

I was worried about how the combination of sedative drugs and being there for that length of time would affect me, not to speak of the fact that they wouldn't do it at all if I went alone! (Having to have a friend with me for 24 hours would have increased the PEM a lot.)

So I decided against it, opting for the numbing throat spray. I was in and out in 15 minutes, it was a lot less unpleasant than I expected, and I'd definitely do the same again if I had to have another one. The energy impact turned out to be no worse than a dental checkup.

I hope your daughter gets through it okay, whatever she decides.
 
I was admitted to hospital after a first anaphylaxis attack and after admission to a ward, was taken on my bed, not a wheelchair, for an endoscopy.
It took about 10 minutes to move me, a 5 minute wait outside the unit, then the procedure was carried out. It was not pleasant but manageable. Staff were businesslike but pleasant enough. About 10 minutes for the procedure: no sedation. I may have had a throat spray.
So it was short, OK and because I was lying flat throughout the whole event, it didn't trigger my ME.
If there is any concern about mast cell symptoms I understand that samples for staining can be obtained during this procedure which may help with a diagnosis. I knew nothing about this so it was just a routine endoscopy.

Hope all is smooth and straightforward.
 
Kitty said:
I was advised I'd need a couple of hours to recover, and that they'd prefer to keep me on the ward for some time after I'd come round to make sure there were no reactions. They said it would be three hours or so, so pretty similar.

I was worried about how the combination of sedative drugs and being there for that length of time would affect me, not to speak of the fact that they wouldn't do it at all if I went alone! (Having to have a friend with me for 24 hours would have increased the PEM a lot.)

So I decided against it, opting for the numbing throat spray. I was in and out in 15 minutes, it was a lot less unpleasant than I expected, and I'd definitely do the same again if I had to have another one. The energy impact turned out to be no worse than a dental checkup.

I hope your daughter gets through it okay, whatever she decides.
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Thank you . Hopefully her experience may be similar
 
Binkie4 said:
I was admitted to hospital after a first anaphylaxis attack and after admission to a ward, was taken on my bed, not a wheelchair, for an endoscopy.
It took about 10 minutes to move me, a 5 minute wait outside the unit, then the procedure was carried out. It was not pleasant but manageable. Staff were businesslike but pleasant enough. About 10 minutes for the procedure: no sedation. I may have had a throat spray.
So it was short, OK and because I was lying flat throughout the whole event, it didn't trigger my ME.
If there is any concern about mast cell symptoms I understand that samples for staining can be obtained during this procedure which may help with a diagnosis. I knew nothing about this so it was just a routine endoscopy.

Hope all is smooth and straightforward.
Click to expand...
Thanks @Binkie4 . Good to hear it was not a bad experience. Hopefully it will pan out ok here too.
 
I've had three of these, all without sedation. The first was a few years ago and I remember it as being no big deal. The next two, done fairly recently, were not great while they were happening but I was reassured by having been told that they would only last about 7 minutes (which they did), and as soon as they were over, I felt absolutely fine and was ready to go home.

Is your daughter an adult, @Amw66? My experience could have been tough for a child, if conscious. For an adult, I would recommend being prepared with distraction techniques to use while it's happening. And to keep bearing in mind that it will soon be over.

There was quite a bit of waiting beforehand, and I had to wait a bit afterwards, too. I had phoned beforehand to explain that I was not able to sit for long periods and would need to lie on a couch and I was provided with a couch to lie on both before and after. As others have said, you're lying down during the actual procedure.

With all the lying down, I was pretty well rested by the time I got home!

I was very impressed with the good and thoughtful care I was given by the different teams and sent a thank-you card both times (I think it's good to do this in these days of NHS staff under tremendous pressure).

I will have to have another endoscopy sometime and although it's not fun, I will again just have the throat spray and no sedation. It's over quickly!
 
Sasha said:
I've had three of these, all without sedation. The first was a few years ago and I remember it as being no big deal. The next two, done fairly recently, were not great while they were happening but I was reassured by having been told that they would only last about 7 minutes (which they did), and as soon as they were over, I felt absolutely fine and was ready to go home.

Is your daughter an adult, @Amw66? My experience could have been tough for a child, if conscious. For an adult, I would recommend being prepared with distraction techniques to use while it's happening. And to keep bearing in mind that it will soon be over.

There was quite a bit of waiting beforehand, and I had to wait a bit afterwards, too. I had phoned beforehand to explain that I was not able to sit for long periods and would need to lie on a couch and I was provided with a couch to lie on both before and after. As others have said, you're lying down during the actual procedure.

With all the lying down, I was pretty well rested by the time I got home!

I was very impressed with the good and thoughtful care I was given by the different teams and sent a thank-you card both times (I think it's good to do this in these days of NHS staff under tremendous pressure).

I will have to have another endoscopy sometime and although it's not fun, I will again just have the throat spray and no sedation. It's over quickly!
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Thanks @Sasha
My daughter is now 21. She has had swallowing issues but these are a bit better.
Anaesthetic worries her a bit.
I think her biggest fear is her neck muscles seizing during the procedure
 
I had an upper endoscopy without sedation, would not do it again (gagging, feeling of the endoscope inside your intestines. But people are different in what they can tolerate. It wasn't painful but very unpleasant for me). Edit: The endoscopy itself only took 10-15minutes, I could go home right after but had to wait for hours in the hospital. That might differ a lot depending where you go.

If your daughter also has a lower endoscopy I don't know of they are even being done without sedation. What's exhausting here is the whole preparation process.

You might want to consider that while sedation means you have to stay longer it might also make pacing and recovery easier (less stress/adrenaline during the endoscopy and wonderful sleep). Edit: that is if she tolerates sedation well. I had Propofol for the lower endoscopy and was fine.
 
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I was given an upper endoscopy with sedation. The sedative drug was one of the ones that causes amnesia. Under the circumstances it is not surprising I have no memory of the procedure itself nor how cooperative I was. It was one of the earliest date-rape drugs - Rohypnol.

I was given a cup of tea as soon as I left the room where the procedure happened and I remember I couldn't keep it level. My husband rescued the crockery. (It was a private hospital but the procedure was being done under the auspices of the NHS.) I was kicked out of the hospital far too soon in my opinion, and couldn't walk for a while afterwords. My husband had to hold me up because my legs just wouldn't support me. You must go with someone to drive you home afterwards, and to help you get from hospital to car to home.

I remember that the man who went in for his endoscopy immediately after me came to the hospital alone and chose not to have sedation so he could drive afterwards. As they (patient and nurse) disappeared into the room where the procedure was being done the nurse was saying in a loud voice "We have another Hero here."
 
Leila said:
I had an upper endoscopy without sedation, would not do it again (gagging, feeling of the endoscope inside your intestines. But people are different in what they can tolerate. It wasn't painful but very unpleasant for me). Edit: The endoscopy itself only took 10-15minutes, I could go home right after but had to wait for hours in the hospital. That might differ a lot depending where you go.

If your daughter also has a lower endoscopy I don't know of they are even being done without sedation. What's exhausting here is the whole preparation process.

You might want to consider that while sedation means you have to stay longer it might also make pacing and recovery easier (less stress/adrenaline during the endoscopy and wonderful sleep). Edit: that is if she tolerates sedation well. I had Propofol for the lower endoscopy and was fine.
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Thank you @Leila
 
Arnie Pye said:
I was given an upper endoscopy with sedation. The sedative drug was one of the ones that causes amnesia. Under the circumstances it is not surprising I have no memory of the procedure itself nor how cooperative I was. It was one of the earliest date-rape drugs - Rohypnol.

I was given a cup of tea as soon as I left the room where the procedure happened and I remember I couldn't keep it level. My husband rescued the crockery. (It was a private hospital but the procedure was being done under the auspices of the NHS.) I was kicked out of the hospital far too soon in my opinion, and couldn't walk for a while afterwords. My husband had to hold me up because my legs just wouldn't support me. You must go with someone to drive you home afterwards, and to help you get from hospital to car to home.

I remember that the man who went in for his endoscopy immediately after me came to the hospital alone and chose not to have sedation so he could drive afterwards. As they (patient and nurse) disappeared into the room where the procedure was being done the nurse was saying in a loud voice "We have another Hero here."
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Thanks @Arnie Pye .
 
Leila said:
If your daughter also has a lower endoscopy I don't know of they are even being done without sedation.
Click to expand...

They are, I had a full colonoscopy without sedation for the same reason: I don't want to have to have a friend with me for 24 hours afterwards, because it would be completely exhausting for me and a right pain in the backside for the friend, who'd have to give up a day's work.

As you say, the prep was vile (oh God, that stuff you have to drink!), but the procedure itself was no problem. It was nearly halfway through before I'd even realised it had started, because the specialist nurse wielding the endoscope was regaling me with funny stories about trying to pass a UK driving test after driving for several years in the Philippines.
 
If my experience of endoscopies is anything to go by, 3 of those 4 hours might be a glorious sleep! And another 1/2 hour or so will be waiting.

Is it an upper endoscopy your daughter is having, ie going through mouth to look at stomach? Worth checking as endoscopy can refer to colonoscopy or a bunch of other procedures too, and your daughter might have different preferences depending on what's happening. https://www.nhs.uk/conditions/endoscopy/

I second others’ suggestions to talk through options beforehand. Maybe try to have an initial conversation on the phone with someone a week or more ahead of your daughter’s procedure, and then do it again when you’re there for the procedure.

Worth knowing that there are a few different types of drugs you can have, and they do different things. For example, a friend had an upper endoscopy recently, and was given all three of these drugs:

1. Lidocaine throat spray – this numbs the back of your throat

2. Midazolam – this relaxes you and supposedly means you don’t remember

3. Fentanyl – this relieves pain

I was recently given only midazolam for an upper endoscopy and colonoscopy, and neither procedure could be completed as I woke up choking for the first and was wide awake and in extreme pain for the second. I remember both in detail. Please don’t be put off by this – I expect I would have managed the upper endoscopy just fine on lidocaine alone or with one or two of the others, and similarly I expect I would have managed the colonoscopy had I been given pain relief. I was having a million tests during an unanticipated hospital stay and hadn’t been able to look everything up and know what to ask for. Since I had had two successful colonoscopies in the past, I was not expecting problems with the procedures themselves at all.

And most people apparently tolerate the scopes just fine with midazolam alone. Before I went in I did hear one woman being told that she hadn’t been able to tolerate it – news to her, so I guess the memory-obliterating part worked for her, while it didn’t for me! But everyone else was just being given their results and had obviously tolerated the scopes fine.

It could be worth planning through a few scenarios eg

· What your daughter would like to try first

· What to give your daughter if she’s in pain during the procedure, or if her neck muscles spasm, as you mentioned in your post

Also, if your daughter needs to be lying down as soon as she arrives (eg if she has orthostatic intolerance), then ask for that - they should be able to accommodate her. Explain her needs and a good department should make it as smooth as it can be for her.

Hope this helps you plan rather than scares you. I would have no hesitation doing upper or lower scopes again with different drugs and an agreed plan with a nice team.
 
Evergreen said:
If my experience of endoscopies is anything to go by, 3 of those 4 hours might be a glorious sleep! And another 1/2 hour or so will be waiting.

Is it an upper endoscopy your daughter is having, ie going through mouth to look at stomach? Worth checking as endoscopy can refer to colonoscopy or a bunch of other procedures too, and your daughter might have different preferences depending on what's happening. https://www.nhs.uk/conditions/endoscopy/

I second others’ suggestions to talk through options beforehand. Maybe try to have an initial conversation on the phone with someone a week or more ahead of your daughter’s procedure, and then do it again when you’re there for the procedure.

Worth knowing that there are a few different types of drugs you can have, and they do different things. For example, a friend had an upper endoscopy recently, and was given all three of these drugs:

1. Lidocaine throat spray – this numbs the back of your throat

2. Midazolam – this relaxes you and supposedly means you don’t remember

3. Fentanyl – this relieves pain

I was recently given only midazolam for an upper endoscopy and colonoscopy, and neither procedure could be completed as I woke up choking for the first and was wide awake and in extreme pain for the second. I remember both in detail. Please don’t be put off by this – I expect I would have managed the upper endoscopy just fine on lidocaine alone or with one or two of the others, and similarly I expect I would have managed the colonoscopy had I been given pain relief. I was having a million tests during an unanticipated hospital stay and hadn’t been able to look everything up and know what to ask for. Since I had had two successful colonoscopies in the past, I was not expecting problems with the procedures themselves at all.

And most people apparently tolerate the scopes just fine with midazolam alone. Before I went in I did hear one woman being told that she hadn’t been able to tolerate it – news to her, so I guess the memory-obliterating part worked for her, while it didn’t for me! But everyone else was just being given their results and had obviously tolerated the scopes fine.

It could be worth planning through a few scenarios eg

· What your daughter would like to try first

· What to give your daughter if she’s in pain during the procedure, or if her neck muscles spasm, as you mentioned in your post

Also, if your daughter needs to be lying down as soon as she arrives (eg if she has orthostatic intolerance), then ask for that - they should be able to accommodate her. Explain her needs and a good department should make it as smooth as it can be for her.

Hope this helps you plan rather than scares you. I would have no hesitation doing upper or lower scopes again with different drugs and an agreed plan with a nice team.
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Thanks for this - very useful .
It's an upper endoscopy which may take a biopsy ( as I currently understand it , there is a patient info leaflet through in today's post which I have to look at later )
It's always better to be prepared and we will be in touch with the department prior to bottom things out more fully.
 
Kitty said:
They are, I had a full colonoscopy without sedation for the same reason: I don't want to have to have a friend with me for 24 hours afterwards, because it would be completely exhausting for me and a right pain in the backside for the friend, who'd have to give up a day's work.

As you say, the prep was vile (oh God, that stuff you have to drink!), but the procedure itself was no problem. It was nearly halfway through before I'd even realised it had started, because the specialist nurse wielding the endoscope was regaling me with funny stories about trying to pass a UK driving test after driving for several years in the Philippines.
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Wow, Kitty, you are tough! I had to have my second colonoscopy without sedation (the doctor couldn't get an IV in me), and I was screaming the whole time--my colon went into severe spasms. So as much as I hate the sedation, I'll ask for it next time. (Here in the US, it's extreme--they actually now knock you completely unconscious for a colonoscopy, and I am going to request light sedation.) But as for upper endoscopies, I've lost count of how many of those I've had, and only the first two, when I was a kid, were done with sedation. In the US, you have to fight to get it done without, but I'm willing to give that fight. I hope, Amw66, that things went smoothly for your daughter!
 
Thanks @SunnyK . The procedure was postponed twice , so happened in June .
The procedure went ok. The nurse could see my daughter was uptight and was lovely . She clearly explained exactly what would happen which always makes a huge difference.
Numbing spray worked ok. Just a very weird feeling when your throat is numb but digestive tract isn't.

The knock ons , as usual , were poor sleep the night before , travelling and the adrenaline rush afterwards, so a bit of a reduced baseline after PEM.

Just await the results as a couple of biopsies were taken as there was " inflammation " ( as this is non urgent we were told it would be 12 weeks or so)
 
SunnyK said:
Wow, Kitty, you are tough!
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Not at all! I didn't know it had started because I couldn't feel very much. The cable got into a loop at one point near the end of the procedure, and I felt a cramp then that made me gasp a bit, but the rest of it was okay—all I remember about it now was the very funny nurse and the weirdness of seeing your own insides on a TV screen. I'm sorry you had such an awful time of it, it sounds hideous.

Amw66 said:
Numbing spray worked ok. Just a very weird feeling when your throat is numb but digestive tract isn't.
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I found that odd too. I really felt it when they took the biopsies, but had almost no sensation in my throat. I had the weekly heads of department meeting at work immediately afterwards, but couldn't contribute much because no sound came out at all when I tried to speak! I'm glad it went okay for you daughter, and fingers crossed it's something they can sort out.
 
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