Hi, I recently had the very strange experience of a doctor taking me seriously, due to having very high ferritin results from blood tests, and because I have oesophagitis (longstanding) and somewhat irritated lungs presently (change of meds and aftermath of cold) she has put me through for a test to stick a camera down my gullet and see what's going on. The downside of having a doctor who actually cares!
Despite having oesophagitis for a long time and being on various acid blocking medications for years, I've avoided this test precisely because I'm scared of it.
I get super anxious just having a telephone appt with a doc, so I am absolutely dreading this. I have no support network, I'm on my own, which just makes the fear worse.
How bad is this? (Be honest please!) And more importantly, do they medicate you? I mean tranquillizers. I greatly fear a panic attack and simply not being able to get through it. Is there anything I can ask for to make it easier? Any advice from anyone who has had one most gratefully accepted. Thanks!
P.S. Absolutely sure this test has a nice name but I can't for the life of me remember what it is. I keep getting ERCP, but I think that's just for gallstones!
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Chancery
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Best is to contact your GI team who contacted you for the appointment and advise them of your anxiety issues to seek partial or full anaesthetics use. We all are different.
The test is hardly 5 minutes to 10 minutes max and I tend to do it just with throat spray because I prefer not to stay in the hospital more than what I need. I can tolerate a lot pain.
You can choose to stay as a day patient or overnight depending upon the time of the scopy, typically this will be proposed in the first half of the day as you would be fasting beforehand etc.
The gastric bleed is causing elevated levels of the levels of iron, speculation. Have you checked the stool colour to see fresh spots of blood? Do you feel excessively tired thna normal?
Thanks, Mauser. I don't have an appt' yet. My doc only put the referral through yesterday and I have no idea what the waiting list is like for this - if anyone knows I'd be grateful for an idea of time scales - but I am very reassured by how short the length of the 'operation' is, thanks for giving me the heads up on that. I assumed they'd be poking around in there for at least half an hour!
And I know I will definitely give them a heads-up about my anxiety levels, which I fully expect to be through the roof by the time the appt shows up. I don't like dental procedures or anything in my mouth so I feel worse about this than the bladder investigation I was told yesterday I am also having - although the bladder is a lot more embarrassing.
I am afraid of having a panic attack and embarrassing myself on the table. Or being so afraid I can't actually get on the table. I also feel miserable about the months of worry I will go through waiting for the appointment. I wish I'd thought to ask how long I'm likely to be waiting.
Hi, I've had 5 endoscopies and tried with and without the sedative. With sedation you will be semi conscious but not really care what's going on or at least that's the theory. When I had my first one I decided to do it without sedation and found it quite easy, the main problem was burping and subconsciously I was trying to fight it but because they use air it's unavoidable so in subsequent endoscopies I just let it go and to be honest it was the easiest thing I've ever had to do. The second time however they were doing an EUS (Esophageal Ultrasound) and wanted to be sure I'd stay perfectly still so strongly recommended the sedative and (for me at least) it didn't really work, I felt out of control and became anxious waiting for kind of result that really wouldn't ever happen. Since then I've had 3 more as I said and on the last one I was so relaxed he actually asked if I could lay on my back as some puddles were blocking their view. The sensation of the endoscope past the throat really isn't that bad and they do use a throat spray which will numb the sensitivity, once it's passed through it doesn't really feel uncomfortable but (and this is a big but) we are all different and as Mauser said you will have time and are expected to talk over any reservations and anxiety with the ward staff and the actual technician before you go in and the sedative may be the best thing for you as we all have different ways of managing our druthers. Personally I experienced no pain or discomfort and it is really just a case of relaxing, in fact (and I do this at the dentist too I've realised) I just close my eyes and let myself drift and before I know it they are removing the endoscope and I can go home. Don't let it worry you though, it won't be nearly as bad as you think. I've had 5 as I said and to be honest I'd rather have an endoscopy than a dental procedure.Martin
Many thanks for the reassurance, Martin. It's great to hear form an 'old pro', as it were. And I know exactly what you mean about the sedative. I have dental phobia and once paid a lot of money to have intravenous sedation (I assume it is intravenous they use here too?) and I wasn't sure I liked it. I felt out of control and more vulnerable.
Can I ask you some questions about what they will actually look at when they do it? My doc said they will look as far down as the start of the upper intestine. Is that correct? I have always had a suspicion I might have NCGS (been tested a lot for coeliac disease). Will they look at my stomach lining, and will they be able to tell if there is villi damage? Lastly, can you see the screen and see what they see? If so it might be worth staying awake for. I'd like to see what state my oesophagus and gut are in!
Yes intravenous into the back of the hand and it was strange the whole thing seemed to take seconds an if fact I was wondering when he was going to get started when he said to his staff "oh he's looking straight at me again" apparently he was almost through it and I though it hadn't started yet, even so it felt unnerving to me. Well I remember the first technician went down through the stomach, through the pylorus and into the large intestine, which even without any sedation I had no idea she had gone that far as I felt nothing apart from the obvious texture of the endoscope in the throat. Normally you lay on your left side and the screen is behind you so you won't actually see anything, that was what was cool about laying on my back for the 4th one I got to observe, he also checked for any pyloric ulcers on that one as well. Anyway it's very quick and painless, the anticipation is probably the worst part and if you ever need another one you will be a lot less worried as I was. All the best, do you have a date yet? Martin
Thanks, Martin, that's really helpful. I got an appt by phone this morning and had to pick a hospital that involves two buses and a long journey in order to get sedation. However, I now have a) a transport problem and b) an unaccompanied problem. I'm on my own and don't have anyone to go with me - does this mean they will refuse me sedation? I have been looking into getting an ambulance home, on the grounds of being sedated, but I'm wondering if they still won't accept that because I'll still be on my own at home. It seems grossly unfair that you can't get sedation because you have no-one to 'take care' of you.
I tried to get through to the hospital and got cut off and the ambulance service is mobbed because of the current shortages so couldn't get through there either. A taxi would be astronomically expensive, although I could go through the rigmarole of getting my costs back as I am entitled. Ironically, this is all adding to my anxiety! I can't even get back through to the appt dept that made the appt as their number is one of these ones you can't phone back on. Ah, the joys of the NHS....
Okay I answered you but deleted it as I've just found this PDF and although I thought you would probably be able to make your way home after observation it actually looks like you may have to have someone take you home and stay with you overnight. here is the PDF rcoa.ac.uk/sites/default/fi... sorry I can't be more help but this is one of the main reasons I don't have sedation, it is over very quickly and then you're out the door. Anyway don't worry all this will be history before you know it, keep your chin up. 😉
Yes, my only option will be to ask my ex to come with me. We're on good terms but I still feel reluctant. I'm thinking I might just bite the bullet and change the appt to a closer clinic with no sedation. Test my bravery!
Yes, the localised throat spray really does help and the endoscopes are much thinner now than they used to be also I have developed a cough when I eat (normal after an esophagectomy) and I was concerned about that on my last one but even with the tube in my throat I didn't cough once.
Funny you should say that about the coughing. I have a bad cough presently - one of the reasons my GP is putting me through this torture - so I'm worried about coughing it back up. I've been reading horror stories about the procedure on the cancer research site, so I'm thinking of chickening out again and just asking my ex if he will come with me. I may also phone the endoscopy dept on Monday and see if it would be okay to get an ambulance/taxi home if I came in alone, on the grounds that I could get a neighbour to sit with me once I am home. I don't know if they'd buy that!
Sounds like a plan, sorry I can't be of much more help, we are all anxious of this procedure the first time but all I can say is it really is not as bad as you think it will be and the endoscopic team are usually very helpful and calming, I had one nurse holding my hand through one of them 😊 very sweet.
Yes, I intend to ask outright for hand-holding. I don't know if I have one of those faces, or I just look very composed but people don't generally offer me sympathy. I have quite bad dental phobia and really struggle and I've only ever once had a nurse have the empathy to realise and hold my hand (I found it incredibly touching and remember it to this day), and this is with telling them beforehand too. I always make sure every dentist knows just how scared I am, but it seldom solicits much actual 'caring'. People don't seem to realise that phobics and anxious people revert to six years-old in threatening situations!
I've just had an ex-nurse inform me you can request staying overnight so that you can have the sedation, but while this is a last resort I imagine it will give me delays, which is just more time to worry. I think I'd rather take my ex with me!
Well as a last resort staying the night wouldn't be that bad I guess, I'm sure the team will be very empathetic as they deal with anxious people every day. I'm glad you're getting some answers finally and can see some light at the end of the tunnel. I'm happy to keep chatting too if you find that reassuring and hopefully you won't have to wait long for the appointment and get all this behind you. Martin
I've since used my local Nextdoor neighbourhood group to ask if anyone knew of any organisation that offers a service of people to accompany you on hospital trips and had a couple of people offer to come with me. Slightly dodgy because I'll still be sedated on the way home, but nevertheless very kind and a further bow to my arrow, as it were. Either way, I will be able to work out a way to get there and get my cowardly sedation and get through it.
Very many thanks for all your help. You've been great in helping me to keep a sense of perspective. Something I am all too easy to lose. I'll keep your name to hand, if I may, so I can call on you if I have any further panics. Thanks again. X
Good to hear, don't worry about the trip home you won't feel drugged or drunk in fact you'll feel pretty much normal they just like to follow these protocols in case you have some reaction to it but you'll probably be on your way home wondering what all the fuss was about.
Ah, that's good to know. I feel more confident taking a lift from a stranger if I know I'll feel sane and competent on the way back. That might provide the ideal solution. Thanks.
I have had the test recently (twice in a few years). The first time I was terrified like you but this time I wasn't bothered in the slightest because I have sedation. You are in a twilight state but do not worry, myself and both my sister's had sedation and remember nothing. There was no after effects or pain and within no time I was led back to my room and able to eat. And I admit I am the World's worst worrier and anxious about health. It really is best you not put it off but talk to the team and ask in advance if you can have sedation. I had something ....pam
Thanks, Pam. I'm in a bit of a problem area because I have no-one to come with me and I'm not sure they'll allow sedation in those circumstances, so don't know what to do now...
I see, could you book transportation to bring you back and forth then you can have sedation? My sister just told them she had someone in the taxi & at home but she didn't. I'm not Pam lol, I was saying that I had sedation called something .....pam, I think it was Midazolam actually but there is something ending in pam too. Good luck Judles
So sorry I christened you Pam. I've got a few things lined up vis a vis being able to get sedation, but at the moment I have so many medical tests and so forth lined up my anxiety has gone through the roof, so I'm just avoiding doing any of them! I now wish I'd manned up, taken the closest clinic and just gone without sedation. Oh to be brave....
Had a couple over the years but recently had one done on Monday morning . Thickness of scope is thinner now and it’s over in about 5 mins and bit of spray in back of throat and it’s really not bad and the team is there to help you
I was absolutely petrified when I had to get my first one - now had 9 - advice - ask for the most sedation possible and you won’t know a thing - unfortunately some skimp on the sedation and I’ve went through the skimping and much prefer not knowing - all the best
Thanks, Molly. I've booked one with sedation, but having problems with whether I will be allowed it as I am on my own and not sure how to get home as I am not supposed to travel on public transport - quite rightly. I remember my only other experience of intravenous sedation and you really are out of it so I wouldn't be keen on trying to manage two unfamiliar buses in a strange area.
Hi Chancery - I’ve never had a problem and always as bright as a button when I come round but everyone is different - You’re not allowed to drive - can you not get hospital transport ? Usually hospitals have transport or a charity that does transport - being on your own is a bit more difficult for these things so sympathise - hope you manage to sort something or get help as sedation is the best way to go in my experience
Yes, I tried the ambulance service today, but they are queued out and I couldn't get an answer. However, there's also the problem of the 24 hour thing, since I have no-one with me at home. I'm not sure if they will refuse me on those grounds. I think the best thing will be to phone them and find out if they will accept me just getting an ambulance home (assuming I can). I've discovered you can ask to stay overnight, but I I suspect that that might mean a big delay in getting treatment, if they don't have a bed, and they'll probably avoid doing that if they can. Maybe that would encourage them to let me go home in an ambulance!
The only thing I can add to what others have said is that at my local hospital if you want sedation you have to have someone with you for 24 hours afterwards in case you have a reaction otherwise you have to have with just the spray on the throat. Best wishes. xx
No neither do I so unfortunately for me I don't get a choice, I have Barretts Oesophagus so have to have one every 12 months From my experience it does seem to depend on the person doing the endoscopy as to whether you have a good experience or a not so good experience. I do hope that yours is a good one. Best Wishes. xx
Oh, that's worrying. I hate leaving things in the hands of others, being a professional worrier means you want to control everything, including others' behaviour! But I think I will probably elect to go to a closer clinic and just have it done without. Easier than all the faffing involved in trying to get someone to come along.
My doctor applied for me to have a scope at the beginning of September. I went onlin to choose and book and there were no appointments available. I got an appointment through the post in October to say I had a TELEPHONE appointment the middle of January with a consultant. Not sure how they can look at my insides through a telephone!!! I believe your doctor can ask for an urgent referral if he is overly concerned. It may be better where you live.
That beggars belief - I have visions of them sending the scope down the phone line. Very Lewis Carroll! I have my appt now, but I may have to change it as I don't have anyone to come with me.
Hi I’ve had lots of endoscopy because I have Barrett’s esophagus, so I have no choice , but I can say it’s not as bad as what you might think , I always go for the sedition the throat spray is awful, and it’s over before you know it , I can’t remember anything about it, then have a cup of tea after a while, then you can go home, so please don’t worry I’m sure you’ll be fine 😊
Hi Angela. I take it you always have someone with you, or is it possible to just sit a couple of hours and then go home on your own? I don't have anyone but I really would like to have the sedation. I'm quite happy to drink some coffee and sit for a couple of hours, just so long as I can have the sedation.
Hi there, yes I have my husband with me, I’m sure if you explained to the nurses they would let you stay awhile longer, and that you would like the sedation, I know you aren’t allowed to drive, maybe you could phone for a taxi , good luck I hope everything goes well 😊
Iv had quite a few endoscopies and untill my last one in June I had sedation but this time I had nobody to take me so the throat spray was the only option. I found it surprisingly easy I was given the advice to open my throat as if I was yawning deeply and it worked really well over and done with in a few minutes I had the results before I left the department. I had be worried before but the staff were kind and supportive. Please contact the department and tell them about your fears I'm sure they will be understanding as they deal with those concerns every day. Good luck. You will be fine
I wasn't allowed to take a taxi home as there was no responsible person with me. You could try for a patient transport ambulance I was not eligible in my region so I opted for no sedation as I didn't want to wait for another appointment. Its all very scary but when you have actually had the procedure y realise its not so bad sfter all.Good luck.
Yes, I did wonder if they would allow for an ambulance, and I could arrange to sit with a neighbour when I got home so I'd be covered there. I wonder if they might allow that. My fear is that one nurse will say okay on the phone but when I get there on the day an entirely different staff member will say no, not okay and I'll find myself in your position of having to do without. Nothing is more guaranteed to make me have a panic attack than a sudden change of plans so I don't really want to put faith in a phone conversation!
I've had a couple of strangers offer to help on my Nextdoor forum. Not ideal, but maybe workable. And my ex has said he might be able to come along for me too. So all told I should be able to work something out. Thanks for your help.
Good luck and try not to worry too much about it. That easier said than done I know but it will be over very quickly. It is really important to have tests doneYou have my thoughts and prayers.
I have had this with and without sedation but last time I was at the community hospital they said they don't do sedation. If you get very anxious then check that where you are going will do it. They won't let you go home alone or on public transport though so accept any help and company offered. It really isn't too bad and they do hold your hand and give reassurance
Please, please do not worry… easily said, of course. I have had five … my advice would be to definitely take the sedation route, particularly as you’re (understandably) anxious. I’ve never had one without, so can’t compare. If you do have to spend the night in hospital, it is just one night; I did this in one occasion. It will all be fine & you’ll wonder why you were so concerned. Best wishes.
Thanks for that Susie. I got my hospital letter today and I have the choice of getting it done nasally, which I am definitely doing. I hope to get a lift to go, from someone who has offered locally, but if that falls through I will just be brave and go sedationless, or rope in my ex. I'll call it a life experience!
I usually had Midazolam and Fentanyl which worked well. Midazolam alone for me doesn't work as a sedative. With the former mix I'm pretty much out of it for the procedure and have no memory of it.
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