So endoscopy is inevitable, please help

[jessieblue]

Hello, I see a gastroenterologist on wednesday having tried to avoid doing so for 2 years! I know my symptoms mean I have to have endoscopy and with a fear of vomiting, I am petrified, but resigned that I now have to have it as I cannot go on like this. My anxiety is horrendous just waiting for the appt. I have acid reflux even though I am on omeprazole. I get burning, bloating, feeling like something is stuck just above my stomach. Pain under ribs on left side, sort of burning/stinging pain and look like i am 9 mnths pregnant a lot of the time. Nausea and burping etc etc.

I am so scared I have stomach cancer. I know being on ppis can be a risky long term thing and also if I had damage to my oesophagus maybe it has become cancerous. I am so sure they will find something sinister. I just wish I could see this as a way to getting better rather than to certain doom and a diagnosis that will change things forever.

Does anyone have similar symptoms? Anyone diagnosed with cancer? I dont know what to do to prepare myself and not sure I will make it to the test day before falling apart. I keep feeling like I will have to beg the doctors to do something to help with my state of mind as I dont know which way to turn.

[snowgoose]

Hi Jessie :)

if you scroll down on the forum main page you will find procedures section ......and endoscopy is one of them ..........it will help you hugely I think to read .

Stomach cancer is very rare .but I know that wont help me saying this .
have you asked for sedation for the procedure ?

dont fret jessie ............so many on here have had this done and been very relieved to know it was not as bad as they thought . and it has been the anxiety that has caused the symptoms .ibs etc .

others who have had it done will be along soon to reassure you ..just wanted to reply cos it is hellish being so scared ........hug :hugs:

[jessieblue]

Thank you so much for replying. I have been reading some accounts on here and some are encouraging, others arent. It is just THE ONE test |I have always worried about having, the one, i thought I simply couldnt withstand. I cant believe its now got to be done! I am really trying to accept it has to be done and get through it. If I can then I will be proud, but so frightened I have something terrible. Just want to put my head in the sand.

I hate this fear and anxiety every day its so exhausting. Thank you again. x

[snowgoose]

Hi Jessie

have you asked for sedation ? let them know before hand and it will be done .

please dont terrorise yourself with imaginings . You will be ok honest ......have same with chest x rays ........and found on the day that the panic before was far worse than the actual day of procedure ..........kind of calm descended and told myself that within a certain amount of time it would all be over .
if your doc thought you had stomach cancer you would have been admitted immediately xxxxx

[jessieblue]

I will ask about sedation. I have not seen gastro yet, first appt weds. I know she will order endoscopy as doctor has already told me so. I tried to explain my fears to him, but all goes over their heads!! I dont see why I couldnt have barium x ray first, but apparently they prefer the endoscopy, so thats what we get! As long as doctors are happy eh?

I think i will have to have sedation as there is no way I will be able to tolerate the procedure fully aware. I have trouble at the dentist even with a drill or cleaner in my mouth let alone something shoved down my throat. The trouble is that because I have a phobia of vomiting, it is all very complicated. Alongside the usual heartstopping anxiety that we all suffer, I have the added fear of gagging, nausea or god forbid vomiting! Sincerely, I would rather die than be sick, silly i know, but it is a true and morbid phobia. You can see why THIS particular test is one that I find the most difficult to tolerate. If i could have GA, it would be ok, but I understand this is not possible.

Also, even taking the sedative causes a problem with my phobia, as one of the side effects is nausea and vomiting, so medication itself is a real problem for me. On the other hand if I dont get this test, I will never find out what is wrong and maybe get some help and therefore, will have to suffer nausea and burning and pain for evermore! Its a bit of a no win situation.

I do appreciate your comments and I am sure when its over I will feel better, it just seems a really big mountain to climb right now.
xxx

[snowgoose]

oh jessie :hugs:

there are posts here by a lovely lady who had exactly the same horror and emotophobia that you are experiencing . so hope she sees this and reassures you.

docs dont listen much about anxiety :mad::weep:
and you are not silly with phobic fears at all ........it is horrid .........and do understand .
put me in an airport and see how I react ............ :weep:
anyway ..sedation today very rarely causes vomiting honestly ......things have moved on in that field . you will feel a bit floaty and nicely relaxed I promise you .


and next thing is it will be over ......and a huge mountain climbed and WON . XX

[jessieblue]

Hi Dahlia and thank you so much for all the information. Reading your post has made me feel stronger and that I can get through this. I know I just have to be brave and get it done, cant go on like this running away forever. It really does sound doable the way you describe it. Will I have to have the laxatives if I dont need a colonoscopy. All my symptoms are upper GI, I do get a little gas and bloating but this is normal for me and always has been. The lower end is ok, although I have had piles and constipation in the past, but again normal. I wont be mentioning this end to the gastro at the moment, one thing at a time eh? So will I need the laxative for just the upper gastroscopy? Does anyone know? Also looks like I will have to stop medication which is a worry as my nausea will increase as I get more horrid acid rising in my throat. This may be the worst part of it in fact.

Again, I so appreciate you all taking the time to reply. I have no one to talk to that has any idea of how I feel and I feel so much calmer just visiting this site and knowing I am not alone.
xxx

[jessieblue]

Well, I saw the gasto doc today. Very lovely she was too. She is also writing to my doctor to ask him to refer me for CBT and counselling for my anxiety and depression as she took a long time to listen to what has been going on with me in the last 3 years. My doctor hasnt really adressed my anxiety or depression even though I mention it every time I go in in the hope he will advise me how to get better. Oh well, maybe some help is on the way.

I do indeed have to have the endoscopy, as expected. They are sending me an appointment. It will probably be in the next few weeks. I didnt even bother to argue about it as I knew it was inevitable but did tell her I was very worried and have a phobia of vomiting and gagging. She was trying to tell me to have it without sedation if I was anxious as she said sedation can make you lose control of your body and do strange things (WTF?) I didnt let her get any further before telling her about the phobia, then she said oh well yes, you will need sedation then and throat spray! I dont like the sound of this as I thought sedation was supposed to be peacefull blissful sleep and now it sounds as if |I am going to have something similar to an epileptic fit while under it! This is a very scary thought, I was told by my gp I simply wouldnt know anything about it at all, now I am not so sure, just because you dont remember it doesnt mean you dont know about it at the time does it? Worrying. They cant give general anaesthetic apparently, as they have to protect the airway, but I have heard of some people having a general?? Does anyone have any expereince?

So, I could well be the most unstable patient they have seen in a while. The thing is, I come across as very controlled and calm, I tell doctors I suffer with anxiety, but I hide it well, as I am embarrassed. That is until I have a full blown panic attack, which could well be the case on the day in question! Then, it will be no more Mrs nice guy and woe betide if they try to hold me down, I am pretty strong! They want to be sure to give me a good dose of the horse tranquiliser or I may render the damn torturous equipment totally unusable! Also, I will need to be sedated for a week beforehand, otherwise there is no guarantee of me actually getting to the hospital at all. I will have the number on speed dial ready to cancel!!

Oh well we will see if I survive it, time will tell. Thanks for your support, feel free to keep posting as I am going to need all the help I can get in the build up! I will update with the date when I know it.
xxx

[snowgoose]

hello Jessie :)

you will be fine with sedation . and certainly no fits !!! who the hell told you that ?
think a few drinks and feeling mellow........that is the feeling ........and no danger whatsoever Jessie .

your doctor knows now your fears and will put in plan accordingly. I so understand this fear I really do ........you will have a lot of relief from the outcome to know what is making you feel so bad . and it will not be cancer .

also No WAY can they restrain you or force to undergo this procedure .
this is your choice and even under sedation if you say No .then it will not go ahead . this is law.

I will make sure I am around on pc the day of the endoscopy if you need to pm me for support . let me know day and time if you want to .

you will do it .......... :bighug1:

[jessieblue]

I am really overwhelmed by your support. For both of you to be so caring is really touching, I feel I want to do it just to make you both proud of me!! I will let you know the date and it will be a help just to keep in touch up to the day of the procedure. I am bound to have some wobbles beforehand!

It was my gastro that said about the sedation! She didnt actually say I would have a fit but she said it was better not to have sedation if I was anxious as the sedation can make your body do things you cant control - I interpreted this as bad and imagined flailing about as if having a siezure - I didnt really ask her any more as I didnt really want to hear it. When I stopped her and told her about my vomit phobia, then she said, oh well then I will use sedation and also the throat srpay. Not sure if I am pleased or not but I was surprised that she thought it might be best for an anxious patient to undergo without sedation!!

Dahlia, what did they actually diagnose you with in the end and are you feeling better after treatment. My acid has kicked up badly today inspite of my omeprazole, could this just be the anxiety? Why do I seem to produce endless stomach acid??? I just hope I dont have any cancerous changes, cant help feeling I must have done some damage with all the tummy acid floating about.

Thanks again girls xxx

[snowgoose]

Hi :)

am about every day Jessie usually .....so not far away xx

Dahlia is the one who knows .......and take heart from her experience and advice

you will do it my love ........you will and be amazed at yourself :yesyes:

[Dahlia]

Well, it was Snowgoose's and Shoegal's wonderful support that got me through :)

[mirena]

Hi Jessie,

A year and a half ago I went through exactly the same situation you are experiencing now. I fell bloated most of the time and started having stomach pains - straight away, I started to think 'What if it's stomach cancer?!' and quickly convinced myself I did have stomach cancer. I went for my first endoscopy in December 2010 -a few weeks after my symptoms started- and the doctor found I had an inflammation in the lining of the stomach and prescribed omeprazol. They also took a small sample of the stomach tissue and although tests did not provide any alarming results, I would now worry that by worrying I was going to make myself develop stomach cancer...

Eventually I managed to relax and after 4 months I went for a second endoscopy and the doctors did not find any inflammation, everything looked perfect. Looking back I am 100% sure the inflammation was caused because of the stress I put myself through by thinking I had cancer.

The first endoscopy wasn't fun, I am not going to lie, but hey, I survived! ;) Five minutes and it was all done. I did panic a bit during the procedure because I did not know what to expect, and I had the feeling I could not breathe and did not how long it was going to last, and well, it is a bit intrusive and makes you gag. The second time round I was a bit anxious because of the first experience, but it turn out to be just fine. I just kept on thinking, well, it is going to be over in 2 minutes, and it was! It really, really helped me to concentrate on my breathing. Really, don't worry; it really is not that bad as people think. In fact, if I had to have one done tomorrow, I would not even spend one minute of my time worrying about it. :)

[jessieblue]

Well, I am a little iron deficient. I am actually anaemic, or i was at last blood test. This is possibly because for the last 2 years I have had pretty severe bleeding due to peri menopause. I had a polyp removed last october and still bled all the time until I had mirena coil fitted in March and now no more bleeding, instead my breasts are so painful I wake up even turning over in bed at night, I have bladder irritation, weight gain and anxiety thru the roof! Not sure this is progress but I guess its better than bleeding forever!

Also on reading a lot about it apparently omeprazole long term can cause you not to absorb vit B12 which can lead to anaemia (or something like that) So possibly this is also to do with my anaemia.

One thing I just dont understand about doctors though. I have put off seeing a specialist for nearly 2 years because I knew they would insist on me having this test. If I had something serious I could die as a result of the delay, yet the fear stops me from going, I cant help it it just does! Why are doctors so unadaptable? Why couldnt they send me for a barium x ray first in case that was enough to diagnose my condition. I understand it isnt as conclusive, but it may suffice. I had one 30 yrs ago and would go for this tomorrow, no worries. If I have a haitus hernia or reflux or ulcer or even a tumour this would show up on barium x ray. Why cant the doctor try this test first considering my feelings. The risk is always going to be that I dont end up going somehow. I mean I will try to, but I never know what will happen. When the panic sets in my fight or flight reaction takes over. So my point is wouldnt something be better than nothing? Why cant they try to be more understanding? I really also feel that I am being forced into this test, which makes me resist it even more as I feel totally out of control and as an axiety patient this is also a terrifying thought.

Mirena, did you have sedation for the endoscopy? If I experience any gagging the deal will be off I am afraid, my phobia is so powerful it keeps me from doing everyday things. It isnt just a slight fear it is a life changing phobia that has totally ruined my life, so to have to go through it when I can avoid it is just a rediculous thought. They better have some good drugs in the department that day!

[mirena]

Hey Jessie,

No, I did not have any sedation just because I did not want to, but it is offered if you need one. You see, for me is the opposite case, the thought of being sedated makes me a bit uneasy, I guess because I have never been sedated; and on the other hand, I don't have any problem with gaging, in fact it gives me a sense of relief ;) I know, odd ;)

Don't worry, everything will be just fine!! :yesyes:

[jessieblue]

Well, I thought it would probably be due to that, although you obviously have a better understanding of the conditions. I need to get my blood checked again to see if my iron has come back up since bleeding has stopped, but guess what, too scared to in case it hasnt! Health anxiety is a drag isnt it?

I am struggling today girls. I have been really unwell last 2 days. My acid has gone ballistic, I just cant control it and I am so sure i have something serious now or I will have by having this ongoing acid burning my oesophagus. I must admit, I dont know if I can get through this. Its not just the procedure but the time in between. I havent even heard from the hospital yet re an appointment and that is with private insurance! How will I get through the next 2, 3 weeks or whatever and then through the procedure itself? Also, if this acidity is due to stress, or even just imagined or exaggerated by my own mind, then there will be nothing that can help me anyway. I will have gone through all that and still feel like this every day of my life. Whats the point?? I feel really low and am not really able to go about my normal day. I really think I am going to end up being admitted to hospital with my anxiety and depression as I struggle everyday just to cope with life. I dont think I can take much more and do feel pretty desperate. Maybe I need to tell the doctor how really desperate I feel. I am just too ashamed to do it.

[anxietyoverload]

Hey, try not to worry I went through the same as you, fortunately I was on tablets for 6 months and it went, I was worried I had stomach cancer, but my friend died from stomach cancer when she was 13 and she didn't have these symptoms, she was in hospital she was in so much agony, hope all goes well, I'm sure they will sort it for you :) xxx p.s didn't want to scare you with that message I just meant that the symptoms are different even though if you look online it mentions cancer if you are a long term sufferer of indigestion and things, it's so rare! And the Internet isn't a doctor xxx

[jessieblue]

So, endoscopy appointment is tomorrow! I am obviously petrified. I can only try my best to get the sedation and see what happens, but if I know anything about it that will be it. I am not fighting my way through the gagging, no way, so its up to the medical staff now to do their job and get me through this. Also petrified of what they will find and the time i will have to wait to hear what is wrong with me. Horrid times. Feel very low and hopeless. After this what then, treatment doesnt work, so whats next surgery? just got to live like it, I dunno, all seems pointless right now.

Thanks again everyone for all your contributions, it been really helpful. I am going alone tomorrow, so having your help is great. Havent even told my husband yet as he isnt too great when im unwell, so its a lonely time for me!

[snowgoose]

HI Jessie
So sorry you are feeling so wretched and scared :hugs:
Is there no one who will go with you ? it seems awful you should be alone .tell your husband Jessie ...........he must know something is up and will be torturing himself maybe wondering why you are even more distressed .
remember you are in charge here and can say no if it gets too much . I do believe that the staff will look after you well .......just make sure you tell everyone you are in contact with that you need sedation and anti emetics .......and gentle kindness . It is over very quickly .

I am around later morning if you need to vent Jessie or need a cyber hug and hand hold . I will be thinking of you and sending lots of positivity to you .
By this time tomorrow it will be over and then with a diagnosis you can be helped [and it wont be cancer ]

hold on and breathe deep xxxx:bighug1:

[jessieblue]

Thank you, my lovely, you really have been such a help to me. I cant thank you enough! I didnt want to tell my husband this time as I have had so many things in the last few years, I think he has kinda had enough of it all. I dont know why, but he just seems to go cold on me while I am going through these tests. He doesnt want to talk about it, so he just never mentions it and if I do he changes the subject. I decided this time I would rather have him be normal around me and have the comfort of that rather than feel the coldness and loneliness of when you expect someone to understand and comfort you but they pull back. It has worked well so far and actually I am not showing any signs of being more distressed. I feel calm and resigned at the moment, but still not sure I will go through with it, but as agreed I will go, get the ultrasound first and the sedation and see what happens. Thats the deal I made and I will try and keep to it. Also he is busy with work and wont really want to have to make changes at short notice. No I will go alone and I will call after and get someone to come pick me up as I doubt I will be able to drive. Also then no one will see the drama that may ensue and also if I bottle out only I will know!!

That is why your support is so important to me, please never forget how you helped me.

xxx

[snowgoose]

ah .......I understand about your husband . my son is very similar in going very cold if my anxiety crops up .............it is his way of coping and protecting himself . So get it x

take the day in small chunks ........I found thinking only a segment at atime helped me . eg getting up and going outside to breathe the fresh air and shower ..tick it off ...........the journey .....tick ........once in hospital and dept .tick ............the rest will follow I promise better than you think :hugs:

I have read here that the docs can reassure you after the endoscopy re what they saw . so hopefully you wont have to wait and worry .

off for bath now .....hope you do same and have a nice book and cd to listen to .
xx:bighug1:

[jessieblue]

Well 1 hour before I leave for the hospital. Still cant imagine getting this done, so we will see what happens. I feel reasonably calm, wierd, but very alone and very sad. My husband decided late last night he had to go in to london to work (he usually works from home on a wednesday) Although I was planning to go alone I assumed he would be here to look after my son, who is still sleeping. He is supposed to be getting home soon to do that, but I know he will be late. Just another worry on the worst day of my life and I didnt want my son, he is 12 to be alone, especially in case something went wrong and the hospital phoned here .......... you know all the thoughts that go through your head. Just hope I am ok and safe to come back home to him.

Do you think I will be able to drive myself if I wait there for 4 or 5 hours? Will the hospital let me get a cab home?

Well thanks for everything, I guess I will soon know.
xxx

[snowgoose]

hope you felt the support from here on your shoulders when you log in :hugs:

let us know how you are if you are up to it Jessie xx

[jessieblue]

Hi, well I am back and still alive! I thought I would feel more relieved at getting through it, but I feel really down. I got through the procedure ok, well okayish. Had a small panic attack and started crying like a baby when they started the procedure and I realised the sedation wasnt going to put me to sleep! They just soldiered on regardless and thankfully they did otherwise I definitely would have walked. It was more painful than I expected. As well as the gagging, it really hurt my throat and tummy when they pushed the gas in and took the biopsies. Its really quite violent, they did hold me down so I didnt hurt myself and they just kind of shove the thing down, but at least it is quick. It wasnt very nice, but it was doable. I am really glad they just carried on because it was over very quickly and I did feel a little proud. I felt cheated though as I had to stay for a few hours because I had had sedation, yet i never even had a little doze! I was looking forward to the drugs that switch the world and my head off for a few minutes! I sneaked out and drove myself home when they discharged me as it seemed rediculous to call someone to pick me up when i didnt feel the least bit drowsy. Date rape drug my a**!

I now feel really worried about what they will find. She said I had gastritis, which has worried me as now I know i have something wrong with me and that is despite the medication, omeprazole I have been taking. I wonder why I am still making so much acid in spite of the drugs. Have to wait for the biopsies to come back in 3 weeks and see what they have found. I was really hoping they would say everything was normal and that it was all in my mind or just my stress. But not so, I do have a condition so have to see what else they find before they know how to treat it I guess. I know what will happen, i will have to have repeat endoscopy to see if the gastritis has cleared or got worse or whatever, or manometry. Just know this wont be the end of it!!

Thanks again snowgoose, your words of comfort were with me throughout and I am very greatful for that.

[snowgoose]

hi Jessie ...........am appalled at how you were treated .
got to get my thoughts together ............am just very thankful you are home .
and hey you gal :hugs:..................so so proud despite it . x

[jessieblue]

Thanks sweetie. x Its not that they werent kind, I mean I can see why they have to do it because otherwise people would just call a stop and then have to reschedule and its a waste of everybodies time. If they had stopped I would have bottled it, I couldnt say anything cos of the tube and the gagging, so they carried on, but it was right to do so, cos it was soon over and I was greatful it was done and i dont still have to face it. They were all kind and held my hand. I was on my side and they cleverly put my lower arm across my body and held it there which kept me sort of cocooned, they talked to me all the time and were very reassuring, but they just got on with the job. Just typical that the medazolam didnt work for me, i had 3 mg?? 3 something anyway and I think something else, she had told me she would give me a large dose so I was well asleep. The nurse said bye, have a good sleep, see you when you wake up, but nothing, not even a bit sleepy!!! Just my luck I guess, but now I know next time will be GA or not at all lol

Worried about the gastritis now tho!

[honeyp1e]

Hi hope your feeling better now? when do you get your results ?

I have all these symptoms - I see a gastroenterologist on wednesday having tried to avoid doing so for 2 years! I know my symptoms mean I have to have endoscopy and with a fear of vomiting, I am petrified, but resigned that I now have to have it as I cannot go on like this. My anxiety is horrendous just waiting for the appt. I have acid reflux even though I am on omeprazole. I get burning, bloating, feeling like something is stuck just above my stomach. Pain under ribs on left side, sort of burning/stinging pain and look like i am 9 mnths pregnant a lot of the time. Nausea and burping etc etc.

I HATE is so so much as i am just feeling anxious/sickly everyday as well and to top it off am also emetophobic (this just seems to make everything worse) i have canceled the endoscopy twice because of my phobia but i really need it done i don't think i have stomach cancer or anything i no its just gonna be to much acid or something but why do we have to suffer everyday...
do you find you feel sick everyday ?? i do & i hate it of i get a tight anxious sickly knot feeling in my belly as well everyday !!!!
I hate the pregnant look as people stop me in the street who i no and will ask me am i pregnant :weep:
I have had loads of tests ultrasounds/ x-rays/ bloods etc all came back clear well i did find i am intolerant to wheat but i havent eaten that in over a year i have been gluten free but i still get all the symptoms :huh: so i dunno what it can be ????
i just hope that sppn i will find out my doc has booked me another endoscopy but i am having it under general anaesthesia :yesyes: as i was just awful when i went there for my 2nd appointment i just cried so much and explained about my phobia of vomiting even the doc said i was to distressed to have it done xx

[jessieblue]

Awww honeypie, your symptoms are exactly the same as mine. I get them at different times sometimes only one symptom, then that is replaced by another sometimes 2 or 3 together. The feeling of something stuck just above my stomach is my most common. Stinging/burning pain just under my left ribs and in the middle there. Also the pregnant thing, seriously i do look like i am 9 months gone most of the time. Nausea at some time every day, without fail! You are right to get the endo, but so good you are getting the GA. I will insist on this if i have to get another and I felt exactly the same desperate to get some help so resigned myself to having it done. Tell them about your emet and ask for stemtil with your GA, it works wonders and I have always been fine after a GA, in fact its a great feeling, just blacking out and coming round when its all done, the relief is immense. You will be fun, I promise, its such a short procedure you wont need much anaesthetic, so you will feel fine anyway.

Thank you Dahlia and yes, I am so glad its over, but nervous about the results and if my gastritis will get worse and make me sick all the time. Typical emet eh?? Now I know there is a reason, I feel more fragile. Wish I didnt know really because I am on the same treatment just more of it, but then I will probably never be able to come off it. I dont know maybe gastritis is often found on endoscopy or maybe they tell you something like that so as to give a reason for soing the sndoscopy in the beginning, I dont know, but I dont like any of it. I told the doctor of my fears and I think she was really mean not to give me more sedation if the max dose is 5mg. I am tall 5 10 and weigh about 11 1/2 stones so I would need a big dose I am guessing. What was wrong was that she only gave me the sedative about 30 seconds before shoving the scope down my throat. Didnt wait to see if it worked or if i needed more. Just got on with it. I think that was wrong because although its over with quick, I will never have another now unless under GA, no way and now I dont trust doctors at all, because I was told I would not know about it at all by several of them. Also, if I was awake, surely I could have been given a chance to "swallow" the cam myself, instead it was just forced down, my tongue is all scraped and red raw and I imagine my throat is the same seeing as that is really sore and swollen too! For an anxiety/depression patient I dont think it was very kind. xxx

[stuart39]

ive had endoscopy with just a little sedation and throat spray and would prefer to have a general if i had to go through it again.
the camera is quite large and i was gagging a fair bit. its true that if you try and relax its bearable but flinch a bit or get that gag reflex and you want to cough the thing up. can you imagine having it permanently down your throat???? that would be dire anyway you have to be careful about discharging yourself after sedation or a general and driving yourself home is risky.

[stuart39]

actually youd think the size we have mobile phones now compared to the "bricks" people carried in the late 80s that the endoscopes would have shrunk down to an ultra thin piece of kit by now. i suppose its still as thick as it always has been so the doctors can maneouver it around your system easier???? surely they could make thinner scopes without losing the guidance control.... most people could probably go through with the procedure under local.

[Davinci817]

Glad it is all over and done with for you. Hopefully there will be nothing more to worry with besides the obvious gastritis.

Having my endoscopy on Thursday coming up. It was my understanding that I will be totally knocked out to the point they will not release me unless I have a driver and someone that will spend the next 24 hours with me! After reading this and getting my procedure paperwork out it states "An anesthetic spray will anesthetize the throat and an intravenous sedative will either make you sleep or become very drowsy".....Very drowsy isn't good enough lol. Sure hope they don't leave me awake like they did you....not sure my mind can handle that after all of the sh** I have already been through with Doctors! Urgh!

I do have that little fear ticking away in my brain "what if they find cancer" trying not to dwell on it and remember this is being done to make sure everything is okay after 5 years of stomach issues that were not treated in a timely manner.

Thanks everyone for sharing your experiences! Good to know they aren't all bad!

[snowgoose]

Hi Jessie
hope you are feeling better now emotionally and your tummy is settling :hugs:
been pondering on this sedation disappointment .
I know where I worked there was a protocol in the hospital trust that Medazolam could only be given intravenously if an anaesthetist was present . probably different trusts have different guidelines . people have different tolerances and as outpatients are unknown . Not making excuses at all here ..........just trying to figure out why some people have ok experience and others not .
It is sedation ..........and could cause airway problems if too much given [hence anaesthetist to step in ] ..............so I guess docs are reluctant and maybe underconfident to give more than minimum dose sometimes .
it may well depend on the area you live in and what hospital trust and of course the doctors experience .
Best anyone having this done is to find out before exactly what is given and how they judge if the dose is right for you .

take care all xxx

[jessieblue]

Hi and thanks everyone. Snowgoose, I went privately on medical health insurance and to be honest have had some bad care in this hospital before. There was no anaesthetist present and the more i think about it the more i see that the doctor was pretty hurried and I dont think she was overly interested in the fact that i had concerns. You see, she did the canula herself and she didnt give me the sedative until i was in the operating theatre and on my side and with the throat spray and mouthpiece in. The thing is that she didnt give the sedative time to work, she administered it and literally shoved the camera straight down my throat . I was really shocked that she didnt even seem surprised that i wasnt asleep! Also what was strange was that I had also been told that the drug erases your memory, not true, i remember fully and also she spoke to me when the procedure was finished about the gastritis, so she obviously knew i was awake and fully coherent. No enquiry as to if i felt sleepy enough or anything. I am actually quite angry now, because i feel quite violated. I explained my fears and she didnt even give me an anti emetic, when i asked because she said it wasnt usually necessary. I am actually not really sure if she even gave me the sedative at all seeing as she tried to talk me out of it at the initial appointment. Although i got through it and its over, i now feel very untrusting of doctors and i definitely will not have another procedure like this again. Therefore if i need monometry or a follow up endoscopy, what will happen then? I think doctors should respect the fact we put ourselves totally in their hands and should work with us rather than take control away from us, especially when ptient is feeling anxious.

If you are going for an endoscopy make sure you will get the adequate sedation beforehand, because I said i would not go through with it if i was not totally asleep. I didnt actually have a chance to stop it as they took total control, which is wrong. I should have been more assertive beforehand and not so meek. Also should have voiced my concern afterwards, thats why you should have someone with you to speak up for you. I really hope you get better care and I am sure you will, let us know how you get on.

I know driving is risky, but I swear I was not even as drowsy as I am most mornings. I didnt even have a nap, not at the hospital, nor at home either. Thats why I drove because I was stone cold sober! I also agree I cant believe they cannot make the camera thinner, they must have thinner tubes for some procedure, what about cystoscopy where they pass a camera into the bladder? I am guessing this passage is much smaller and therefore smaller kit??

[snowgoose]

Hi Jessie:hugs:

the more I read about your experience .......the more horrified I am at your care .
I implore you to see your Gp and have a talk about this .......and have this recorded in your notes . hopefully your Gp will make some enquiries on your behalf. I know with anxiety making a complaint is the last thing you may feel up for at the moment.
I feel so sad this has happened and has naturally made you mistrustful of hospitals .
can I ask if this was done in an NHS hospital or a private one ?

so hope you get some answers xx

[stuart39]

hi jessie
youd be surprised about the size of the flexible cystoscopes. they aint as thin as you would expect them to be considering where they have to put them!!! but generally you dont feel them like the camera down the throat! you just feel a slight sting at the entrance. ive had 3 of these and will be having a rigid cystoscope this friday (another problem altogether but ive never had any bad experiences with any of my waterworks examinations/tests) anyway they tend to be about the thickness of a mcdonalds drinking straw. GI endoscopes are just slighter thicker than a pen as instruments and materials can be passed through them. with flexible cystoscopes its basically just a camera and if any biopsies or instruments are need to be passed through then they would a rigid larger version under general anaes.

[jessieblue]

Hmmm, I was due to have cystoscopy but bottled out of that too! Had urodynamics and that left me very uncomfortable as I had a painful, inflamed bladder condition. It seems bladder conditions often go hand in hand with stomach problems. I wonder if all these things could be truly anxiety driven??

Snowgoose, I had it done privately. I really wonder sometimes if private care is worse than the NHS to be honest. I mean everyone is very pleasant and you dont have to wait around too long etc appointments are quicker, but the general level of care isnt always so good, also hygeine levels can be poor too. I will mention my experience to my GP, as I had told him my fears about sndoscopy and had said I couldnt have this test done. He had told me he would send me to a kind gastro! To be fair, she was very nice, but I dont think she had much time for the anxiety. She didnt look like someone that had experienced one anxious day in her entire life!

I felt very uncomfortable with the way you get pushed into having a gastoscopy from the beginning. I now know that doctors are told by NICE that if they are going to prescribe ppis long term they have to do a gastroscopy to rule out certain things. Having voiced my concerns about the gastroscopy, I find it incredible that I couldnt have been offered other tests first, such as H pylori breath test, barium x ray, ultrasounds, even MRI, to rule out cancer and such like. Yes in time I may still have had to have the gastroscopy, but maybe not. Especially if my problems are anxiety driven, maybe a barium x ray that ruled out cancer would have settled my mind and eased my symptoms. I felt I was forced into having this test so the doctors could tick their box and cover their backs. No thought has been given to my fragile staste of mind and considering the terrible time i have had recently with my mother's death, right now I would have been better without the extra stress. What has happened to doctoring these days. Why are patients just a set of protocols now instead of individuals? It never used to be this way, being sent for tests to look for cancer for practically everything you show up with. I think doctors need to reinstaste some common sense and look at everyone as unique and not just follow the same course of action every time.

[eight days a week]

Hi Jessie,

So sorry to read your experience was so rotten...

I'm not sure if you've read my post on your other thread about this.

You would know if you'd had the sedation in my experience, there was no way I could have driven. I was walking a bit unsteadily and felt like I was floating for the rest of the day. It would have been as bad as driving drunk.

I really wonder if you had it at all? I never expected to be asleep, but it was like one of those very deep dreams where you don't know if you're asleep or awake.

If I was as upset as you obviously are, and have every right to be, I'd discuss it with my GP but I would think of contacting PALS (is that still the complaints process?) to make a complaint. Not everyone wants to or feels they can, of course, but I would, definitely.

To be fair, when I had mine it was very businesslike, very quick, 'in and out' - BUT they did check a couple of times that the sedative had worked and I was alright, and then a couple of times during the very short procedure, and it sounds like you didn't have that at all...

My doctor came out about ten or fifteen minutes after to tell me the results - the sedative is powerful but fairly short-acting to such an intense degree.

Amongst all this please don't forget that the most important thing is that you've had it done. The other tests don't show everything an endoscopy does, that's why they have it! So, while it was really unpleasant (when it shouldn't have been) you now have had the best test to potect your health going forward :yesyes:

[snowgoose]

sorry Jessie
from my previous post it appeared that I hadnt taken notice of you having this done privately . sorry x
I was clumsy in my writing so guess what I was trying to say was private work can be done in an NHS hospital or a private one like the Nuffield /Bupa ones .
In a large hospital there is support always somewhere if something goes wrong .
an anaesthetic team /crash team .......lots of equipment etc.
in a private hospital the support of Intensive care /anaesthetists is non existant unless surgery is being carried out .........in my experience anyway .
so I wonder if your care has been compromised by this state of affairs .
Eight days a week mentioned PALS .........good advice .
and to be truthful anything else cropping up after initial consultation I would have done in NHS hospital .
I do apologise if I have upset you in anyway .:hugs:

[jessieblue]

Oh gosh no! Snowgoose,you were my greatest support, you havent upset me at all. Please dont think that. You have been there for me before and after and please dont feel you have to appologise for the care I got in any way. As I said I went privately, thinking this would be better/quicker/more individual, whatever. Obviously not. I did tell both my GPs, 2 of them at different times, maybe they should have advised me better as to who to see and whether i should have gone NHS for better care. Also the gastro consultant knew my fears and even suggested writing to my GP to advise him I need counselling for depression/anxiety!

I felt absolutely NO effect from the sedative eightdaysaweek. Not sleepy, not drowsy, not woozy. I got up myself and went to the toilet, got changed and was reading the paper by the time the nurse came in to check on me about 20 mins after getting back to my room. I didnt even have a doze! But the doctor knew I wasnt asleep as she told me when to make the appointment for and never came to see me when I was back in my room, which surprised the nurses! I made the apointment for 3 weeks time as I was told, so nothing wrong with my memory! I really dont think I had a proper dose of sedative and I dont think she wanted to bother with the complications that may arise. I just got the feeling she was going through the motions. The first needle she put in punctured my vein so she put a second in in my elbow. All I know is she didnt even wait to see if it affected me and if I was at all relaxed before starting the procedure. Almost as if she didnt expect the sedative to do much herself.

Thanks everyone for all your help and support, it really has given me somewhere to vent. Thanks for all being there for me and snowgoose, a nurse like you is truly worth their weight in gold! Dont ever forget that. xxx

[eight days a week]

Jessie, that seems completely irresponsible, negligent and unprofessional of her - and that's just the 'not checking to see if you were relaxed and comfortable bit'. If she tricked you about the sedative (and it sounds like she may have) then that's very much worse than 'just' being dishonest.

I would think about complaining, definitely. If you don't feel able to or up to it that's completely understandable, but if you could manage it it would help others who come after you with the same doctor, as well as perhaps reassure you that that is NOT the way these things are done, and hopefully give you the confidence to have other procedures in the future.

As I said, the important thing is that you've now had it done :)

Again, really sorry you had to go through that. It's unbelievable. Especially for an anxiety sufferer.

Best wishes :)

[snowgoose]

Hi Jessie:)
glad I didnt offend [paranoia my middle name :blush:]............and agree totally with eight days a week .
I dont think you had any sedation at all .............may be hard to prove of course ...........but the nurses records should show their post sedation observations and the drug register the dose prescribed and reputedly given .
Complain if you can bear to with all the rest of your anxiety on your back . it needs to be reported ............unethical,dangerous and illegal to boot to sign for drugs not actually given but signed for as if they were .
take care and hope to goodness that things pick up for you very soon :hugs:

[jessieblue]

Thanks guys. I am going in for a chat with my practice nurse tomorrow. I will mention to her about the endoscopy experience and see what she thinks of it all. I have a lot of issues I need to raise with my doctor, but dont know where to start, so thought I would get better understanding from the nurse!

Thanks again for continued support. xxx