Jump to content
This site uses cookies. Continued use is acceptance of our Terms of Use and Privacy Policy. More Info... ×
  • Welcome to Celiac.com!

    You have found your celiac tribe! Join us and ask questions in our forum, share your story, and connect with others.




  • Celiac.com Sponsor (A1):



    Celiac.com Sponsor (A1-M):


  • Get Celiac.com Updates:
    Support Our Content
    eNewsletter
    Donate

Bad Experience At My Endoscopy Today :(


Miss-Marie

Recommended Posts

Miss-Marie Rookie

Hey everyone, I had my endoscopy today and I actually feel traumatized now. I said I wanted to be sedated for my endoscopy and so they assured me I would not be aware of what was going on and that I wont remember anything, but I was fully awake and aware of everything that was happening and I remember every detail :'( they gave me the sedative called Midazolam and the throat spray called Lignocaine but for some reason the sedative didn't work on me and I was crying and trying to pull out the scope and the nurses were trying to stop me, I couldn't talk or say stop and I didn't know what to do :( and because I was trying to pull out the scope the nurses said they were trying to press the 'call button' because it was an emergency and before I knew it everyone was holding me down and then they took the camera out. it was such a terrifying experience.

 

After the procedure they said they only managed to take 4 biopsies but they didn't get a clear view and said that the bits they could see looked normal. On the letter it says all sites from the oesophagus to the distal duodenum were examined, and looked normal. I remember them telling me my blood pressure dropped and they were worried but then it went up again so I had to stay a few hours later to make sure I was okay. I was told I would get my next appointment for the results in about 6 weeks time so I will have to wait and see, but what are the chances of them diagnosing me with only 4 biopsies? 

 

I feel so sad, has anybody else had any similar experiences with endoscopies? and will I still have a chance at being diagnosed after what's happened? Thankyou

 

Marie ~


Celiac.com Sponsor (A8):
Celiac.com Sponsor (A8):



Celiac.com Sponsor (A8-M):



1desperateladysaved Proficient

Oh, how sad.   I am sorry you were treated that way.   I hope you will get some answers in spite of everything.

 

 

Diana

dek38 Rookie

I was Sedated during my first Endoscopy, although I can remember it it felt like it was over within 2 minutes, although it took much longer.  Did they put a catherter in your hand??  And inject some fluid?

shadowicewolf Proficient

Have you had this issue with sedation before?

Miss-Marie Rookie

Thank you Diana, I hope I get the results that can diagnose me x

 

Dek - they didnt put anything in my hand but they put a needle in my arm and injected the sedative in there, with sedation I dont usually remember anything :(

 

Shadow - Once i woke up half way through a dental procedure but then fell back asleep fast so it was okay, but other than that they've been okay, i feel scared now that it might happen again :(

Deaminated Marcus Apprentice

  :unsure:  That's terrible Marie, I hope you can put that bad experience behind you soon.

        They should test the patient first to see if they are sedated enough.

momma bee Rookie

That sounds so horrible, I am sorry you had to go through that! Glad they were able to get samples still so can hope that can assist and make it all for something!


Celiac.com Sponsor (A8):
Celiac.com Sponsor (A8):



Celiac.com Sponsor (A8-M):



Miss-Marie Rookie

Marcus - I know I'm still shocked about what happened, they just put the sedative in and I was still talking to them and I was trying to pull the scope out which shows them that I am fully awake but that didn't stop them :( Hopefully I can move on from this but at the moment I keep having flashbacks in my mind of the choking feeling and panicking, I might make a complaint about it tomorrow at the hospital x

 

Momma bee - Thank you, yes hopefully I will still be able to be diagnosed after all this I think I need some good luck now x

shadowicewolf Proficient

Thank you Diana, I hope I get the results that can diagnose me x

 

Dek - they didnt put anything in my hand but they put a needle in my arm and injected the sedative in there, with sedation I dont usually remember anything :(

 

Shadow - Once i woke up half way through a dental procedure but then fell back asleep fast so it was okay, but other than that they've been okay, i feel scared now that it might happen again :(

You should have told the doctors that, even if it was no big deal. The doctors can take that into account and do something different.

 

I'm not trying to place blame or anything. But in this type of case, its better for them to know then not to.

Miss-Marie Rookie

Thanks Shadow I'll try and remember that if I ever have to be sedated again, I didn't think to let them know because it was something I put to the back of my mind, and I assumed everything would go smoothly but it was a very bad experience, I'll definitely mention this experience next time anyway.

ravenwoodglass Mentor

(((((((((((((((((((((((((((((((((((((((((((((((((((((((((((((hugs))))))))))))))))))))))))))))))))))))))))))))))))))))))))))))))))))))

It sounds like there was no anesthesiologist present at your procedure. I had a similiar experience when I had a colonoscopy and endo done by a GI who did the sedation himself. It is an awful experience and I do feel for you. In my case they gave me Versed  and had to stop the procedure after I said many times that he was hurting me (I have a twisted intestine so that complicated things). The doctor at follow up said there was no way I remembered it and then apologized when I told him specific things he had said.

When I had a repeat procedure done by a different doctor he made sure it was done with an anesthesiologist to take care of the sedation part and I had no problems. If you ever have to have an outpatient procedure done again do be sure to tell them about this experience.  Keep the paperwork from your results and note the sedative that was given so they can maybe give you something that will work better for you.

taynichaf Contributor

Ohh my... I'm so sorry that this happened to you :( And you were so worried about this all to begin with! Well atleast it is all over now... I'll pray that you get accurate results <3

NotMollyRingwald Apprentice

((((((Hugs))))))

GottaSki Mentor

Oh Dear Miss-Marie...so sorry to hear this.  I had one kinda bad experience at my first endo due to an allergic reaction to one of the meds....I was trying to itch my head and they thought I was trying to pull the camara tube out -- my celiac doc was able to complete and see what he needed to...but I think I may have hit him.

 

Your day was much worse...but maybe the samples were enough -- wait for the pathology report and DO ask for a written or electronic copy of the procedural report AND the pathology report in about a week -- there is no need to wait six weeks for results!!!!

 

Hang in there and spoil yourself -- rest and maybe a nice bubble bath tonight.

pricklypear1971 Community Regular

I'm sorry, that sounds terrible. A friend went through an entire surgery AWAKE AND AWARE because while he was paralyzed from the anesthesia he was awake and couldn't communicate to say "hey, stop!".

There will be more info after they look at the samples under the microscope.

SasaMinks Rookie

That sound awful - I'm so sorry you went through that :( Just out of curiosity are you red headed? It's been proven that red heads need more sedation and anaesthetic than other people to put them out. I found this out the hard way when my anaesthetic stopped working mid way through a c-section :(  here's some interesting research on it: Open Original Shared Link

 

I really hope you at least get something useful from your results xx

frieze Community Regular

I would wonder if you actually received the med at all.  good luck

Miss-Marie Rookie

Thank you all for the replies and being so kind, I went back to the hospital today and talked to the staff about it and they apologised and said that they will have a meeting with all members of staff so that everyone knows what happened and how I feel, so that they can make sure it doesn't happen again. I've decided not to make a complaint because they were very sorry so I'll just try and recover now. 

 

Raven - I'm not too sure if there was an anaesthesiologist at my endoscopy, they didn't really introduce themselves, they only stopped after I tried pulling the scope out 3 times but in a way I'm glad they carried on otherwise they wouldn't have gotten the biopsies. Okay thankyou I will make sure I remember the name of that sedative so that I wont have the same one next time x

 

Tay - Thankyou ahh yes I was so nervous but I was trying my best to be as calm as I could, maybe my nervousness actually affected the medicine lol? Thank you I hope you get the results that you need too x

 

Notmollyringwald - Thank you :) (hugs back)

 

Gottaski - Sorry to hear you had a bad experience at your endoscopy too. Thank you I will ask for the results in about a weeks time then, maybe they might have the results at my local doctors surgery they normally do, lol good advice thanks and  I will do :) x

 

Pricklypear - My great auntie had a similar experience where she woke up in an endoscopy and couldn't move or talk and was terrified, and I kept telling myself it wouldn't happen to me but now it has, at least I could still move and talk though. x

 

Sasaminks - Thank you, nope I have brown hair but that's so interesting, I didn't know things like hair colour could have an effect on sedation. Oh that sounds horrible I'm sorry you had to go through that, its scary to think that anaesthetic can just not work sometimes, I hope it never happens again. Thanks again xx

 

Frieze - That's interesting too because then I looked at my arm when I got home I saw that the mark from the needle wasn't actually on the vein it was near it, I don't know if that matters but it made me wonder if they put the medicine in right or not x

frieze Community Regular

Thank you all for the replies and being so kind, I went back to the hospital today and talked to the staff about it and they apologised and said that they will have a meeting with all members of staff so that everyone knows what happened and how I feel, so that they can make sure it doesn't happen again. I've decided not to make a complaint because they were very sorry so I'll just try and recover now. 

 

Raven - I'm not too sure if there was an anaesthesiologist at my endoscopy, they didn't really introduce themselves, they only stopped after I tried pulling the scope out 3 times but in a way I'm glad they carried on otherwise they wouldn't have gotten the biopsies. Okay thankyou I will make sure I remember the name of that sedative so that I wont have the same one next time x

 

Tay - Thankyou ahh yes I was so nervous but I was trying my best to be as calm as I could, maybe my nervousness actually affected the medicine lol? Thank you I hope you get the results that you need too x

 

Notmollyringwald - Thank you :) (hugs back)

 

Gottaski - Sorry to hear you had a bad experience at your endoscopy too. Thank you I will ask for the results in about a weeks time then, maybe they might have the results at my local doctors surgery they normally do, lol good advice thanks and  I will do :) x

 

Pricklypear - My great auntie had a similar experience where she woke up in an endoscopy and couldn't move or talk and was terrified, and I kept telling myself it wouldn't happen to me but now it has, at least I could still move and talk though. x

 

Sasaminks - Thank you, nope I have brown hair but that's so interesting, I didn't know things like hair colour could have an effect on sedation. Oh that sounds horrible I'm sorry you had to go through that, its scary to think that anaesthetic can just not work sometimes, I hope it never happens again. Thanks again xx

 

Frieze - That's interesting too because then I looked at my arm when I got home I saw that the mark from the needle wasn't actually on the vein it was near it, I don't know if that matters but it made me wonder if they put the medicine in right or not x

wouldn't worry about the positioning of the entry point for the needle, if they weren't in the vein you would def. know!  No, my thought was someone took what was supposed to be used for you, for their own use.  by the way, Versed is the brand name for what you had.

good luck.

t

ravenwoodglass Mentor

 

Raven - I'm not too sure if there was an anaesthesiologist at my endoscopy, they didn't really introduce themselves, they only stopped after I tried pulling the scope out 3 times but in a way I'm glad they carried on otherwise they wouldn't have gotten the biopsies. Okay thankyou I will make sure I remember the name of that sedative so that I wont have the same one next time x

 

 

Usually an anesthsiaologist will speak with you before the procedure. The first indication that you were not adaquately sedated when have prompted them to take care of the problem. If one was present IMHO you would only have tried to pull the tube out one time and no one would have been forcefully holding you down.

NotMollyRingwald Apprentice

That sound awful - I'm so sorry you went through that :( Just out of curiosity are you red headed? It's been proven that red heads need more sedation and anaesthetic than other people to put them out. I found this out the hard way when my anaesthetic stopped working mid way through a c-section :( here's some interesting research on it: Open Original Shared Link

I really hope you at least get something useful from your results xx

This has been my experience also. I always require more Novocain at the dentist, and needed extra anesthesia when I had my tonsils out, etc. I didn't realize this was a red head thing!

carisima Newbie

Hey everyone, I had my endoscopy today and I actually feel traumatized now. I said I wanted to be sedated for my endoscopy and so they assured me I would not be aware of what was going on and that I wont remember anything, but I was fully awake and aware of everything that was happening and I remember every detail :'( they gave me the sedative called Midazolam and the throat spray called Lignocaine but for some reason the sedative didn't work on me and I was crying and trying to pull out the scope and the nurses were trying to stop me, I couldn't talk or say stop and I didn't know what to do :( and because I was trying to pull out the scope the nurses said they were trying to press the 'call button' because it was an emergency and before I knew it everyone was holding me down and then they took the camera out. it was such a terrifying experience.

 

After the procedure they said they only managed to take 4 biopsies but they didn't get a clear view and said that the bits they could see looked normal. On the letter it says all sites from the oesophagus to the distal duodenum were examined, and looked normal. I remember them telling me my blood pressure dropped and they were worried but then it went up again so I had to stay a few hours later to make sure I was okay. I was told I would get my next appointment for the results in about 6 weeks time so I will have to wait and see, but what are the chances of them diagnosing me with only 4 biopsies? 

 

I feel so sad, has anybody else had any similar experiences with endoscopies? and will I still have a chance at being diagnosed after what's happened? Thankyou

 

Marie ~

 

I have had a bad experience with an endoscopy too, Miss Marie. I was barely sedated, and aware of everything, when they pushed an the endoscope down my throat and into my stomach. It really hurt, and was scary. Luckily, though, I went out within thirty seconds, it was not nearly as terrifying as yours was, but still memorable for me. I'm really sorry you had to go through that *hugs*

whatsit Newbie

Marie, how awful that this happened to you, and I think you should indeed file a complaint about it, so that they might not do it to someone else. It's incomprehensible that they didn't care enough to stop what they were doing and relieve your pain.

Miss-Marie Rookie

Hi frieze thanks for the info but I'm pretty sure I saw them putting the medicine in my arm so its not been used for anyone else lol :)

 

Raven there was a lady who asked me questions like when was the last time I ate anything etc but they didn't say who they were so I'm not too sure, but it doesn't sound like there was one now. Is there supposed to be an anaesthesiologist at every endoscopy?

 

Carisima sorry to hear you had a bad endoscopy too, I wish the endoscopy doctors would use better medicines and make sure the patients are properly sedated first.

 

Whatsit thank you but I've decided not to make a complaint because they have apologised for it and they said they were going to have a meeting to tell all the staff there so hopefully that helps to ensure it doesn't happen again to anyone else. they are really nice staff there and I'm sure they didn't intentionally try to do the wrong things etc.

carisima Newbie

Hi frieze thanks for the info but I'm pretty sure I saw them putting the medicine in my arm so its not been used for anyone else lol :)

 

Raven there was a lady who asked me questions like when was the last time I ate anything etc but they didn't say who they were so I'm not too sure, but it doesn't sound like there was one now. Is there supposed to be an anaesthesiologist at every endoscopy?

 

Carisima sorry to hear you had a bad endoscopy too, I wish the endoscopy doctors would use better medicines and make sure the patients are properly sedated first.

 

Whatsit thank you but I've decided not to make a complaint because they have apologised for it and they said they were going to have a meeting to tell all the staff there so hopefully that helps to ensure it doesn't happen again to anyone else. they are really nice staff there and I'm sure they didn't intentionally try to do the wrong things etc.

 

I think in my case, it was because I reacted so violently to my first endoscopy/ colonscopy (ended up throwing up after the anasthesia, and almost always do). I made them aware that I was allergic to Demoral (?) and ended up getting a lower dosage (even though I still vomited after my endoscopy). I wasn't tested for celiac disease either time, and didn't know what it was, so I might be going another one real soon :(.

 

But, when I had surgery for my breast cysts I told them that I was awake during a prior procedure, and they adjusted the levels to make sure I was asleep. I will be doing that in the future (if I'm able to), to make them aware of my prior experience being awake, and to ensure I'm totally out while undergoing the procedure. I'm glad they're also taking proactive steps to make sure that this doesn't happen again to another patient.

Archived

This topic is now archived and is closed to further replies.

  • Get Celiac.com Updates:
    Support Celiac.com:
    Donate

  • Celiac.com Sponsor (A17):
    Celiac.com Sponsor (A17):





    Celiac.com Sponsors (A17-M):




  • Recent Activity

    1. - Scott Adams replied to KDeL's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      1

      diagnostic testing variance

    2. - KDeL posted a topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      1

      diagnostic testing variance

    3. - Peggy M replied to louissthephin's topic in Gluten-Free Foods, Products, Shopping & Medications
      6

      Does Kroger Offer Affordable Gluten-Free Options?

    4. - Scott Adams replied to Sunshine4's topic in Related Issues & Disorders
      4

      Neurologic symptoms - Muscle Twitching and Hand Tremors

    5. - trents replied to MI-Hoosier's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      5

      Test uncertainty


  • Celiac.com Sponsor (A19):



  • Member Statistics

    • Total Members
      128,277
    • Most Online (within 30 mins)
      7,748

    Cooper1234
    Newest Member
    Cooper1234
    Joined

  • Celiac.com Sponsor (A20):


  • Forum Statistics

    • Total Topics
      121.1k
    • Total Posts
      70.8k

  • Celiac.com Sponsor (A22):





  • Celiac.com Sponsor (A21):



  • Upcoming Events

  • Posts

    • Scott Adams
      I’m so sorry you’re going through this—it sounds like you’ve been on a really challenging journey with your health. Your symptoms (stomach pains, bloating, low iron, joint pain, brain fog, etc.) do sound like they could be related to gluten sensitivity or another condition like non-celiac gluten sensitivity (NCGS). It’s interesting that your bloodwork hasn’t shown celiac markers, but the lymphocytosis in your duodenum could still point to some kind of immune response or irritation, even if it’s not classic celiac disease. The fact that your symptoms improved when you went gluten-free but returned when you reintroduced gluten (especially with the donut incident) is a pretty strong clue that gluten might be a trigger for you. It’s also worth noting that symptoms can be inconsistent, especially if your body is still healing or if there are other factors at play, like stress, cross-contamination, or other food intolerances. Do you have more info about your blood test results? Did they do a total IGA test as well? 
    • KDeL
      For years, I have dealt with various gluten related symptoms like stomach pains, bloating, IBS-C "ish" digestive issues, low iron, low Vit D, joint pains, brain fog, and more. I finally got a double scope and stomach looks clear, but I have some lymphocytosis of the duodenum. I am wondering if this sounds familiar to anyone, where I have not shown celiac red flags in bloodwork IGA tests. WIll be following up soon with GI Dr, but so far, my symptoms are intermittent. I go back and forth with gluten-free diet (especially this past year.... did two tests where the stomach pains I had went away without gluten in diet. HOWEVER, I added it back a third time and I didn't get the pains)   Anyway, I am so confused and scared to eat anything now because I recently had a few bites of a yeasty donut and I immediately got so sick. Any thoughts??
    • Peggy M
      Kroeger has quite a few Gluten free items.  Right now they are redoing my Kroeger store and are adding everything into the regular sections.  Since this was done some new ones have been added.  Publix and Ingles also have great selections. I actually shop Walmart and Food City to since prices on some items vary from store to store.
    • Scott Adams
      Sorry but I don't have specific recommendations for doctors, however, starting out with good multivitamins/minerals would make sense. You may want to get your doctor to screen you for where you different levels are now to help identify any that are low, but since you're newly diagnosed within the past year, supplementation is usually essential for most celiacs.
    • trents
      Yes, I can imagine. My celiac journey started with a rejection of a blood donation by the Red Cross when I was 37 because of elevated liver enzymes. I wasn't a drinker and my family doctor checked me for hepatitis and I was not overweight. No answers. I thought no more about it until six years later when I landed a job in a healthcare setting where I got annual CMP screenings as part of my benefits. The liver enzymes were continually elevated and creeping up every year, though they were never super high. My primary care doc had no clue. I got really worried as your liver is pretty important. I finally made an appointment with a GI doc myself and the first thing he did was test me for celiac disease. I was positive. That was in about 1996. After going on a gluten-free diet for three months the liver enzymes were back in normal range. Another lab that had gotten out of whack that has not returned to normal is albumin/total protein which are always a little on the low side. I don't know what that's about, if it's related to the liver or something else like leaky gut syndrome. But my doctors don't seem to be worried about it. One thing to realize is that celiac disease can onset at any stage of life. There is a genetic component but there is also an epigenetic component. That is, the genetic component is not deterministic. It only provides the potential. There needs also to be some health or environmental stressor to activate the latent gene potential. About 40% of the population have the genetic potential to develop celiac disease but only about 1% actually do.
×
×
  • Create New...