Jump to content
  • 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:
    Join eNewsletter
    Donate

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





    Celiac.com Sponsors (A17-M):




  • Recent Activity

    1. - Ginger38 replied to Ginger38's topic in Related Issues & Disorders
      4

      Shingles - Could It Be Related to Gluten/ Celiac

    2. - Mari replied to Jmartes71's topic in Related Issues & Disorders
      18

      My only proof

    3. - Ginger38 replied to Xravith's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      2

      Challenges eating gluten before biopsy

    4. - Scott Adams replied to Xravith's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      2

      Challenges eating gluten before biopsy

    5. - Scott Adams replied to emzie's topic in Related Issues & Disorders
      2

      Stomach hurts with movement


  • Celiac.com Sponsor (A19):



  • Member Statistics

    • Total Members
      132,472
    • Most Online (within 30 mins)
      7,748

    731049
    Newest Member
    731049
    Joined

  • Celiac.com Sponsor (A20):



  • Celiac.com Sponsor (A22):




  • Forum Statistics

    • Total Topics
      121.5k
    • Total Posts
      1m

  • Celiac.com Sponsor (A21):


  • Upcoming Events

  • Posts

    • Ginger38
      It has been the most terrible illness ever! Going on 3 weeks now… I had chicken pox as a kid… crazy how much havoc this dormant virus has caused after being reactivated! No idea what even caused it to fire back up. I’m scared this pain and sensitivity is just never going to improve or go away 
    • Mari
      OKJmartes. Skin and eyes. Also anxiety and frustration. I have read that Celiacs have more skin problems than people who do not have Celiacs. I take increased levels of Vit. D3, very high levels of B12 and an eating part of an avocado every day. KnittyKitty and others here can add what they take for skin health. A Dermatologist might identify the type of skin condition. By eyes you may mean eyesight problems not just irritated, red eyes. It is not very difficult to get a diagnosis of which eye condition is affecting your vision but much more difficult to find an effective remedy. The ophthalmologists I have seen have been only a little helpful. There seems to have been some advances in eye treatments that most of them are completely ignorant of or just won't add to their treatment plans.  Forcertain you may as well buy some remedy from a facebook ad but that is obviously risky and may actually damafe your eyes. However it is known that certain supplements , taken at the effectivelevels do help with eyesight. Two of them are Luten and zanthamin (spelling?)and certain anti-oxidants such as bilberry..    Hope this helps.
    • Ginger38
      I refused to do the gluten challenge for a long time because I knew how sick I would be: I have always had and still have positive antibodies and have so many symptoms my  GI was 💯 sure I would have a positive biopsy. I didn’t want to make myself sick to get a negative biopsy and be more confused by all this.  He couldn’t guarantee me a negative biopsy meant no celiac bc there may not be damage yet or it’s possible to miss biopsies where there’s damage but he was so sure and convinced me I needed that biopsy I went back on gluten. It was a terrible experience! I took pictures of the bloating and swelling and weight gain during the challenge. I gained 9 pounds, looked pregnant, was in pain , couldn’t work or function without long naps and the brain fog was debilitating. And in the end he didn’t get a positive biopsy… so I wish I had never wasted my time or health going through it. I haven’t been truly straightened  out since and I am currently battling a shingles infection at 43 and I can’t help but wonder if the stress I put my body under to try and get an official diagnosis has caused all this. Best of luck to you - whatever you decide. It’s not a fun thing to go through and I still don’t have the answers I was looking for 
    • Scott Adams
      It's completely understandable to struggle with the gluten challenge, especially when it impacts your health and studies so significantly. Your experience of feeling dramatically better without gluten is a powerful clue, whether it points to celiac disease or non-celiac gluten sensitivity. It's very wise of you and your doctor to pause the challenge until your holidays, prioritizing your immediate well-being and exams. To answer your questions, yes, it is possible for blood tests to be negative initially and become positive later as the disease progresses, which is why the biopsy remains the gold standard. Many, many people find the gluten challenge incredibly difficult due to the return of debilitating symptoms, so you are certainly not alone in that struggle. Wishing you the best for your exams and for obtaining clearer answers when you're able to proceed.
    • Scott Adams
      It's smart that you're seeing the gastroenterologist tomorrow. While it's possible this is a severe and persistent inflammatory reaction to gluten, the fact that the pain is movement-dependent and localized with tenderness is important for your specialist to hear. It could indeed be significant inflammation, but it's also worth ruling out other overlapping issues that can affect those with celiac disease. Is it possible you got some gluten in your diet somehow? This could be a possible trigger. Hopefully, tomorrow's appointment will provide clearer answers and a path to relief so you can get back to your lectures and enjoy your weekend. Wishing you all the best for the consultation.
×
×
  • Create New...

Important Information

NOTICE: This site places This site places cookies on your device (Cookie settings). on your device. Continued use is acceptance of our Terms of Use, and Privacy Policy.