Upper Endoscopy Procedure Problems

Sara East · Post by **Sara East** » Fri Aug 29, 2008 12:51 pm

I had Upper Endoscopy done for the first time yesterday and it went horribly. I'll explain in a minute but I wanted to know what others here have experienced.

I had no idea what the procedure would be like except what I could find online...all I knew is the doc was going to put a scope down my throat into my small intestine and take biopsies (she was checking for Celiac's). When the nurse explained I'd be sedated with Versed and Fentanyl I about had a heart attack. I explained that I have a high tolerance to those drugs and during my last colonoscopy woke up 15 minutes after having 8mg of Versed and 150mcg of Fentanyl. They had to stop the procedure since I was screaming and crying in pain and not the least sedated. The doctors said it was as high of dose as they could give me and from now on I should have procedures done under anesthesia since conscience sedation doesn't work for me. The nurse said I should've told my doc and I explained that I did tell her that plus she has all of my records from all of my procedures. The nurse just shrugged her shoulders, told me it was a different day, and then said the procedure was fast and don't worry about it.

I was taken back to the room and given the meds and sure enough I was wide awake with no relaxed feelings. They sprayed and sprayed my throat to try and get rid of my gag reflex but the spray wasn't working either. Finally they told me they will have to proceed anyway and not to worry, she said it was very fast and wouldn't hurt a bit. Like I said I had no idea what to expect and believed them, they were medical professionals after all.

The nurse strapped a plastic ring to my head that went in my mouth and protected my teeth and the doc began to put the scope in. Immediately I felt a burning, scraping pain going down my throat, like a big round peg with flat ends being shoved down my throat. I began retching and vomiting around the scope and felt like I was drowning. They kept yelling at me to hold still and I tried but I couldn't help my hands coming up and pushing at the scope, it was instinct. They took my hands and held them to the bed. I tried not to cry but it REALLY hurt and I had no control over what was being done, I couldn't talk and I couldn't even move my arms.

I could feel the scope going farther and farther down and my stomach was so contracted from retching the muscles wouldn't relax. So much fluid was coming out around the scope as I vomited they had to put towels under my head. Finally, after what seemed like hours, she took the damn biopsies and got the scope out of there. After it was out the doc hurried out of the room and I didn't see her again. My throat is still wicked sore a day later and after the procedure I couldn't quit crying...I felt like I had been tortured. They gave me some ice chips and were surprised I could swallow, they said most people can't swallow for a while because of the spray and I told them the spray didn't work, I could feel everything. No one ever apologized, they just threw me my bag and told me to get dressed.

My husband had been trying to call and find out when I was done because they said my appointment was at 1130 and it was 200. They told him it would take maybe an hour and a half and we had to be at the school to pick my daughter up at 300 and we were an hour and a half away! My appointment ended up being an hour and 45 minutes late and no one would tell us that, they kept saying it would just be a few more minutes. If we had known we would've done things differently, my daughter ended up staying in the principals office for over an hour reading books waiting for us to pick her up! I can't believe how horribly we were treated! They knew my history but decided to continue anyway, I didn't know what to expect so I believed them when they said it was painless. I get so mad at doctors and nurses now, no matter where I go I get treated like crap! I'm paying them so I should have great customer service, no other business could get away with treating their customers like that. The drugs that are available were invented for a reason...to stop human suffering. If we have these drugs and the patient has no problems with them, then why the hell can't they give them? They were even giving me grief when I asked for something to stop the vomiting! I went home and puked last night, all night. My gut was swollen with the air they put in and I had horrible abdominal pain.

Has anyone else had an experience like this? Is this normally how it's done?

Camryn'sMommy · Post by **Camryn'sMommy** » Fri Aug 29, 2008 2:03 pm

All I can say is OMG!!! That is absolutely horrible. Camryn has a really high tolerance to those drugs too. They had to give her 2 extra doses after the initial dose (which was supposed to work by itself)....and she still woke up during the colonoscopy. They assured me she wouldn't remember it....now I'm not so sure.

From personal experience (I've had 2 endoscopies)....that is TOTALLY not how they are supposed to go. I've never heard of anyone being awake during one. Both times I was completely out (via Twilight) and don't remember anything. My throat hurt the first time, but nothing major. No vomiting or anything.

I'm so sorry you had such a bad experience. Did they give any indication if they found anything? I guess not since the Dr. ran out of the room. What a horrible bedside manor!

Sara East · Post by **Sara East** » Fri Aug 29, 2008 2:36 pm

Awww, what a cute picture! Glad you got the avatar thing working, I had to have Tex fix mine too :) I'm so sorry Camryn woke up during the colonoscopy! I really hate discussing it because I don't want you to be upset but I totally remember everything...I could even feel them taking the biopsies while they were pulling the scope out. I guess they wanted to grab and go since they couldn't go further. They were so rude to me, when they wheeled me back to the recovery room they told me to get dressed and go sit on a chair until my husband came. When he got there they told me to go home and take something in my medicine cabinet. Meanwhile the lady in the next bed had a nurse ask if she wanted anything to drink, help her get her clothes on, and help her into a wheel chair and push out to her husband. I was sitting in pain crying and everyone seemed mad at me. That was the last colonoscopy I had and this endoscopy wasn't much different. I'm so at the point of being done but I keep thinking just one more thing and we might find out why I have this. I've only got 2 more meds left to try and if they don't work I'm out of luck. The doctor told the nurse to tell me that everything looked good but she has to wait for the biopsies to know if I have Celiac's. The nurse said I could talk to the doctor myself but I would have to wait 45 minutes. Like I mentioned I was all ready going to be over an hour late picking my daughter up at school. One thing you can think about is instead of getting another colonoscopy done, you can have Camryn's slides from the biopsies sent to another doctor and lab to get a second opinion and diagnosis. That's what I had done when I started seeing the new doctor. She was skeptical of my diagnosis even though I two colonoscopies done with biopsies, two years apart, and by two different labs and docs. I had my slides sent to her and her lab rather than going through another one. She was surprised to find I did have lymphocitic colitis after examining them. Maybe you can do something like that and avoid more procedures? I REALLY hope they can find something to help you guys!

barbaranoela · Post by **barbaranoela** » Fri Aug 29, 2008 5:15 pm

Sara----boy can I relate to that horror--but that was with my first GI---who was a total fool--
He ran some stuff into my arm---which didnt really do a thing--and then he kept saying relax---I cant give U anymore-

The thing was---he put something in my mouth for me to bite down (guess to keep mouth open) then he started to shove this tube down my throat --which just WASNT going--and he kept yelling RELAX---finally on the third try he just shoved it down and I must have squeezed that nurses hand till the blood stop flowing---and to be honest I dont think she was a NURSE cus she didnt know from *beans* what to do

This was to check a hiatal hernia---I stayed with this GI cus I wasnt in the know of searching and etc.And I went cus I was *D* all the day long--
Finally I went to a GI in--NYC--spent several years with him---and he did an endoscopy--which was amazing--sedated me before I got into the room---then hooked me up to a drip and he went down and I didnt feel a thing---I was semi-awake and even watched the procedure--appears that my vocal cords have been bruised--from surgery that I had a few months earlier---and thats why @ times my v oice is very raspy--

I wasted many years with the first GI---we all have some stories to tell here--dont we~~~~

Hope U R felling better--
Luve Barbara

Post by **tex** » Fri Aug 29, 2008 6:08 pm

Sara,

Wow! I'm so sorry that they treated you that way. Sometimes a post will make my day, and sometimes one will literally ruin my day - this one was in the latter category. If I had read the description you wrote at some unfamiliar internet site, I would have chalked it up to hype, but reading it here, eliminates any doubt about it's validity. You know what? I've doctored a lot of livestock over the years, and helped doctor a lot more, and quite frankly, I've never seen anyone abuse an animal that way, (though I'm sure it happens), so it never occurred to me that any doctor would treat a human patient that way.

Incredible! That would make a good scene in a horror movie, wouldn't it. I've watched my own colonoscopy exam on the monitor, and still vividly remember virtually every detail of the exam, (because the stuff they gave me didn't work on me, either), even though that was 8 years ago, and since then, I've had a broken arm set, with no pain deadening, (because the stuff they gave me didn't have any effect, even after they gave me a double dose), but in both cases, the doctor asked me what I wanted him to do, and I told him to go ahead, but nobody tied my hands, and everything went smoothly, otherwise. Several years ago, when I had emergency abdominal surgery, and a nurse was supposed to insert a tube through my nose, and into my stomach, to try to drain my stomach contents, she kept gouging a bronchial tube instead, because she was trying to push it into one of my lungs. I finally convinced her to give it up, and another nurse, (who obviously knew what she was doing), slipped it into place easily. For several days, after the surgery, the damage the first nurse had done to my bronchial tube bothered me a lot more than the eight inch incision into my belly. The thought of legal recourse, though, never crossed my mind, in any of those situations, because I really didn't feel abused in either case. The nurse, for example, was probably new, and just inexperienced. Your case is completely different.

I'm probably way out of line here, but if I were in your shoes, I would calmly go through the followup visit/s to see what she found, and then after she finishes filing her reports, I would request a copy of the endoscopy report, (from the records department, not from the doctor), along with your previous records, showing that those drugs were known to be ineffective on you, and I would take those records to an attorney who specializes in medical malpractice cases, and see if you have a case - I'm betting you do. There's no excuse for that kind of abusive treatment.

Tex

Polly · Post by **Polly** » Sat Aug 30, 2008 7:20 am

Oh Sara! That is barbaric! How awful. I got chills reading your post.

I would certainly write this up and meet with the hospital administration. Also report this incident to your state board of physician quality assurance (or whatever it may be called). A letter to the editor of your local paper might help too. There is absolutely no reason for something like this to happen.

I hope you at least get some helpful info from this test, but the fact is that you may not. It is not at all unusual for folks with MC and even severe gluten sensitivity to have a perfectly normal endoscopy. The endoscopy is more likely to be positive in full-blown celiac disease, which we here rarely have. This is explained in Dr. Fine's article on his website (www.finerhealth.com) titled "Early Diagnosis of Gluten Sensitivity - Before the Villi are Gone". This means that even if your endoscopy is normal (normal-looking villi) you can still have significant gluten sensitivity.

Isn't it sad, really, that most GI docs don't know this fact?

Love,

Polly

Polly · Post by **Polly** » Sat Aug 30, 2008 8:02 am

P.S.

Sara, to find the article, go to:

www.finerhealth.com

and then click on "Personal Statement of Dr. K. Fine" and finally "New Essay" in the column on the left

Polly

starfire · Post by **starfire** » Sat Aug 30, 2008 7:15 pm

Sarah, I am horrified at what they have put you through!!! Twice, no less!!

I am another that the type of sedation used on you didn't work so well. It was my first colonoscopy and I felt too much of it to ever go back to that doctor. When my GP told me I had to have another (after MC started) I refused to go back to same one and that time it went fine. I was put completely under and didn't remember a thing. They did an endoscopy at the same time. No problems with either one.

I surely hope you can find someone/someplace who can do the same for you. What you have been through is unforgivable.

Love, Shirley

JJ · Post by JJ » Mon Sep 01, 2008 10:17 am

Oh Sara! That is a very scary story! Hugs kiddo...JJ

sunny · Post by **sunny** » Mon Sep 01, 2008 7:59 pm

Sarah, i have been out of the loop for a while, but I am just appalled at the medical treatment (I use that word loosely!) that you endured. i agree with Tex and Polly; this is definitely not OK and it would be wise to pursue their suggestions.
When I was much younger, a dentist refused me anesthetic for the second half of a root canal on 2 teeth, saying it would "only take a minute" and not hurt "that much." the nurse and attendant tried to intervene on my behalf, but he didn't listen. I was crying and squeezing her hand too. I was just relieved it was over and never did anything. A friend years later said that no jury any where would side with a dentist who abused his patients. I am older now, and hopefully wiser, and all these people need to be recognized and held accountable for their part in such barbarism. The doctor had the written word(your records) and your spoken words and then your reaction. I am so mad my cheeks are red!!!! Please don't "forget about it" and let them get away with this!!!
here comes a big big hug from Oregon!!! :bigbighug:

Sunny

JLH · Post by **JLH** » Mon Sep 01, 2008 9:06 pm

I can't begin to tell you how sick and angry I am about your HORRIBLE experience. It's really outrageous and I hope you follow Tex's advice and see an attorney. No one should have to go through what you went through. I'm so sorry you had to endure that incompetence.

Love,

MaggieRedwings · Post by **MaggieRedwings** » Tue Sep 02, 2008 5:56 am

Morning Sara,

I too am appalled and horrified at what you had to endure and sure hope that you take this up the ladder with the hospital administration. The more I read of some of these "callous" procedures the less I would ever endure. Had a GI appointment this week and flatly refused the need for any more colonoscopies. Told him one was enough and he looked at me like I had 2 heads. Thought he and I were on the same page but found out otherwise. I have had it with the medical world too.

Take care and love, Maggie

Gloria · Post by **Gloria** » Tue Sep 02, 2008 9:12 am

Sara,
I agree with what everyone has written. Your experience was horrible and you should report it to someone. No one should have to go through that kind of torture.

Gloria