Colonoscopy Horror Story

[parakeets]

6 years ago I had a routine colonoscopy and it was the most upsetting medical procedure of my life.  Even though it was done in a hospital under Demerol and Versed, I had excruciating pain, was thrashing about, totally awake, and in such agony that I was begging and screaming at the doctor to stop.  Instead, he had me restrained in a Tyvek restraint jacket on the surgical table and I was held down while he proceded with the colonoscopy.  It was traumatic beyond belief.  Afterwards, he admitted to nothing and would only say  my colonoscopy was "totally routine."  I had violent flashbacks for weeks afterwards, and even had to get a bite plate due to damage I did to my jaw biting in agony from pain during the procedure.  Though I tried, I got nohwere when I tried to go against him legally.  I determined I would never have a colonoscopy again.  I was severely traumatized by my doctor's actions during the procedure, and even more afterwards, when he denied what I said had happened  (even though I had physical evidence).  I was told that under these drugs "people imagine things."  That re-traumatized me even more.  

Now it turns out I have some rectal bleeding from hemorrhoids.  Because of the bleeding, my primary care physician wants me to have another colonoscopy (the one 6 years ago showed no polpys or anything, though the previous doctor did admit my colon had many turns and was longer than the endoscope tube he used).  Even after some sessions with a therapist, I still cannot submit to a colonoscopy again.  Does anyone have any suggestions or experiences that will help?  I just can't do it.

[Jaybay]

First, don't go back to that same doctor!  Ultimately, it's your own decision.  Doesn't make it any easier, I know.  Find a new doc and tell him your fears and exactly why you're so worried.  I had a similar first experience and swore up and down I'd NEVER go through that again.  Turns out I've had umpteen gazillion scopes at the hands of a wonderful doc who has not hurt me once.  

It would be an unusual request, but I'm wondering if you could request that a family member be present to witness the procedure - even if just through a doorway.  Would that give you enough confidence to try it knowing that someone else could put a stop to it if things go south again?  Maybe talk to the Patient Advocate's office of the facility and see if one of them could stand in as witness and protector if need be?  I dunno, just throwing some ideas out there.  Maybe someone else will come up with something better.

[Emmie072006]

Ask them to put you totally out in the operating room with an anesthesiologist.  No sedation-totally under.  I think it's called MAC sedation or something but it can be done.

[April2]

OMG! You poor thing! I couldn't believe that any doctor could be so cruel. How horrible. I hope you really do go after this dirtbag so that he doesn't hurt anyone else.
I want to tell you that it doesn't have to be that way at all! I had to get a colonoscopy too about three years ago. I almost cancelled a few times and even called the doctor. He told me he understood my anxiety and explained what all would happen to try and put my mind at ease. I was actually more worried about the modesty part than pain. He was very sensitive to that. The day of the colonoscopy, they started me on the pain meds, then took me back to the room. They piled blankets on me till I felt like I was in a cacoon and put a pillow under my head and kept asking if I was ok. They dimmed the light till it was almost dark, which made me feel better about the modesty part! Their was a nurse at my head controlling how much meds I would need while the doctor was behind me doing the procedure. I asked them upfront to only give me enough meds to take the edge off because I was interested in watching the screen and I wanted to stay awake. They told me that they would do that but as soon as I needed more to let them know and they'd give it to me immediately. It started out fine, then I started feeling the pressure and then pain and I immediately said to stop! He stopped right away and motioned to the nurse to increase the meds. She asked if I wanted it increased and I said yes! The next thing I knew I was waking up and they were done and moving me. My doctor was very intuned to my needs and was very gentle and caring. They should ALL be like that! Please keep looking until you find someone you are comfortable with. Talk to them before the procedure and tell them about your past experiences. They should be sympathetic and reassure you. If they don't, keep looking. It really does not have to be like that! I can't believe anyone could be that barbaric! Maybe this doctor needs to be strapped down and shown how it feels, what he did! I really do hope you take this barbarian to court or at least report him. Please, please rest assured, it is not supposed to be like that! You deserve better. I wish you the best and I pray that you can heal from this trauma you've experienced. God bless.

[Susana_Forest]

I can believe a doctor can be so cruel.   The doctor gets paid for the procedure and your complaints get lip service at best.   I learned only to trust doctors to a point but always remain a CYNIC.

[parakeets]

Thanks so much for your reply.  I was so glad to hear that you had subsequent colonoscopies that were not a problem.  Good suggestion about the advocate and I had been thinking of hiring an advocate to be in the colonoscopy with me but I'd want to hire someone not from the hospital, someone outside I could trust.  I'm afraid the same thing would happen again (I might have a difficult colon) and the doctor would convince the advocate to let him continue scoping me.  It is odd, but I felt as if I had been violated, almost sexually, by his continuing the agonizing procedure when I told him to stop.  He acted as if I weren't there talking to him, and was just a piece of meat on the table.  What if the new doctor convinced the advocate I was out of it and not feeling whatever I was saying I felt?  So many medical people afterwards alluded to "how the imagination plays tricks" and how the drugs make us think things.  No, it happened and happens to a small percentage of patients.  It's just that certain doctors procede with the colonoscopy and finish it.  Apparently it is permissible to put a patient in restraints if they are thrashing during a colonoscopy procedure with an endoscope in the colon because it prevents possible bowel perforation.  So it could happen again.  I just can't go through with it.

[ggreg]

Jaybay's advice of having someone with you is a great idea.  Or you can simply forget about having another colonoscopy.  There are plenty of other ways of seeing if someone has a problem in their bowel, like cat scans and ultrasound, which are noninasive.  Or you can use various over-the-counter hemmorhoid salves to treat those rough places and change your diet for easier bowel movements, and if the bleeding stops, you can perhaps let this thing go.  Someone else posted here about a nightmare procedure like yours, it's under something like "ethics."

[parakeets]

Thanks so much for your post.  You caught the emotions of what I went through.  I'm surprised that even 6 years later I still feel so bad that I can't schedule a colonoscopy and am having traumatic memories.  My own doctor said that if I had no symptoms, 10 years was enough before my next colonoscopy and they might have virtual colonoscopy by then.  Well, unfortunately I had some symptoms and virtual colonoscopy isn't here yet. Funny, I fantasized the exact same thing that you did --that the doctor should be strapped down and have it done to him.  I reported him to the head of the small HMO I'm in.  Met with the director face-to-face.  Oddly, they seemed to acknowledge, at least indirectly and by hints, that things like this happen to some unfortunate patients, but no one would say it in writing or exact words--doctors cover for each other.  Even my dentist, who had seen me the week before the colonoscopy and then 2 days later when my bite was completely destroyed and I couldn't chew (from biting in agony during the procedure)--wouldn't say that my bite was damaged in the colonoscopy.  He just said "We don't know what goes on in these procedures and the doctors do what they have to do."  Yes, barbaric.  That's the perfect word.  Thank heavens I have my loving family and friends who didn't doubt me for a second.  They knew what I had been through and supported me through my weeks of recovery from the trauma.  Day by day I got better, but I am not better enough to go through another colonoscopy.  I can't even imagine having one with another doctor or another hospital.  I just can't have one.

[parakeets]

Thanks.  I hadn't thought of the possibility of addressing the problem without a colonoscopy and your post has some great ideas.  I saw the post you referred to about the woman here who had the same experience as I did (misskitty, I think).  It was so validating to hear that it happened to her almost the same exact way it happened to me.  Her post was incredibly helpful to me.  I never thought to get on the web when I had my bad experience in 2001.  Shows how much the web has changed our lives in 6 years.  Now it would be the first place I went to find out how to deal with it.  I might have even taken my legal action further.  It was more an ethics violation, which are harder to prove than malpractice, since it was apparently correct surgical procedure to restrain me when I was thrashing around in agony.  But I just can't have another colonoscopy.  My sister had a non-cancerous polyp removed in her colonoscopy and wants me to have one because she is such a supporter of them, but I can't.

[Mozartcowgirl]

my first colonsocopy was a nightmare as well.. the doctor was VERY rough.. and i could not have any meds due to allergic reactions.. i was not ready for the pain .. at all. i started to move a litte. and he yelled at me..
" If you keep moving you are going to kill yourself.. your going to perforate your bowel.. etc etc.. ) he was bitching at me.. saying really nasty things... was so rude...

i just lie there... in a state of shock.. in ttremendous pain... crying.. and even being yelled at for crying..

afterwards.. he acted like nothing was wrong.
about 2 months later.. i had to have another one.


this time.. i felt more in charge.. i even changed hospitals..

i took Xanax before the procedure..

there were many comforting nurses there.. the doc was VERY nice. sometimes she was stern.. about me moving around. but. all in all. she was really nice.... although i was in alot of pain.. and my vagal nerve was hit alot.. ( my heart rate was upward over 200 BPM.. and i could feel my heart pounding out of my chest.. i got through it...

you can do it.. change everything.. discuss other possibilities for medication. there are other things that you can take..
I wish you the best..

[parakeets]

Thank you so much for sharing your experience, Mozartcowgirl.  I admire your courage in being able to go through another colonoscopy only 2 months later.  I think your idea of my discussing other possibilities for medication is fantastic, and I hadn't thought of that.  Your post comforted me in that it also reminded me I am not the only one who has had a horrifying colonoscopy experience.  I also remembered what I came to know when I attempted a case against the gastroenterologist--that the major reason I was restrained during the procedure was simply to protect me from having a perforated bowel. I noticed in my records that my heart rate was quite elevated during the procedure and I didn't realize why until I read your explanation).  I hope people here realize that no matter what anyone says to the contrary about their personal experience, colonoscopies can be excruciatingly painful and extremely difficult to endure.  Part of the problem for me was that people told me a colonoscopy was "nothing" and that they "slept through it" and that they "medicate you so you don't feel anything."  That is not true in all cases, certainly not in mine, and part of the reason I would never have one again.  I don't trust anything gastroenterologists say once they lied to me.  In my HMO we only have one gastroenterology practice with a couple of doctors, but I don't trust that practice or that hospital.  If the board doesn't approve my going out of plan, I won't even see a gastroenterologist for an office visit because I won't go back to that practice.  I could not face the possibility of seeing the doctor who did it to me.

[IndianIrishJosie]

I had a colonoscopy on January 8, 2007 and a CT scan immediately afterwards.  I got home and starting hurting extremely bad and began vomiting.  I thought it was gas at first.  I felt worse and worse through out the night.  Called ambulance next morning. I was in the worst pain of my life and knew it was worse than gas.  My colon had been perforated during the colonoscopy.  The surgeon had to remove part of my colon.  Also removed my appendix and gall bladder due to the peritinitis that was in my abdominal cavity.  2 weeks later, an internal stitch popped and caused a hernia and had to have another emergency surgery.  After that, I got an intestinal infection and was in the hospital for a month.  I spent from January to May in and out of the hospital.  I am okay now but I have a narrowing in my colon where it was reattached. It causes pain sometimes when I eat. I had to quit my dental assisting job and it scared the **** out of my sons and my husband.  I turned 37 in June and I'm grateful to be alive.  I have had a lot of colonoscopies because I have Ulcerative Colitis so I thought nothing of the risks they tell you are possible.  Now, I don't ever want another one done.

[parakeets]

Oh, IndianIrishJosie, what a nightmare!  Your story certainly puts mine in perspective.  You poor kid!  Thank you so much for posting.  I hope no one ever has to go through what you did. You must have been in agony during those months in the hospital, and you have been through so much afterwards.  My heart goes out to you.  I was afraid to have another colonoscopy for much less reasons.  My experience was nothing compared to yours.  You have the real "horror story."  Hope things go better.

[April2]

There was something I didn't understand. I thought they sedate you along with the pain medication? They gave me a little bit at first to make me relaxed and sleepy and then when they increased it I must have fallen asleep because I didn't remember any more after that.
My mom and dad had one too before I had mine and said it was no big deal. I'm actually glad I didn't hear your stories before I had mine or I might not have gone through with it! :)
I'm so sorry you guys had such a rough time. I guess I'll have to make sure I get the same doctor again if I ever get it done again because he was real nice. God bless you all.

[parakeets]

Colonoscopies vary from person to person, and from doctor to doctor.  I'm glad yours were "no big deal."  However, the word has not gotten out that colonoscopies can be very difficult to endure in some cases and that silence does a major disservice to the patients who do have a difficult time with them.  I want to warn patients to be aware of what can happen in a "routine colonoscopy" so they can make their decisions accordingly and be prepared.  As my primary care physician told me, "there's a reason they are done under drugs like Versed and Demerol."

[angryincuse]

I had a routine colonoscopy on april 23rd.  I thought everything was fine and went to work for 2
days.  felt a little bloated but didn"t think twice until the mrning of the 26th when I had terrible
stomch pains and could barely walk. Went to the emergency room and yes it was a perforated
colon.  I was in the hospital for 12 days (5 in intensive care ).  I had to have breathing treatments
and be on oxygen for 6 weeks at home as they gave me so much fluid during the surgery that it
settled in my lungs.  Was told its hard to sue these doctors as its one of the risks they tell you about.  Its a 1-2 in 1000 risk but I should have asked my dr. ehat his record was personally.  I
now have to have my colon resected as I had to wear a bag for the past 10 weeks.I sympathize with
you and think drs. need to take more time when they do one.

                 angry in cuse

[Barbarella]

You can get the "Barium Enema" instead.  I do. I refuse a colonoscopy.  It can detect the same things a colonoscopy can.  The only difference is with the colonoscopy if they see a polyp they can remove it right there and then for a biopsy.  They cannot with the Barium Enema.  You've to come back to get the polyp removed.

As for your bleeding hemmorhoids they do "sigmoidoscopies" which is a viewing of the lower colon.  No anesthesia, no horror stories, no pain, just a little pressure that is all.

[Teej66]

CT's aren't the end all when it comes to identifying abnormalities.  CT's do not work as well on hollow organs, like the colon.  We have had patients who had CT's prior to getting scoped and their CT's were clear...however, we found significantly sized tumors.  Thus, having a CT alone should not be an option.

[Jaybay]

How about a virtual colonoscopy with the camera pill?  I don't know how widely available it is in the country now.  Even here in Houston only one doc had the equipment and it's pretty expensive, but maybe worth it for those with such horrific experiences?  As already pointed out, the one benefit of colonoscopy is that when problems like polyps are are found, they can be dealt with right there and then.  Also, biopsies of any suspicious tissue can be taken with colonoscopy.  It's such a tough call.

I have such trust in my gastro doc and he'll probably be retiring in a very few more years.  Yikes!  After all these years I can't imagine having anyone else do one on me.  In my case, I have a pathological fear of having another Air Contrast Barium Enema.  No sedation for that baby, and because of my adhesions, it hurt like H***!   They strap you to a table right from the start because they have to tilt you around to spread the barium around and get different views for the pics.  Frankly, I think the radiologist got a bit too enthusiastic when he got going on the air pump.    "WOW!  Did anyone every tell you that you have a REALLY redundant colon?!!"  Uh, yeah... you wanna stop on the air pump already?!

[parakeets]

Thanks for some alternative suggestions for colon screenings for someone like me who was permanently traumatized by an unethical behavior of a gastroenterologist.  My colonoscopy, and my doctor's ignoring me and restraining me when I was screaming for him to stop, was something I could not bear to undergo again.  For me personally, my colonoscopy was dangerously and horrifyingly abusive.  I hope other people are warned that colonoscopies can be horrendous.

[leolagraham65]

I had my first colonoscopy in 2009 at OU in OKC, OK. I was anestitized. I felt no  pain at all. I woke up and it was all over and done with. The one done  today at OU Physicians here in Oklahoma city was horrific! I was writhing and screaming in agony. I will never allow OU physicians to do another one on me. I did  not agree to this kind of suffering. I just assumed it would be the same as the first one. Why have they chosen to do it this dumb agonizing  way. They were doing it right in 2009. GREED must be involved.  I am so sorry about what happened to  you, but maybe with us speaking out about this procedure maybe they will start doing it the right way that protects patients. What happened to the Motto,  "Do no harm!"

[parakeets]

Thanks for the info that having a CT alone should not be an option, but there are patients who will not undergo a colonoscopy.  What are the alternatvies?

[parakeets]

You tell your story of the Air Contrast Barium enema so well. And being strapped to the table for it?  Why don't they tell people what these procedures are really like?  I personally wonder if some doctors don't also secretly have a hint of a slight sadistic tendency.  My gastroenterologist makes each patient go through three separate preps in the 24 hours before the colonoscopy, and even the nurses on the surgucial unit questioned it.  They kept saying "three? why did you need three preparations?"  My doctor told them "because patients don't follow directions, so I have my patients do three different preps."  It struck me as sadistic.  I should have walked out then and there and not let that man touch me.  Be warned -- colonoscopies are not easy.  But even going through the 3 preps was nothing compared to the procedure, the worst of my life.  Colonoscopies can be horrendous and I just want to share my story.  Had I known things like this happened, I would have been prepared and would have recovered from being a colonoscopy trauma victim sooner.

[streamline]

Pill endoscopies are ony for small bowell evaluation. The best think to do is wait it out and see if the blood continues. If it is blood with no diahreah then I would presume it to be a hemmeroid. However, if you are going over your 'normal' amount to the rest room and loosing alot of blood you may have IBD. I would be concerned if it starts giving you pain.
I have worked with a GI and monitored several colonoscopies. However, I have never hears of such horror. You poor thing.

I have had many colonoscopies and always seem to wake if its anything that isnt anesthesia or propofol.
If you need to do it, I suggest calling different GIs that ppl recommend and asking when they do their procedures do they use propofol. They verse it with a nurse anestatist being in the room with you. There aint hell no way youd wake unless the nurse wasnt here to verse it.

Additonally, if you can get yourself to do it and proceed with the blleding I would get a ct of adomin, +blood work and prometheus testing for IBD. Regardless, colonoscopies become invaluable in finding dysplasia and eventually you may have to. Can you tell you next doctor of your traumatic experience and ask if a loved one can be in th room?

[cat33]

DON'T REMEMBER MUCH ABOUT MY FIRST COLONOSCOPY . I GUESS THAT PART IS GOOD. WHAT I DO REMEMBER IS BEING BENT OVER A HALF TABLE AND HAVING HIM INSERT THIS TUBE UP MY RECTUM. AFTER HE WAS DONE AND I HAD GROANED MY WAY THROUGH IT HE ASKED ME IF ANYONE HAD GIVEN ME ANY KIND OF ANETHESIA OR MUSCLE RELAXANT? nooooooooo. 1979

The next one was in April 2007. Did the prep. Got anesthesia Then  I  looked up and saw the whole thing on screen. Was in pain when he removed it but it was to late.  He later told my husband he had given me enough anesthesia to put out a rino. Well Guess I am not a Rino.

[Jaybay]

Oh Lord!  I've had so many comments like that!  "You've already had the maximum dose we can give you."  "Just what else are you taking anyway?"  "You really needed a LOT of medication!"  No shite Nursey-nurse - I've been in pain mangement on opiate therapy just like it says on the chart right in front of your face.  Ya THINK it might take more to knock me out?!

My first colonoscopy (and last time I ever saw that woman-hating butcher) was done in the doc's office.  I was a newbie to such things and was scared to death.  The experience was a horror.  My brother could hear me yelling and moaning and groaning back in the depths of the office.  They gave me IV meds, but nowhere near enough.  That was the occasion that I got hit with the nurse saying, "We can't give you any more drugs.  You've already had the max..."  Looking back on the whole nightmare I suspect this doc didn't withheld proper medication because he didn't have room in his office for recovery.  He wanted them ambulatory immediately so he could move on to the next patient.  $$$$$$

[parakeets]

Very helpful and specific suggestions, Streamline.  Thanks so much.  I especially like the fact that you have seen a lot of colonoscopies and never heard of such a horror as mine.  The gastroenterologist told me my colonoscopy was "totally routine."  There are doctors like him out there and the hospital and  HMO would not discipline him in any way, so he continues to get away with this style.  I've run into people who had bad experiences with colonoscopies.  I think the reason doctors give patients Versed is that they forget exactly what the colonoscopy was like.  My pain was so bad that I remember everything.

[parakeets]

LOVE the prhase "woman-hating butcher" and can relate 100%.  I like your closing remarks about the doctor not having room in his office for recovery and wanting patients ambulatory immediately.  My docotor was rushing to fit my procedure in the time slot in the surgery room so he could work on his next patient. When I came out of the procedure, they immediately wisked my bed away for another patient and I had no place to sit so I went and sat in the waiting room (this was at a hospital).  I looked terrible and all the prospective patients were staring at me.  I should have stood up and told them all right then and there what had happened, but a nurse came and found me and asked me why I wasn't in my bed.  I said because when they told me to get dressed, they took the bed away.