AWAKE for colonoscopy

I will now always ask for the propofol iv sedation, I had it the last two prior to this nightmare colonscopy and it was great, went right out then woke up quickly and wasnt sleepy or groggy at all after. I will not ever let them use versed again. I did call the patient advocate at the center i was at and of course so far no one has returned my calls yet. I think when you begging and crying for them to stop they ought to stop, i fought them so hard that the next day my bowels were sore through to my back, it was awful. They told me the propofol was too expensive and they dont have an anesthesologist at that center so that will be the last time I go there!

Oh my!
I have my 3rd colonoscopy on Oct. 2nd and after reading this I am going to make sure they really put me out! I have always thought to ask if I woke up during the procedure! The first one one was when I was first diagnosed and well I won't even go there but the second was about 2 years ago. I felt fine after and didn't remember a thing but I do wish my husband could come in the room for it to tell me if I say anything!
I believe in a pain free colonoscopy that is for sure! I am sorry for some of your experiences!

DON'T get ME started on doctors who do NOT stop during a painful scope when the patient is crying and begging them to stop!!! Simply because it is a hassle for them to get PAID by insurances if the scope is not complete. I would take this all the way to the top! The risk of perforation is so much greater if you are struggling and the nurses and staff have to hold you down. Too many don't give a darn and rely on your not being able to remember!!

why do they not put people out all the time?  i have a scope on the 2nd and my doc already said it's general for me...phew!  after reading this thread i think i'd run if he said he was not going to put me out!

I have screamed and cried through all my colonoscopies. In July I had to have another one after a massive bleed... I told him about being awake during all my procedures and could he give me something even stronger... well he told me he could only give the twilight stuff( which does nothing but make my mouth dry and eyes a bit blurry) so that if he needs me to move during the procedure I need to be awake.... He had done an endoscopy the week before, and I was awake through the entire thing too... boy did it hurt. I've also had pain in my esophagus and stomack ever since. '
He even removed polyps which was sooo painful... I wanted to kick him... he did biopsies etc...
I have a friend who goes to a different GI and different hospital in the same city and says she sleeps through all of hers....
Isn't there a standard protocol.
I don't think people who are in pain already from their disease should be exposed to more excrutiating pain during their tests. It makes them want to never do the test again.... which is not good.
Anyway , thought I'd add my five cents.
P.S. He saw a bunch of polyps in my stomach too and only took one biopsy...and then left them there... I 'm more than a little concerned... I keep thinking they are just sitting ducks for cancer to develop.
The never-ending trials of having CD.
Mary

I am VERY glad I read this thread! I've had 4 scopes - 3 full colonoscopies and 1 sigmoid colonoscopy. The first 2, not much. I woke up in the middle, but my doc immediately shot me down with more meds (good doc!). Well, the 3rd one in march when they found my start of my flare? OMG! They kept shooting me down with more and more meds and I remember moaning and telling them it hurt it hurt. I cried it hurt so bad. It took me something like 3 or 4 hours to get out of recovery (should of taken NO more then 1 hour) because the pain was SOO horrid. There was SO much gas in my instestines and then the diseased area....it was just simply miserable. The nurse was AWFUL. She kept saying "I'm sorry, you need to practice your breathing exercises." Apparently, she saw that I suffered from anxiety/depression (No joke lady, wouldn't you if you had chronic illness that affected your ENTIRE life!), and thought this was some "anxiety" attack. My doc came in twice and just kept trying to tell me that he really couldn't give me ANYTHING for pain because it would slow down moving the gas. Okay, I understand that, BUT, guess what, my pain on a scale of 1-10 was AT LEAST a 9, and I don't USUALLY go higher then a 5, I tolerate pain well...

Now, my sigmoid? I did wake up, and as soon as I did, the doc shot me down fast. I was SO terribly inflammed, he didn't even go very far with it. Of course, they were shooting me up with Dilaudid among the twilight drug too. So, I'm sure the combo made it bearable.

I have so much perianal disease and now they are finding it sporadically around my colon too, so the colonoscopies are almost too much to bear. I'm actually pretty terrified of undergoing another one at the moment. I'm undergoing a clinical trial soon, but the only requirement was a colonoscopy within the last year, I lucked out there.....

I'm glad to see this, I'll be discussing this big time before my next colonoscopy. I SOO do NOT want to go through that pain again. I slept through the rest of that day, and most of the next day and luckily, I had a few pain pills at home (Just Norco) and I took one and was able to get SOME pain relief.

Oh, I SHUDDER at the pain of my last scope....

yes, i had a horrible experience during my scope. i was given versed and dilaudid. i remember rolling on my side, i don't remember the insertion but next thing i know, excruciating pain, i was grabbing for the nurse and the gurney and crying. the nurse said "i am so sorry! we can't give you any more pain meds, your blood pressure dropped too low!". my strictures were so tight he couldn't get the scope through and virtually he had to pop the stupid thing through my strictures. afterwards he told me that's why i was in so much pain. so i watched part of the show and watched as he took some biopsies. needless to say, i am afraid of going again. i was awake for all of my endoscopy, some parts were fuzzy but i remember just about all of it. it was interesting!

but i am sorry you had to go though this :/ i feel for you!

Dear Awake and other Crohnie Buddies,

   When I had the scope they used to DX my Crohn's, they kept me pretty well down. I remember nothing, but slept for 3 day's after. I thought they may have pierced the back side of the blood vessel they used for the butterfly IV, and the Valium they used seeped into surrounding tissue. They told me later this was not possible, I donno , I'm not in that field. I brushed it off, I was suffering from terrible fatigue at that time and blamed it on the fatigue. Anyway, I was glad I did not remember the procedure because in the past I have awakened twice while under general anesthetic, when my Blood Pressure fell and the Doctor's had to lower the dosage of the medications they were using . I have had several Anaphylactic shock reactions in my life, and the most fearful responses I have ever seen these professionals exhibit have been when a patient's blood pressure falls below about 60-70. I've never seen small spaces fill so fast. Some of your stories sound extreme, and I would probably seek out a different health care provider and see if it is any different. It is never a great experience. I would need to trust my Doctor completely, and then I could withstand more, if he/she told me it was necessary, but never if I doubted my Doctor. I suffer enough from the illness, I would not risk further unnecessary pain. I hope none of us ever go through this being awake during a procedure again.

                                                                                                       Mary (Margie)

I am so glad to read that other people have had the same terrible experience of waking up during their procedures and having their physician acting like it is a "problem" with the patient.

 

I am 36 yrs. old and a registered nurse (so I have been on both sides of the IV pole) and have had Crohn's since dx in 1995, I was symptomatic 2-3 yrs prior but had no insurance so I had no healthcare.

 

When I was first dx (in '95) I had a very caring and supportive physician, unfortunately he retired after a year or so of my being his pt., and I "inherited" the genius that followed.  The man is a genius, truly.  But he is not a genius with bedside manner. 

 

Needless to say, I have had numerous scopes, upper and lower, had tons of meds-so many that now I am wearing a 100mcg Fentanyl patch and taking Percocet 10/325 daily because of the tolerance I have to so many other narcotics- and now I see a pain mgmt. physician (an anesthesiologist) to control the joint, bowel and other pains I have.  I also have osteoporosis with fx's in my thoracic and lumbar spine and osteopenia in my cervical spine and Lt. hip.

 

Now, for what I actually wrote in for---"the awakening during the scope" AKA: TADS.

During the last 3 scopes I have awakened, once was during a flare, the other 2 were not. Once my IV infiltrated, and as I lay screaming and crying the Dr. continued to tell me that he couldn't give me any more meds (of course I was on my left side and so was the IV), the next time, following 24 IV attempts -yes, 24- and finally one successful in my foot ( I was terribly sick and dehydrated), I woke up and following the procedure he (the Dr.) told me and my husband that, "She must have had some kind of childhood trauma during a procedure that makes her react this way." because he "had never had a pt. act that way during a scope", the 3rd time was a little better, I got ---requested---a Port-a-Cath and had no problems with infiltration, "blowing" veins, needles falling out or small bore needles being used (because of dehydration) so the fluids can't be ran in too fast. 

Being told that I had had a trauma was non-sense, I have/had never been ill a day in my life other than the usual child hood diseases and had never had any kind of procedure.  I really felt bad, like it was my fault, or like he suspected me of a drug user/abuser, and that I am not.

Anyway, I am glad to have found a website where I can "vent" and read others experiences, I don't feel so alone.  I am glad I am not the only one that has had this issue, now I have something to add to my explanation of "...but I've never had anything other than childhood diseases...."

I wish all of you the best, and I am also wondering.......do any of you take Remicade?

I have been on it for 2-3 years, yes, I guess it is keeping my CD in remission, but I worry about what  else it is doing to me.  I stopped it last year and had a reaction---never felt so bad---but my joint, muscle and bone pain is horrendous.  I worry about the chance of CA too because I know it increases with taking Remicade, but it increases with CD too.

I turned down Humara and have been on one or more of the following since 1994: Asacol, Pentasa, 6MP, Prednisone, Cortisone enemas, cortisone suppositories and others that I cannot recall at this time.  Now that I have osteoporosis, I have had to add Forteo to my regimen also (a SQ injection you take daily for up to 2 years).

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IF YOU HAVE TAKEN PREDNISONE, CORTISONE ENEMAS, SUPPOSITORIES, ETC. FOR  AN  ON AND OFF PERIOD OF 2 OR MORE YEARS (count the hospitalizations too) PLEASE ASK FOR A  Dexa Scan or Bone Density Test.  NO MATTER WHAT YOUR AGE/SEX IS, ASK!!!!  AND IF YOUR DR. SAYS "NO", FIND ANOTHER DR. THAT SAYS "YES".  WHEN MINE WAS FOUND, I WAS THE YOUNGEST PATIENT MY PHYSICIAN HAD EVER SEEN OR TREATED (I WAS 32) AND MY LIFE HASN'T BEEN THE SAME.  NO SKIING, ROLLER SKATING/BLADING, ICE SKATING OR OTHER ACTIVITIES THAT MAY INCREASE YOUR CHANCES OF FALLING, AND I HAD TO CHANGE MY DIET, EXERCISE MORE AND TAKE MORE MEDS.  PLEASE DON'T PUT IT OFF!!!! STEROID USE ALSO LEADS TO CATARACTS AND OTHER LIFE ALTERING PROBLEMS

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Boomer I've tried Remicade in 2006 and a week after my first infusion I got serum sickness and ened up in the hospital for almost a week. My blood pressure dropped to something like 60 over 40. My throat closed up and my joints hurt so bad I couldn't even open my mouth to eat.

I am always awake for colonscopy. I get lots of pain meds but i am wide awake.
Would not want to miss it :)

I want to be aware during my colonoscopy for my own safety. With a bowel as friable as mine, I want to be awake and aware in case there is a perforation. My GI understands this and works with me during the procedure. I get an infusion with a bit of valium, so I am relaxed but aware. He stops when I say stop and doesn't proceed further until the spasm relaxes. Actually, he's more afraid of hurting me than I am of being hurt.

I have had quite a few colonoscopies done over the years,and for all of them except the first one done when i was diagnosed,i was awake the whole time.They gave me a drug called petedine and there was hardly any discomfort even when my dr told me that my insides were severely inflamed.