Severe pain with colonoscopy!

Hi.  I am a 48 yr. old female who has had a history of polyps, IBS, Diverticulosis(found on last colonoscopy), Fibromyalgia, Lupus SLE and chronic pain.  I fell in Jan. of '05 and my world turned upside down (9 surgeries all over my body for much more than just the fall injuries. After all this is when I came down with fibro, Lupus, chronic pain.   I have much more going on besides this but I don't think any of them would have anything to do with my question on a colonoscopy).  I am now on disability.

I have had 3 colonoscopies and with all 3 have experienced severe pain (waking with screaming) during the procedure.  The first time it happened the Dr. kind of just blew it off.  The second time (different Dr.) I told him what had happened and he assured me the meds would not let me feel any pain.  Well, I was screaming again.  The 3rd time I went to the same Dr. and he remembered me.  He told me afterwards he has never had to use as much medicine as he did with me.  I was still screaming.  A polyp was found and removed each time but were non cancerous.  This time the Dr. told me I must have an extremely sensitive colon.

I have been so doped up on leaving I really can't think right to ask questions.  On follow up I have just been told about sensitivity.  My question is...why do I seem to be the only one who experiences such pain and why won't the Dr.s take me seriously enough to just put me out.  I know I need to keep having them done because of the polyps but I am so scared I don't know if I can ever go through it again.  

I started having problems with my colon when I was 11.  One morning I was just doubled over in pain on my bed before school.  I didn't want to tell anyone (I don't know why but I just didn't) but my Dad came in and saw me double over and I told him what was going on.  The Drs. then said I had a spastic colon but later I was dagnosed with IBS.  I have severe cramping which later is followed by constipation then diarrhea.  Every time I eat greasy or spicy foods or become upset about something, I experience severe cramping with nausea and sometimes vomiting.  As soon as I get my bowel emptied I am ok again.  On one of my many trips to the ER, the Dr. almost took out my appendix because my white count was high.  After being on an IV though for a few hours, the pain went away.  I have had my gallbladder removed with 15 stones in it, two years ago.  

My next question is....does anyone think my fibromyalgia would have anything to do with the painful colonoscopies?  I have very sensitive everything!  Sometimes just touching my body and pressing in a little bit causes severe pain. Something else I just remembered, is around the same time (I can't remember if it was before or after my first bout with IBS) I was ciphering gas out of my Dads car for my motorcycle with a cut off garden hose, and it came shooting out into my mouth and straight down my throat.  A lot of it.  Well I wasn't going to tell my parents because I would have gotten into trouble.  I suffered so much for about a week.  Every time I burped it tasted like gasoline.  I burped a lot!  This was one of the worst tastes for such a long time I have ever experienced.  I have since asked Drs. about this and they don't seem to be concerned that it did anything to my stomach or colon.  I was 11 remember so don't scold me!  Oh this was sooo bad.  I hate to even think about it!

I would appreciate any replies if you have experienced the same things.  Thank you!  Also Is there anything else that can be done to alleviate my pain during the procedure?

Cindy  

[mammo]

If I were you I would get copies of all your procedure reports and ask to meet with the anesthesiologist before your next scope.  Ask him what can be done to ensure that this won't happen again.  Maybe you could opt for the camera that you swallow which is less invasive?  I've not heard of anyone who has experienced this kind of pain during a scope, hopefully someone else here can help you.  As for the gasoline, you are one lucky girl!  I had a friend who this happened to, and he died immediately.  Good luck.............

[empressofq13]

Wow.  Had no idea swallowing gasoline could kill you.  I can't believe I survived.  I only weighed about 60 pounds when I was 11 and was about 5'5" at the time.  Extremely skinny.  I also had my tonsils out, and had walking pneumonia during the time between 11 and 12.  God was looking out for me.  

Thanks for the advice.  I will definitely make sure something is going to be done before I have another colonoscopy!  If I ever get another one!  I know I needed to get one a year ago.  

[momkat691]

Yes, I had the same horrible pain when I had my recent colonoscopy.  I was screaming in pain and shaking.  The doctor said my intestines were "looped", and furthermore, he had to use a pediatric scope instead of an adult scope because no adult scopes were available.  They used a whole vial of Versed but still could not sedate me.  I was awake and crying and screaming the whole time.  I got a copy of the hospital records but nothing was mentioned about the lack of sedation or the pain!  I could go on and on...

[Me967]

I remember that pain quite well.  My last colonoscopy was ~16 years ago.  My doctor told me that they give you more sedation now and that I would not have to deal with the pain and wouldn't even know it happened.  Hmmm

My last one 16 years ago hurt sooo bad that after telling him it hurt and then screaming at him didn't work, I tried to punch him while he had the probe up there.  Then he started screaming that someone needed to put me under because I was going to rupture myself.  They removed ~5 pea sized non cancerous polyps at that time, told me to come back in 6 months and then every year there after since colon cancer runs in the family.  As rude as it sounds...I told him I would come back as long as the probe went up him and not me.  It was the worst pain ever!  I never went back for another one.  Three years prior I had a lot of blood in my stools in which is why I had it done then along with IBS.

Well now she wants me to have another one because of all of the problems I'm having she thinks it could be colon related.  She kept saying the stupid "C word" about my girly stuff and now about my colon; I think just to get me in to have the test done.  I agreed to the complete ultrasound of the abdomen and a CT of the abdomen and pelvis w and w/o contrast.  As for another colonoscopy????????  After reading these......I don't think so.  Hoping that the CT with the barium will answer any questions so I won't have to have a colonoscopy.  These pains in my stomach, lightheadedness and looking pregnant due to bloating is frustrating to though along with a ton of other symptoms.

empressofq13  
your comment on  Sometimes just touching my body and pressing in a little bit causes pain...I can relate to that too.  I have not been Dx with FMS, but have questioned it due to pains/spasms threwout my whole body.  

mammo
Do you know the name of the tests were you could opt for the camera that you swallow which is less invasive?  

Also does anyone know if they can totally knock you out now (like as in surgery) ?

[Almitra]

I just had another colonoscopy a few days ago and the pain was so bad that I started screaming and also had severe left shoulder pain.  When the doctor heard about the shoulder he said "she's having chest pain" and stopped.  Chest pain is frequently referred to the left shoulder, jaw or arm.
I too have FMS.  The first time I had the colonoscopy he said the pain was from a twisted bowel.  Rectal cancer was found and my rectum and a large piece of colon was removed. My doc said this would take away the twisting.  Well, the next colonoscopy, I requested a larger dose and I managed to get through it with manageable pain.  The one I had a few days ago was so painful that if they don't agree to do something about this problem I will self medicate prior the test. I have to keep getting regular colonoscopies because of the rectal cancer.  My sister said she slept through her test.  During the test he asked the nurse to press on my stomach while he was inserting the scope.  The pain became unbearable when she did this and I begged her to stop pushing, which she did.  I don't think the medical staff realize how painful this was for me.  I feel traumatized after colonoscopies. I will have a long talk with my surgeon next time I see him and demand that something be done so that I don't have to go through this ever again.
I feel badly for you since I know how terrible it can be.  
Good luck in your search for a less painful test in the future.

[zoopnitcat]

I just had a colonoscopy yesterday, and the other people coming out of it in the hospital room said they slept through it all.  My dad slept through his.  I was sedated through an IV and had demerol as well.  I felt the sedation start and was drowsy, then BANG - INSTANTLY awakened with excruciating pain, I was screaming and yelling. I've had 2 c sections, 1 tubal ligation, knee surgery, gall bladder removal and have a high pain threshold (so says my dr after squeeaing out a large external hemerrhoid w/out freezing).  They had to stop and couldn't continue.  I will NEVER have that again unless under complete general anaesthetic.  I had a barium enema this morning and that was a piece of cake compared to the colonoscopy.  GLAD to hear others have had this pain as well. Am interested in seeing what my dr says when I see him.

[zoopnitcat]

PS after asking a nurse about it she said they had just gotten 1/3 of the way in that's all. (up and starting across)

[zoopnitcat]

I have just read"

http://www.ncbi.nlm.nih.gov/pubmed/12048623   and http://www.springerlink.com/content/t415m24r1l6032q6/
Very interesting, as I am a female and have had a hysterectomy.

[Lynnie1964]

Hello Cindy and all the others who have replied.  I too have had three colonoscopies and each time waken up in the middle with +++ pain.  During the second one I had to be held down because I guess I was thrashing about.  Yesterday was my third...and despite me telling my GI that this occured, and her assurances she wouldn't let this happen again - it did.  She also used a pediatric scope on me, plus gave me more sedation when I woke up mid-procedure.  It was very weird and painful.  I had been talking to her as she sedated me and then woke up with the scope inside me, talking to her as if I hadn't been under.  However, then I recall her adding more sedation.  Afterwords, I had severe cramping in my bowels with great difficulties releasing the gas they tell you that must be expelled.  The pain lasted about three hours.  I am still wiped out today.  I have ulcerative colitis and have had endometriosis (which has attached itself to my bowel).  I wonder if this is why.  

I struggle too because the doctors really minimize this pain:  "oh, it's just the air", which I guess they pump in during the procedure.  It is really, really disturbing for me and given I must have more of these procedures I feel quite disconcerted.  At least I know I can manage it.  I wished my doctor had come in afterwards to tell me her findings and to check in on me.  I also wish they would give some kind of pain medicines afterwards.  All I was offered was a warm blanket for my stomack and told to walk around.

L.

[Shari555]

I have tried 3 times to have a colonoscopy at for profit clinics and each time the procedure was a failure due to my screaming.  The ONLY successful colonoscopies I have had was in the hospital where they used general anesthesia to put me out.  I do have fibromyalgia and truly believe that patients with that condition should only have the colonoscopy with general anesthesia in the hospital.  I totally empathize with those who have awoken screaming in pain with this procedure.  So my advice is to refuse to having the procedure done unless it is in a setting where they will totally "put you to sleep".  The liquid valium just doesn't cut it!

[empressofq13]

Wow!  I haven't been on here for so long and had no idea all of you had the same thing happen to you.  I know I need to have another one done right now.  Way over due!  I am so scared though.  It is such a traumatic experience for me.  Even the prep is horrific!  I have IBS so this really messes me up.  Thank you all for assuring me I am not crazy and I AM experiencing this.  So many people just don't believe me.  They think I am just weak and since I also have Fibro. I just must be a light weight when it comes to pain.  I am not!  I have had some really painful experiences in my life and I have handled them well above others.  Now with the fibro though it is so much worse.  I will post after my next colonoscopy.  Please...all of you do the same and maybe between us, we will all figure out what to do!  Thanks again I am also praying for each of you to not have to go throught this again!!!
Cindy

[marysr60]

I enjoyed your story . my 25 yr daughter passed from colon cancer. i was reading her story through you. I am so sorry you have gone through this. Hang in there and DONT take the doctors word. Mandy was told it was in her head not her stomach. In & out of hospital when little. confined to a mental hospital at 10 yr and told it was in her head. bled form stools, given meds for ulcer. It was a precancerous lesion the whole time. WOW what a life. now it is happening with our grandson 10 yrs old. am afraid when they do the colonoscopy 6/6/12 he will suffer. i was in unbelievable pain and felt no sedation. remember every minute of it. I felt lied to when said wont feel a thing. I think the nurse may of taken my meds and put water in my IV. not fair. just tell me so I will be prepared. it hurt most when the scope went around the corners and more in the small intestines. sorry Cindy. oh my brother drank paint thinner as a baby. pee smelled for 2 weeks. doctor said it was OK. Mary