Colonoscopy Pain

I'm so glad I found your post. I had a colonoscopy with sedation this morning and it was excruitiatingly painful. I was wide awake throughout and in so much pain that I had to be given two doses of Pethadine, not that it made much difference. When it was over at last, I felt shocked and traumatised by the ordeal. The consultant seemed to think I'd made a fuss about nothing, though the nurses who looked after me were much more sympathetic and understanding. Ironically, ten minutes after the colonoscopy finished, the sedation seemed to kick in and I fell into a dazed stupor for the best part of an hour. Never again! If I ever have to have one of these barbaric procedures again I will insist on a general anaesthetic and pay for it if I have to. As far as I'm concerned, all the websites I read which said that colonoscopies are not painful are simply telling lies. Be warned anyone else facing one!

I had my first ever Conoloscopy (with no sedations just G&A) today and I am in shock still. They asked me if I had any questions before they started the procedure and ofcourse being the anxious annie that I am I asked ''how much is this going to hurt me''. The nurse advised me it isn't painful - just abit uncomfortable. Uncomfortable isn't a word I'd choose to describe the ordeal, more like TORTURE. It was so so horrific. PLEASE ask to be sedated. I was crying in pain, the nurses were so lovely, one stroking my hair whilst the other fed me G&A and another nurse was cheering me on telling me how well I was doing. Cut a long story short, the camera exited me and I was left to feel traumatised from this experience, I feel really upset that I wasn't pre warned about how painful this was going to be. Almost like somebody digging at the raw flesh inside your stomach with a knife. I don't mean to scare anybody, alot say it doesn't hurt at all which I believed and now know that them saying that is 100% far fetched. I am writing this to pre-warn people about the unexpected level of pain and if this will stir somebody to have sedation and not go through what I have been through today then I am happy to share this really unpleasant experience.

When the hostpital comes back to you, ensure you speak to your consultant and ask them what they can offer to make the procedure more tolerable. You don't say why you had the colonoscopy - I am assuming it was for colorectal cancer screening? A CT colonography is less invasive and should be far less painful, though if it did show anything then you'll need a colonoscopy anyway to gather biopsies or remove polyps. 

I think even the maximum amount of midazolam and fentanyl they would be willing to give you would not touch the type of pain you had to endure. Even with sedation and analgesia, about 4% of patients have 'moderate' or 'severe discomfort'. This is dinner table talk for 'hell will freeze over before I have another colonoscopy'.

Public Health England say that your hospital should be able to offer you a different sedation - propofol and this will knock you right out. It is safe and is the sedation of choice in USA and Germany but it does require an anaesthetist to be present. Some hospitals run a colonoscopy list under general anesthetic, but I doubt this will be offered for just screening. Whatever your hospital can offer, your consultant has an obligation to link you to a service that can help. You may have to keep pushing until you get an answer.

The sedation can impair your thinking and balance putting you at risk of e.g. a fall. Having a fall at 71 can often not end well. Having said that, they would not have stopped you from just walking out - while they way they spoke might make you think you had to obey their 'rules', it is only advice.

I am sorry you had to go through that.

Thank you everyone for your help and kindness. Msralyn. 

Hi, I had a colonoscopy 5 days ago in Kent with so called sedation.  I'm still traumatised from it.  The pain was horrendous and the more I groaned the rougher the doctor got.  It was bloody barbaric and I still can't believe it happened..  

I am making a formal complaint.  To suffer like that is not necessary in this day and age.  I need another but hell will freeze over first.  I've asked for GA but been told I'd wait forever with waiting lists as they are so I asked for a CT instead and was told the colonoscopy department can't arrange that.

I will speak to my GP tomorrow to see if she can organise something.  Personally, I think they owe it to me.  Everyone in the room knew how much I was suffering and they still continued.  Kept saying nearly finished, nearly finished, which made me hold out.but it was another 20 minutes of agony.  I've given birth to twins and it trumped that about 10 times.  It was brutal.

I feel really angry now, which is better than the blubbering mess I was, and it will help me fight my corner.  That doctor is not going to be the cause of me not being able to get further treatment.  I hope I get a letter like yours Dor06

I'm so sorry to hear about your horrendous experience and fully understand your frustration and trauma, I've had this done myself and refused to have another one, I did end up with a scan but it depends on where they want to investigate.  I assume you must have read my latest posting about receiving the telephone call from the patient experience team but I raised 15 points of lack of care and my husband died five days after coming home.  But if you want to make an official complaint then please contact the Head of the Trust that carried out your colonoscopy and ask why the procedure was allowed to go ahead when you were in so much pain.  Until we start standing up for ourselves and our loved ones nothing will change.    I hope you get the answers you want.  Carol 

Earlier this year I endured a similar ordeal to you. It breaks my heart to read yet another brutal account.

I put in a formal complaint and eventually had a meeting with the physician, the head nurse and the department director. The physician apologised for not administering additional pain relief when he could clearly see I was in agony. He could provide no reason for neglecting my distress on that day. He answered all my questions and explained how my experience had caused him to reflect on his performance. The department accepted their responsibility to improve the treatment of the 4% of patients who find the procedure intolerable. However, no one in the room could offer a compelling account of how they would achieve this as they weren't looking to expand their GA list, which was already failing to keep up with demand for child patients and those with learning disabilities.

I wasn't completely sure what I wanted out of the meeting, but I do think it helped. You may not find your physician as honest or forthcoming in their failings.

Thank you.  I am waiting for someone to contact me regarding my complaint and still waiting to see my GP about further treatment.  I will go to the Head of Trust as you mentioned if they don't take me seriously.  I'm very sorry about your husband.  Just when you think it can't get worse it does.  Susan

Thanks Dave.  I have only spoken to nurses so far and they have been very sympathetic and repeatedly apologised for what I went through.  I'm promised a call today to get my formal complaint under way.   

I'm glad your meeting helped and now I wonder if I'll be offered one.  I would certainly go if I am and I would hope my doctor would be as honest as yours.  Frustrating though when they know something's wrong but don't know how to put it right.  We'll see

Hope you get it sorted - I am going to refuse my COLONOSCOPY. I know someone that works in that department and they said a lot of people just run out!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!

I had the exact same response from the doctor that was doing my colwhen I screamed out in pain I've had 4 in total over a few years and I refuse ever to have another I had back and tummy pain for months afterwards Doctors and nurses are generally extremely  sympathetic but certainly in this area of medicine it doesn't appear to be the case

Update from me...I did put it a formal complaint.  I had to wait 16 weeks for a reply and even then it was late.  The response was, ready for it, I hallucinated everything due to the pain relief.  (I should be so lucky!)  They minimised everything and gaslighted me.  Needless to say, there is now another complaint which isn't nearly as polite as the first one.

Update from me...I did put it a formal complaint.  I had to wait 16 weeks for a reply and even then it was late.  The response was, ready for it, I hallucinated everything due to the pain relief.  (I should be so lucky!)  They minimised everything and gaslighted me.  Needless to say, there is now another complaint which isn't nearly as polite as the first one.

Well that sounds appalling. Would you consider redacting all names and details from your letter and posting it here? If you are continuing to persue this complaint it might be best to wait until it's over though.

Thay want me to have a colonoscopy next week, i said only if you knock me out.he said thay could not.i cannot do this again the time before i black out,only to awake in worst pain than child birth.i am still traumatised  by it,everything you read says its uncomfortable, thay must be mad,thay should all have it done to them,then thay would know how we feel.glad to be able to tell someone.

Im with you all the way,i about to have another one,i keep crying remembering the old one.i no i will not let them,its like putting your hand in a door way,slamming the door on it,then asking you to do it again.you would not do this to a animal.

Hi, I'm not sure that you saw my response from yesterday, I can't see it on here.  Like you, I said never again.  But then I changed my mind.  I decided that the 'doctor' in question would not stop me getting treatment if I needed it.  Nothing sinister was found in my first colonoscopy but they said I should have another in six months and I was determined that he wouldn't stop me from getting it.  As my complaint was still ongoing, I arranged with the bowel screening team to have my second procedure with another doctor in another hospital.  I found them to be very helpful.  I had the procedure and because of what happened last time, they changed the ratio of drugs and I was given less sedation and more pain relief.  I'm happy to say this worked for me.  This time, the procedure was shorter which may be why but I'm sure it also helped that the doctor was gentle rather than acting like I was a piece of meat.  My second procedure goes to show that there is no need for this to be such torture which is why I'm taking my complaint to the Ombudsman now.  No one should have to go through what we have.  Like you, I was traumatised, but this has also improved since the second procedure.  I hope you feel better soon and can arrange a way in which you get any treatment you may need in a civilised way.  It's important to know, which no one tells you, you can tell them to stop.

I gave my response to their response on 17th November.  Got a reply last week in which they upheld everything in their first response.  Even though I had proof that they there were inconsistencies in their response.  I'm going to the Ombudsman now.  When that is complete, I will upload their redacted replies.  Thanks for your interest.