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Inaccurate information and how the sedation can make it worse

Posted , 3 users are following.

Sara_00139
Sara_00139

I had a colonoscopy with sedation (midazolam and fentanyl) in Chorley Hospital a few days ago and I still feel as if I had a PTSD. I read the information sheet and expected to be relaxed after sedation, with maybe some discomfort. When I was injected with the drugs (midazolam and fentanyl), I suddenly felt very anxious. I tried to seek reassurance, but the physician was talking to somebody else, busy preparing for gastroscopy. I think it could have helped if somebody asked me how I was at that point. I also had some trouble speaking – I think I was able to speak, but I could not hear myself so it made me feel very strange. Later on I read that difficulty speaking is a side-effect of midazolam. I felt quite intense pain during colonoscopy and the kind student nurse was talking me through it. I recovered well, I think, but I remember the whole procedure (so the amnesia that the leaflet talks about obviously doesn’t happen in every case). Next day I was very irritable and anxious and sick later on.

My main grievance is about lack of information beforehand concerning pain and the nasty side effects of the sedation. The leaflet mentions that you might feel ‘discomfort’. Of course you will feel discomfort – you will have a camera up your bum, what are supposed to feel? There is no ‘may’ about it. However, there is a difference between ‘discomfort’ and ‘pain’ and these words should not be used interchangeably. The leaflet and what you are told by the medical staff makes you believe that you will be drowsy and relaxed while medication works, and then back to normal after. I got quite a shock when I had the anxiety attack after the drug was injected and realized how vulnerable and helpless I was. I was also very unpleasantly surprised at how awful I felt the next day. Had I known this could happen I would have opted for entonox. Unless something changes dramatically in the way they perform colonoscopies, there is no way I’m having another one any time soon.

I would not like to discourage those for whom colonoscopy could be beneficial from having it. However traumatic it is, it is preferable to dying from cancer. However, I think that medical staff are not well trained in empathy (only student nurses seem to have it) and you have to be very assertive with them in order to receive honest information. If you are unlucky enough not to experience post-colonoscopy amnesia, the feeling of being at the mercy of medical people who are inflicting pain on you can be disturbing. It might be preferable to experience the pain whilst being alert and able to speak, and thus having some degree of control.

1 like, 8 replies

8 Replies

  • lesley53828
    lesley53828

    Posted

    I had a colonoscopy about 12 years ago and had 8 polyps removed during it... everything was fine a little uncomfortable but nothing bad had coffee and toast after all was well...last year I was sent for another one and found it painful and had 14 polyps removed during it.... after I was called into a room and was handed a letter and the phone number of the ward incase my bowel perforated.. I came home relaxed and was told that I need to have a colonoscopy every year now...Last year I went in and spoke to the nurse first and told her I felt a lot of discomfort last time and wanted more pain relief she said she had to speak to the person who was doing it to see if it was possible well they said yes I had 4 different things in the canula and gas and air when I needed it...they took 8 sessile polyps and they were trying to get one at the top of my stomach I was in so much pain I was screaming I pleaded with her to leave it which she did I am now waiting to see the surgeon my appointment has been cancelled twice.. I am very worried about going back this august for the next one I think the dr will cut the bowel to remove the polyp that they couldn't get as it was to painful..I guess its not the colonoscopy that hurts its the work they do inside what causes the pain I felt very let down last year and am going to tell the surgeon just how unsatisfied I was with it and that no one should be screaming in pain I was in tears after for weeks worrying about the next one that's my true story..but like I say its what they find that causes the pain not the colonoscopy ...
  • Jacq56
    Jacq56

    Posted

    Sara, I very much empathise with your experience.

    I had my colonoscopy a week ago. I am thankful that nothing sinister was found, however I now find myself quite upset about my own experience with regard to the severe pain I endured. I too was told that the procedure is 'uncomfortable' and patients may have discomfort. When I mentioned reading about other patients' painful colonoscopies, the nurse told me it depended on who was carrying out the procedure, and that I should not worry as the consultant doing my procedure was very gentle. Someone has already commented on this site about the Lynn Faulds Wood video which shows her own procedure, no doubt this has helped others, I watched this too and it did make me feel less anxious about going for mine. In the video she is awake and holding a conversation with the consultant during the procedure. However, her consultant states firmly on the video that colonoscopies should NOT be painful, and that if patients suffer pain then the doctor is not doing their job correctly. Tell that to my consultant!

    After my IV drugs were administered (Midazolam and Pethidine) I must have been completely out of it as my next memory is hearing terrible groaning and feeling severe pain which I can only describe as feeling my insides being twisted and pulled out. At the time I remember being shocked at the pain and the noise, I sounded like a wounded animal. I must have been given more sedation as my next recollection is of being in my cubicle bay and the nurse telling me she was bringing me tea and biscuits. I did not ask what had happened, I just wanted to be out of there and back home. The day after the procedure I was quite euphoric that I had been given a clean bill of health, so why do I now feel so down?

    When I left hospital I was told I would be contacted in a few weeks for feedback. I would like feedback on my time in the treatment room! I understand that everyone is different where pain is concerned and that medical staff do not want to cause patients unnecessary anxiety, but to say that the procedure is merely uncomfortable is very misleading.

    Sara, I echo your last paragraph and, like you, I would not want to discourage others, however I feel that medical staff are being less than truthful regarding the pain issue.

  • lesley53828
    lesley53828

    Posted

    I also have ankolising spondolitis and asked them to be careful as last year they were pushing on my stomach which gave me a lot of discomfort the next few days ,,They were aware of this and it was still the same I feel they don't listen ...I will definitely tell the surgeon when I see him end of april how disgusted I am with it all. .if you ask someone to stop because of the pain whilst trying to take as much gas and air at the same time.. And they carry on I felt like I had no... control ..it wasn't like I could get up of the table and say that's enough ..I will post on here what the surgeon has to say now its worrying me going for another one this august.....although I feel next time I will be put out as the one they still left which caused me the pain still needs to come out ..and having my appointment cancelled 3 times is so annoying as I don't normally see the surgeon after ..I guess its to disguss the one still there. and how they will remove it.....
  • Sara_00139
    Sara_00139

    Posted

    Jack56 - of course no one should be screaming in pain. And you should not be in tears for weeks - that's serious distress. Lesley - you should definitely tell your surgeon.And you are right - it's not like we can get off the table!

    I was provided with some evidence today that the vast majority of patients don't feel pain during colonoscopy and that made me think that I should not have felt it either. I should not have been trapped, in pain and ignored, that shows a complete lack of empathy. So I made a complaint to the hospital and I encourage you to do the same, perhaps that will save you or others pain in future. I have been shaking, tearful and could not concentrate or eat the last few days, but now I've complained I feel better.

    But listen to this - I asked the hospital if they have a counselling service for patients in distress after a medical procedure and they said no, but I could talk it over with the consultant! Like I really want to talk to somebody who not only has no psychological knowledge but no empathy either!

    I wish you luck and hope you will not experience any more pain and neglect that you already have.

  • Sara_00139
    Sara_00139

    Posted

    I forgot to add, Jack56 - I also felt slightly euphoric for a few hours after the procedure. I think this was due to the drugs, the fact that the pain was over and the results were good. But if you become distressed than something was wrong in that treatment room.
  • lesley53828
    lesley53828

    Posted

    Im not here to put people of ..Im saying it as it is and I will be telling the surgeon exactly what happened and how im feeling over the whole thing...I would like to say that a colonoscopy doesn't hurt you theres a bit of nigley pain nothing major.. It wasn't until I started having polyps removed that caused me such pain.. and each year its just getting worse apparently the one they didn't get grows in a different way its flat and grows sideways that's the one im having trouble with..14 polyps the year before last and 8 last year plus this flat one....
  • Sara_00139
    Sara_00139

    Posted

    I'm certaintly not saying that it doesn't hurt, because it hurt me, and I didn't have polips. I'm just saying something is done wrong if it hurts and you should never have to get to a screaming stage for them to stop.
  • lesley53828
    lesley53828

    Posted

    I agree with you its just awful.. I think the nurse that did the last one was just going for it the more I seem to talk about it the angrier im getting...she knew I was in pain I had 4 lots of stuff through canula and I was in control of gas and air.. I wasn't in control for myself I wanted to get up and walk but was just in no state to do that and the feeling of them doing that to me whilst I couldn't react upsets me and this cant be right...plus she then topped up the canula again ..Im concerned now to think that this one I have which is flat growing if it grew that much in one year that they couldn't get it out ..how big is it now???and yet my appointment has been cancelled 3 times........im sure I will be going in for an op to remove it...
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