Hi Caz

I had a colonoscopy last Monday 22nd May 2023. Having been told by all nurses et c that although an unpleasant procedure it would not be painful. I opted for sedation and had entinox, it was the most awful, painful 45mins I've ever endured. I agree with you that this should not be happening. How I got through it was sheer fear that I would have to return to have the procedure should I shout Stop!

No-one should have a procedure that is so painful, that shouting out in pain did not have any effect on the staff to give more sedation or stop.

I won't ever have another one without being sedated fully.

Sue

Hello Redcoat and thank you for your post.

You have replied to someone that posted some time ago, so you may not get a reply from them.

I am sorry to hear about your experience of having a colonoscopy. We know that this can be an uncomfortable or painful procedure for some people.  However, they are still the best type of investigation to use when the inside of the bowel needs to be looked at.  Therefore, if you are ever in a position where you need to have one again do talk to the team before you have it done and remind them of your experience and ask what can be done to help you have it.

Please get back to us if you need any more information or support.  You may find it helpful to talk things through with one of the nurses on our helpline.  The number to call is Freephone 0808 800 4040 and the lines are open from 9am till 5pm Monday to Friday.

Take care,

Caroline 

Hi - I am afraid of this happening to me - so I've turned down the kind offer of a colonoscopy with "conscious sedation".  Several family members have described their experiences and have said "never again" (one didn't complete it).  

According to the BCSP "enhanced sedation" should be catered for in a small minority of patients - I wonder what that criteria is?  I've seen learning difficulties and restless legs syndrome  mentioned so far.

My GP did offer diazepam as well - but it had little effect on a trail run - I realise their hands are tied in what they are allowed to offer unsupervised though (I have an alternative supply but I'd rather not risk taking too much).

So I am kind of stuck - I can't remove the FIT test result from my medical record either.

Hi - I am afraid of this happening to me - so I've turned down the kind offer of a colonoscopy with "conscious sedation".  Several family members have described their experiences and have said "never again" (one didn't complete it).  

According to the BCSP "enhanced sedation" should be catered for in a small minority of patients - I wonder what that criteria is?  I've seen learning difficulties and restless legs syndrome  mentioned so far.

My GP did offer diazepam as well - but it had little effect on a trail run - I realise their hands are tied in what they are allowed to offer unsupervised though (I have an alternative supply but I'd rather not risk taking too much).

So I am kind of stuck - I can't remove the FIT test result from my medical record either.

Hello and thank you for your post,

I wanted to pop on to the post as it has been 2 years since the last post.

I am sorry to learn that you need to have a colonoscopy and that you have decided to turn the procedure down.

I wondered if you have had a chance to speak to the team in the endoscopy unit or a doctor at the hospital about your concerns. They will be able to explain what type of sedation they can offer. It is common for people to be offered sedation, but they can choose not to have it. It might be worth seeing if it is possible to have a scan instead of a colonoscopy at this point.

If you would like to talk things through with one of our nurses on the helpline you are welcome to call us. We are available between 9am and 5pm Monday to Friday freephone 0808 800 4040.

Take care,

Jemma

Thanks Jemma - your support is much appreciated - I have spoken to the endoscopy team - they can't offer enhanced sedation list (propofol) - (I think different department) but are happy for my GP to give me diazepam to "get me into the room" - however, as the dose has to be so small this had little effect unfortunately so I cancelled the appointment.  I found a private provider offering propofol sedation but they couldn't accept me under diazepam as well! This was both here in the UK and in the US so throwing money at it failed.

My partner has had a colonoscopy at the same department 5 years ago - they are very much of the grin and bear it approach so they managed it but said they wouldn't repeat it (despite the Midazolam/Fentanyl sedation).

My "fears" are long standing - be it eye exams or dental treatment - you get very good at avoiding things over the years.

Hi I went to have one yesterday and they were going to remove any polyps and a strange fibroid which showed up on a scan. However I have a haemophilia problem so decision taken not to to it but to admit me to say surgery under general anaesthetic so waiting for an appt now for that. I must admit after reading these comments I would prefer to be out to sleep so it’s obviously an option to be put under. 

Hi Lisa3968 - I hope it goes ok and you don't have to wait too long.

The consultant i spoke to said the common reason to abandon a colonoscopy was a "technical difficulty" such as yours rather than distress over the procedure - as a reason for me having an attempt.  I am curious though, did you have to do all the prep and turn up for the appointment AND then be told they wouldn't proceed as they surely could have established the risk well in advance?

Best of luck!

Exactly -  they had it on my records about my haemophilia so it was overlooked and luckily I mentioned it then she went to check and said no cannot risk it so need to be admitted as day surgery 

lisa 

I had a Colonoscopy 2 days ago and still in much pain from the unsuccessful event. The bowl prep was taken on the dot and all done correctly, this is bad enough, but I do understand the need to empty the bowl.  The consultant could only go in a little way due to the bowl not being clear enough but the pain for just a short time and with extra sedation was almost unbearable.  I will never have this done to me again. In this day and age there needs to be a kinder way to investigate I am having a scan done and hope they can see what they want. If I am seriously ill then so be it. I am still in pain today and feel I've been treated on a production line with little compassion.

Hi JuliaMac, and thank you for your post.

I am sorry to learn that you had such a distressing time with your colonoscopy.

Do let the team at the hospital know if you are still having a lot of pain as they may be able to advise you.

I'm sure the scan will be a lot easier, if you need to talk things through with one of the nurses on the helpline, please feel free to give us a call. We are available Monday to Friday between 9-5 and the freephone number to call is 0808 800 4040.

I hope you can recover soon,

Take care,

Jemma