To be utterly terrified of a colonoscopy

[RobynsMama]

I have one in a few weeks time and I’m just utterly
terrified that I won’t be able to cope. I’ve got the option of having sedation but I’m a survivor of a pretty awful sexual assault and I really am not liking the idea of not not being in control. (I’m a nurse, in a completely different field but I’ve seen patients under the influence of sedation and some have reacted quite awfully to it)

It’s not even just that it’s the thought of anyone doing things to me that are in any way invasive, (I also really struggle with going for a smear test.) just makes me sick with fear and anxiety.

Conversely, when I had my DD, I had a lovely, calm home birth and my best friend was there along with a midwife I’d had throughout my entire pregnancy, and trusted implicitly. I know that if I’d needed any kind of hospital intervention, it would have been a real struggle and it played on my mind throughout my whole pregnancy.

I need this done as I’m getting horrible symptoms that need to be checked out. I don’t know what to do for the best. I was thinking of letting them know about my past but realistically what can they do about it to make it easier. Other than asking for a GA (which comes with its own risks and is usually unnecessary for this procedure). I just keep pushing it out of my mind because thinking about it Is terrifying but I can’t ignore it forever

I had the sedation.

I’m not a medic, but have witnessed a bronchoscopy of someone under the influence of fentanyl so I understand your concern.

But you’re a nurse, you know you have to do this.

TBH I’d be more scared of the movie prep 🤢

Well you could have it without sedation so you have a form of control but I don’t think I could stand it personally. When I have mine the sedation knocks me out and the next thing I know I’m in recovery. The prep before is far far worse than the colonoscopy itself.

I sympathise, OP. I can understand why you are worried and why this is a big deal for you.
But I think you need to have a plan that will reassure you, rather than just get more and more stressed as the day approaches. Try not to dwell on it or build it up into more of an ordeal than necessary.
Would it be an idea to confide in the nurse who will be with you during the procedure? She can then give you extra support, and help to advocate for you with the surgeon or gastroenterologist doing the colonoscopy, if you need to pause or are having a panic attack or whatever.
I think if sedation is available, you either need heavy dosage or none. Being only partly sedated could make things worse, as it can disinhibit you and make you unable to control your fear, or cause flashbacks to your assault.
A GA wouldn’t be an option on the day, as there wouldn’t be an anaesthetist attached to the clinic, but if it was impossible to do the procedure any other way, then they might be able to book you into a day case colorectal surgery list - although it would be a last resort and not all hospitals would necessarily offer this.
Colonoscopy is a bit uncomfortable when they are inflating your bowel with gas to view the lining, and a bit undignified just because it involves your rectum, but usually the team would do their best to put you at ease and talk you through it.
As another suggestion, would it help to listen to music via headphones during the procedure, and just dissociate yourself from what’s going on?
Have a think about how you would like to handle this, and what things you could ask for that would make it more bearable for you. I think if you are able to discuss it, you will feel more like an empowered participant, and in control, rather than a passive victim having something done to you.
Best wishes for it, and I hope all goes smoothly. Focus on how relieved you’ll feel when it’s all over, rather than dreading it in advance.

I have them annually and would definitely recommend the sedation - it really helps and you don't feel out of control at all as you are constantly monitored and reassured. You just feel very relaxed and a bit hazy. The procedure itself doesn't take long at all. The bowel prep is the worst bit by far. I don't think there is any harm in mentioning your worries - they may be able to offer you some extra support.

Friend of mine swallowed a pill with a camera in to take photos all the way through....would that be an option?

I had one about two weeks ago without sedation, I felt that I could have stopped the procedure at any time, was talked through everything that was going to happen before it did and was reassured all the way through.
I wouldn’t suggest it as a nice day out but it wasn’t as bad as I thought it might be. I am registered blind and feel vulnerable enough without taking sedation as well.
It did not take long and I had no ill effects afterwards.

I have to have them regularly. I tried once without sedation and it wasn't great.
Some hospitals do offer gas and air instead of sedation. I always am sedated, but it doesn't do much for me apart from make me not really care what's going on. You are aware though as they ask you to change positions. I think perhaps the dose is lower than other procedures for this?

Maybe contact them beforehand and ask if you can have gas if you really want to (I would recommend something), or would you feel more comfortable with a chaperone? There are usually 3 or 4 people in the room, last time I had it done a lovely nurse held my hand the whole time.

Have to agree with Hoolihan. I’d definitely have the sedation. Before I had one I knew people who’d had the procedure without and said they wished they’d had sedation. I was absolutely dreading mind but remember very little about it except being asked to turn on my left. Hazy is a good way to describe the way I felt. Couldn’t believe it when they said they’d finished. Never felt a thing.

Would it be possible to ask if your partner or a friend could stay with you during the procedure? Having a trusted person there to act as your 'conscious self' while you are sedated might be reassuring?

I had a colonoscopy under sedation years ago, and it was really not that bad, but appreciate that your previous trauma will make it a big thing for you. The sedation means that all your memories of it will be fuzzy and may disappear soon, which is probably much better than doing it fully conscious, even if you do feel more in control.

I had a colonoscopy last week with gas and air instead of sedation. I don’t like being sedated, and at least with gas and air it wears off very quickly once you stop inhaling it. I just took a few breaths when it started to get uncomfortable, and then it’s like I still knew it was uncomfortable, but it didn’t bother me any more/I didn’t care. If I have to have another colonoscopy I’d definitely choose just gas & air again.

I’ve had one before (I’m also a nurse) and like you I was pretty terrified but it was honestly fine.

I was given the option of sedation but decided against it and I didn’t need the gas and air either.

The team doing it were amazing, I had two nurses with me who did a great job at keeping me calm and then two doctors, one of whom was doing the procedure. He was also really calm and was explaining everything to me as he was doing it and telling me what sensations I would feel. The worst part was when they turn a corner and when they use air to inflate the bowel but it was manageable and I just breathed through it.

The whole thing was done quite quickly and then I was taken through to recovery for tea and biscuits.

It obviously wasn’t the most pleasant experience but it was nowhere near as bad as I had feared.

I had mine without sedation. After the camera was put in I lay on my back and it was more comfortable. Added bonus I could leave when I was ready afterwards.

The prep the day before was honestly the worst part. I wore tena nappies to and from the hospital to give extra confidence.

When I need another one I'll definitely not be having the sedation. You can have a canula put in anyway just in case though.

DH had one in the Summer without sedation. They gave him the gas and air to hold just incase but he didn't use it. He said it was fine, he just got a couple of stomach cramps, that was all. His pain threshold is non existent so I was surprised he coped tbh.

As a nurse seeing the procedure or similar is probably worse in some ways as you’re aware of what the patient is going through when sometimes they’re not really. I was watching an attempted procedure where the sedated patient was gagging and retching and she’d said to me before she was worried as she hates being sick. So afterwards she told me she was glad she hadn’t had anything like that- she didn’t recall the gagging and retching part at all. I believe the medazolam is precisely for that- sedation with forgetfulness attached.
But @Babdoc also had some fab advice about the control aspect for you. Best wishes.

I opted for no sedation which was a big mistake. I really felt violated and the sensation was awful.

They gave me sedation about half way through. It was fine from that point on and I ever need another I would opt for sedation without question.

If you are able to I would let them know your history. It will be something they sadly encounter far too often.
I had to have an endoscopy and I didn’t want to say anything about my history but was absolutely terrified. Finally managed to blurt it out to the nurse and honestly she was great. They gave me numbing spray but no sedatives and she held my hand and really kept my grounded.
If you can speak to them about your fears- they will be able to come up with a plan to make it easier and less traumatic for you.
Good luck

I would most definitely speak to the team and discuss your concerns with them. Working out what's best for you (home birth meant less intervention etc) has allowed you to be in control of decisions over your body in the past so why is this any different.
Talk to the team, work out a plan together and if you're not ready for the procedure, discuss your options.

Opt for cannula one case you want analgesia are any point and gas and air

I've had them with and without sedation (have Crohn's disease) and would definitely recommend the sedation. As a PP mentioned, the air they use to inflate the bowel is really uncomfortable.

It would probably be a good idea to make contact with the colonoscopy team prior to the appointment and discuss your fears and why you feel that way, although I appreciate this may be difficult for you. The people who do these are aware that for most people it is an unpleasant procedure and will usually do their best to help.

I wasn't offered sedation with mine. I was terrified too but it wasn't that bad. The worst bit was the application of the gel. It was cold and stung slightly for a moment. The actually procedure was fine though.

Agree with Savingshoes. I’ve got one next week and the info pack says to call them (nursing team) with any concerns or queries. I’d do just that, OP. As a pp says, they must have encountered your situation before.

(I’d imagine that PPs saying that the moviprep is the worst bit, or ‘have the sedation, it makes everything hazy’ is not very helpful given your concerns )

I'm not really sure of the difference between sedation and anaesthetic but I was completely knocked out during my colonoscopy with endoscopy last year. I woke up in a hospital bed and felt great. As others have said the prep is the harder part but the procedure itself was fine.

I know everyone deals with things differently but Ive suffered a serious sexual assault in the past (when I was asleep) so completely understand how you feel, but I trusted the doctors and focused on the necessity of the procedure.

If you have private health care with work I highly recommend using it. Mine was at london bridge private hospital which was like a hotel. Private room, spa toiletries, tv and a 3 course amazing lunch. I was actually a bit sad to go home after.

I wasn’t sedated and drove myself home afterwards. It’s really ok and not much worse than a smear. Please don’t be afraid - you can be in control if you discuss with the staff.

I've had two, one with sedation and then the second one without. I much preferred the second one. I liked being in control and they gave me an IV painkiller to deal with any discomfort, but it was honestly fine. They told me the only reason they recommend sedation is to help people overcome their inhibitions about an embarrassing procedure, it isn't an inherently distressing procedure unlike the old tube down the throat.

I would definitely tell the staff about your background so that they can make it as easy as possible for you.

Good luck!

Might be worth having a talk with a psychologist about these sorts of interventions? They might have practical strategies to teach you.

In the end, I always tell myself that I’m very very lucky to live in a country (and health system) that gives me access to these medical procedures and trained personnel. You know what must be truly horrifyingly anxiety-provoking? Having symptoms, and no access to testing or treatment. Basically knowing there’s nothing to be done bar prayer.

Gratitude gets me through lots of anxiety situations. Maybe it might work for you? Think of how many people on the planet would LOVE to have your appointment?