CT Colonoscopy with Dye - too scared to have the procedure

[shesellsshesellsbytheseashore]

Hi All
I have been told I need to have a CT Colonoscopy which in itself doesn't bother me, however, I have had so many invasive tests up to now, I've had 3 pelvis and abdomen scans, 2 trans vaginal scans, a CT scan of the abdomen and a CT scan of the chest.

My CT scan of the abdomen came back as "abnormal" so they now want to do a CT colonoscopy.

My issue is with the dye.. when I had the very first CT scan of my chest all of a sudden a minute or so after the dye was injected i couldn't breathe - it was very very scary and everything just felt as if i was being squeezed and I just couldn't breathe!

I told the nurse when she came back into the room that I really struggled to breathe for a few minutes and was about to call for help and she just said oh dear and shrugged it off, helped me off the bed and just totally dismissed it!

Then the following week I was sent for a CT of the chest and I asked the consultant would I need to have the dye injected and he said no, I said that's a relief because I think I had a reaction to it last time.
When i was getting changed for the chest scan I had to fill in a form and list any allergies and it specifically said "are you allergic to contrast die" so I put yes - unable to breathe last time.
They took the form, read it, and then immediately tried to cannulate me - so I said hang on a minute, i was told I won't be having the dye this time, they said well yes you do need it.
I said last time I was not able to breathe and it was quite frightening so I think I might be allergic to it. The nurse said well no thats not what we would class as an allergy, an allergy would be vomiting, hives, rashes or not being able to breathe for a prolonged period of time afterwards.
I said well I couldn't breathe and therefore I really don't want to have it, it concerned me.
They said well there's no point you having this scan if you don't have it. THe nurse said that the amount would be slightly less that time and it was probably the warmth of the contrast and anxiety which made me unable to breathe.

I pulled up my big girl pants and agreed. Surely enough about a minute after the dye went in I felt the tight feeling again and although it wasn;t as bad as the time before, i still had a very tight chest and was on the verge of asking them to help me.
In all fairness the nurse came in and asked how i was immediately after they finished the scan and i said that this time it was better but i still had the tight chest and struggled to breathe a bit, but then i started shaking, as if i was stood outside in the winter with no clothes on but it was quite warm in the room. The shaking went on for about 10 minutes and then finally wore off. I got up and got changed but as i was walkign out of the building i went really dizzy and had to sit in the car for 15 minutes before being able to drive off.

So clearly I am having some kind of reaction to this dye, even though it's not "as expected" but I have been urged to have a CT colonoscopy which I have put off but I know I need to have it!
What happens if i refuse to have the dye again? Will the radiographer refuse to scan me? Will they still be able to read it clearly enough without the dye being injected? Strangely enough when I had to drink it last time i was fine, no side effects, just seems to be when they inject it. I have to drink it again this time so I'm wondering will that be enough?
I think with the tight chest and the fact that they are inflating me with air I will really struggle to breathe and it is all frightening me.

What happens when people are severely allergic to it, surely they don't then have to have it again?

I'm paying for it privately so I'm not messing anyone around that is on the waiting list on the NHS

Hi op are you sure they use dye for the CT colon? I thought they inflated your bowel so it could be clearly seen. Have you been told it's dye? You clearly need this test so would be wise checking.

You need to have it so check with them if it does involve dye (I don’t recall any).

But anyway, do you think you might have just had a mini panic attack. I have had dye as part of a scan once and it is a v weird sensation.

They usually give you a mild sedative with a colonoscopy which might help

Ct colonography doesn't use dye. It uses air only.

Also I'm not dismissing what you are saying but I agree with the nurse that it does sound like a panic attack rather than an allergic reaction. If you can't breath due to anaphylaxis you wouldn't have been able to just shake it off, it's much more serious than that.

If a person has a genuine serious allergy, they may be prescribed pre medication to reduce the risk of a reaction, to take several hours before. They may be sent for a different type of test, eg, ultrasound or vq scan, depending on what they are looking for. Or they may have the scan without contrast, but in some cases this would make the scan pointless. The contrast isn't just a nice to have, it's essential in some cases or the scan won't answer the clinical question.

I say this nicely to answer your question, I hope it doesn't sound rude. I know it can be scary to have an medical procedure.

I'm surprised they didn't offer you anti histamines.

I reacted to a T dye - I went bright red for about a week. I phoned the department and they said take antihistamines and which ones to buy.

I've had a colonoscopy and that didn't involve dye because they actually put a camera up. If they don't offer a sedative tell them you want one.

Do you have an allergy to seafood?

If they are using dye then there isn't just the one dye in use, they should be able to change it.

If I were in your position I would want to have an appointment with the Dr who will perform the procedure to talk through exactly what is going to happen and have it added to your notes.

Sometimes private hospital notes and sparse, so you want this to be added.

I'm assuming you also have an NHS GP so you want it to be added to your notes.

It may well be a panic attack but anyone can develop a reaction to anything.

This reaction is normal and typical. I am surprised that you were not told beforehand. That must have been scary .I have had it more than once but everytime it was explained to me. Was told that you would experience a warm adreline type rush to the chest and feel like you needed to pee. I did feel a bit shaky afterwards and on one occasion did vomit . But it was a necessary procedure.
I don't think dye is used in a colonscopy as it is a camera job rather than X Ray. If you want to be sedated , you need someone with you afterwards.

A CT colonography doesn't use a camera or dye. Instead of the camera going up there (as for a colonoscopy), air is pumped in to the rectum to distend the bowel, so polyps aren't hidden in the normal folds of the bowel. Then a CT is taken. It's sort of like a virtual colonoscopy.

OP, you really need to talk to the department doing the scan. There is some slightly confusing info in the posts above and you’d be better off taking advice from the people who’d be doing the scan.

Yes I think people are confusing what I'm having with a regular colonoscopy.

TO clarify I am not having a regular colonoscopy with a camera or sedative and it won't be performed by a doctor.

I am having a CT scan of the colon but they inflate your colon with air AND they inject a dye (i have read and re-read the leaflet several times to make sure)
They also inject buscopan to relax your bowel a little but that's not what's bothering me its the dye.

www.cancerresearchuk.org/about-cancer/cancer-in-general/tests/ct-colonography

This explains it a bit better "Midway through your scan you also have an injection of contrast medium"

so yeah I'll definitely be having the dye