Alternative to iodine contrast for CT colonograghy ? - LUPUS UK

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Alternative to iodine contrast for CT colonograghy ?

Foss
Foss

Hi all, I urgently need to have a scan of abdomen and pelvic area, but I’m allergic to the iodine contrast dye that they inject.

Has anyone had a similar problem and if so how did you overcome it. I can’t believe I’m the only one with this problem, but the medics seem unable to come up with a solution.

Thanks

Foss

16 Replies
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Hi

I have the same problem and I needed an urgent scan but I had to wait a day and they ordered this other dye that don't contain iodine. Ask to see a different doctor as all they got to do is look it up hope this helps

Good luck

Amanda

Foss
Foss in reply to najjj01

Hi najjj01, thanks for that. I have been told that there are alternatives, but nobody seems to do anything.

Thanks again

Foss

I had to get another type of dye also because of iodine allergy. I was given benadryl once before surgery when they had to use a small amount of iodine. I did ok with it.

Thanks ac489, I’ve heard about the use of anti-histamines, glad to know you were ok with it. Thank you for writing.

Foss

Good question foss!

I’ve been feeling concerned about this myself too...although every time i’ve had a CT or MRI the radiology team has chickened out of even trying me on any kind of contrast...which leaves me wondering how much more limited the reports have always actually been

for what it’s worth, i found the info in this link quite useful and am going to discuss it with my consultants soon at gastroenterology & immunology clinics:

insideradiology.com.au/cont...

Hope you’ll let us know how you get on

🍀😘🍀😘🍀 coco

Foss
Foss in reply to Barnclown

Thanks Coco that’s really helpful.

I have come across Gadolinium before and wondered why it’s not been suggested ! My problem is adverse reaction and severe nausea and vomiting. The surgeon was supposed to be discussing the way forward with a consultant radiologist, but that evaporated into the ether and she now tells me that she’ll review my need for a scan when next she sees me ( that was to be next week, it’s now early June )

For me this calls into question her clinical judgment as she has diagnosed me with an intussuception and a palpable mass in right iliac fossa and originally arranged a scan ‘ PDQ ‘, unfortunately the prep made me so ill I couldn’t have it done.

Sorry to ramble on, but I’m sure you’ll understand the problems and the frustration, not to mention worry.

I have read that steroids can be given with the iodine to counteract problems. I just wish someone would do something.

Many thanks for your response, I’ll let you know the eventual outcome, if there ever is one!

Foss 🙀🙀

P.S. wonderful photography by the way.

Barnclown
Barnclown in reply to Foss

That’s A LOT 🙁...it’s good you’re closer to convincing diagnosis, but you’re still being messed about really, yes?

Hmmmmm...i forget:

did they attempt a standard colonoscopy but fail?

What made you so ill the scan had to be abandoned: eg did they give contrast you hyperreacted to?

Are you able to eat solid food?

Aplogies for all these ?s, but looks as if an abdo scan is due for me so you’ve posted at the perfect mo

Take care dear foss 💐💐💐💐 😘🍀😘🍀

Foss
Foss in reply to Barnclown

Hi, yes colonoscopy done, sigmoidoscopy done.

It was the prep for the colonography that made me so ill. I’m now told that a milder prep can be given, so if you are prone to same sort of problems I’d ask what they intend giving you.

Inspite of my notes being labelled in red, ‘ Allergic to Iodine ‘, the radiologist seemed unaware of the problem when I went to collect the prep. After I’d explained the problem he gave me Picolax instead of the iodine drink to prepare the bowel and said they could use another contrast dye for the scan. I foolishly didn’t ask what?

I took the prep and was ill, but got to the hospital. Unfortunately the nausea and vomiting continued for so long they couldn’t go ahead with scan.

I can eat solid food as long as I’m very careful, but much happier with soup etc.

Good luck with yours and let us know how you are coping. I think this is a post code lottery situation.

Thanks Coco 🐿

Barnclown
Barnclown in reply to Foss

Thanks foss: EVERY SINGLE ONE of these 🌟🌟🌟🌟🌟 details re your experiences is vvvvvv helpful 👍👍👍👍.

My focus at the mo is managing the increased degree of persistent abdo/viscera pain caused by my hyperreaction to my lupus rheumatology’ clinic chief’s 9 March barium swallow. After a lifetime of managing my mouth to a**s manifestations mainly via exclusion diet + more recently my multidiscipline teams’s prescription immunosuppression + antibiotics + insoluble nonfermentable bulking agent, the solid/liquid food i can take by mouth is so limited now that i can’t help wanting to try going over to liquid feeding....so am seeing my clever lovely NHS Gastro Specialist Dietician about this.

Meanwhile i see the NHS gastroenterologist again mid may. If he doesn’t impress me, my Crohns-patient husband wants us to see my colorectal chief surgeon again privately to discuss further imaging etc....hence my interest re contrast substances (like the best colorectal consultants, he is as able a physician as surgeon...and so far his advice has helped more than any of the gastro consultants i’ve seen)

Good luck dear foss 😘🍀😘🍀😘🍀

Foss
Foss in reply to Barnclown

Ooh the reaction to barium swallow sounds nasty. I love your description of mouth to a***s manifestations. It really just about sums it up. Exclusion diets are a real pain in that last part of the anatomy and I’ve had my fill of them, no pun intended.

Good luck with further imaging. If/when I get something done and if I’m spared I’ll let you know what contrast dye was used etc!

Good luck and thanks for you help Coco.

Foss

Barnclown
Barnclown in reply to Foss

THANKS 👍👍👍👍😘🍀

Hi, I am severely allergic to iodine having had an anaphylactic reaction needing ventilation etc. Not something I wish to repeat ever. I have had an abdominal CT without contrast but the radiologist came back saying it was too difficult to interpret without contrast and minimal abdominal fat so suggested a MRI. This was done injecting Gadolium..however that is spelt... and I was fine apart from difficulties getting it into a vein and pain of it going in to the surrounding tissues. The gadolium doesn't contain iodine. Surprised they don't just do the MRI, I had a mass too and all these scans were done within 3 weeks of it being noted

Foss
Foss in reply to GlasgowHen

Thanks rolybear, yes have heard of gadolinium, I’m as surprised as you that they haven’t just got on with it. My confidence in the system in this area is shot.

I hope you had a good outcome ?

Foss

Not sure where you are but could you go to your gp and express your concern? Or ring the drs secretary and ask what the plan is? If you have a mass and they don't know what it is they should be treating it along a cancer pathway which means rapid access to scans etc. I wouldn't leave it,start causing a bit of a fuss if you feel up to it

I had the mass removed and a lot of fluid,I was worried as they thought it looked malignant but thankfully wasn't.

Foss
Foss in reply to GlasgowHen

I’m in Sussex and seeing my GP is my next move. I’m writing out a time line of events because the whole experience is unbelievable.

When I was first seen by surgeon in November 2017 and told about intussuception and mass I did receive appointments for a scan within two weeks. Since I was unable to have the scan things have just gone haywire.

You sensibly suggest ringing the surgeon’s sec. I’ve tried both NHS and private sec which culminated in me making an appointment privately with surgeon to discuss my options for surgery without benefit of a scan. After an hours wait I was called in to see her to be told that they’d been unable to trace my scan results... when I explained that I’d not had one and that was the reason for the appointment she did have the grace to apologise.

I left that appointment with her promise that she would speak with a consultant radiologist for advice about alternative contrast dyes. She confirmed this in writing.

Three weeks later and still nothing from hospital, her NHS sec tells me that she will see me back in clinic in April to assess the continuing need for a scan. The same day I receive three letters from NHS cancelling the April appt, giving me an appt. for June and another, cancelling that one and giving me another for the following week.

If this ridiculous saga hadn’t happened to me I would find it hard to believe. As you say, I think my only option is to let my GP know what’s happened and ask for a referral elsewhere. I have no confidence in this women at all and think I’d be better off elsewhere. I think it’s time to start jumping up and down.

I’m sorry to ramble on and thank you for your help.

I’m also very glad that your mass was not malignant and hope that you are now well.

Foss

Barnclown
Barnclown in reply to Foss

What a shambles! I’d be thinking exactly the same way, foss! 👍👍👍👍

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