Colonoscopy advice please

[lizzie47]

I am due for a Colonoscopy on Wednesday. On last Saturday I had an MRI scan on my spine and pelvis which caused me dreadful stress,I am a wimp,since then I feel I am having a flare so increased my Pred from 10mg to 13mg last night and the same tonight,I have GCA,for 2 years.Please would any of you kind and helpful people please advise me whether I am safe to go ahead with the Colonscopy on Wednesday if indeed I am having a flare.Thank you so much for taking the time to read my post. Lizzie x

[SheffieldJane]

Has your increase in dose helped your flare symptoms? If so.........

I would get it out of the way with. My husband was offered diazepam, but declined. I think I would take it, so that I could easily slip into a meditative state and not be bothered what they are doing. As women invasive examinations are something we get kind of accustomed too. What was it about the spinal/ pelvic scan that made you feel so stressed? Was it the claustrophobia of the tube. My OH was more worried about that and took prescribed Valium. He was fine with that. The trick is to keep your eyes closed and go to your happy place clutching the alarm button.

[CT-5012 in reply to SheffieldJane]

Been there, I would take any help available. Not an easy examination but bearable, no one offered me anything. All good wishes.

[lizzie47 in reply to CT-5012]

Thank you,yes I am going take anything that is offered.Lizzie

[lizzie47 in reply to SheffieldJane]

Thank you Jane for your reply.Yes the increase has helped,headache seems to have gone,neck still feels a little tight and not as bleary eyes.Ithink I have been on the edge of a flare for some time and I guess the MRI perhaps tipped the balance.I get a bit panicky with anything to do with my heade as my mother had a brain aneurism many years ago,30 years,so being diagnosed with GCA was not good.The MRI scan was called an open scanner,well I think there might have been a hairs on top of my head that weren't in the scanner,you see what a wimp I am!! Yes I will go for sedation! Not going to be easy laying down again on a hard bed as I have 4 fractures! Thank you Jane.Lizzie x

[Hidden in reply to lizzie47]

Hi Lizzie

Hope all goes well for tomorrow 🍀 it’s not much fun, they asked me if l’d like sedation? Well, YES! And if I’d like to watch the Screen, NO Thanks! It was over pretty quickly, l probably drifted off 💤

Let us know how it goes & if your flare is settling 🌸

[lizzie47 in reply to Hidden]

Thank you for your advice and good wishes.Lizzie x

[Longtimer in reply to lizzie47]

Make sure you tell them of your problems.....especially fractures, they could then make you more comfortable. I have them every 5 years because of family history....good luck......

[lizzie47 in reply to Longtimer]

Thank you for your advice,yes I am presuming the bed isn't going to be very comfortable and hoping I am going to be away with the fairies! Thank you Lizzie x

[SheffieldJane in reply to lizzie47]

No wonder this is all so frightening for you. Your feelings about the scanner are very usual though. I’ve just remembered, they played me some meditation music at my request. That helps because the machine makes disconcerting clunks. I’d just get nice and relaxed and they’d ask me if I was ok and I’d have to start all over again.

The bed for the colonoscopy will be less hard than the scanner one. We’ll be thinking of you.

[Telian]

I’ve had annual colonoscopies and usually am given a top-up during the procedure with no problems - was on 6mg and reducing each year. Then last year - now on 3mg - was told I didn’t need a top-up - I had a flare.

I would say you are safe to go ahead - just let the consultant know your dose and when you increased last. Think your dose is enough to cover you. You will have completed a pre-assessment and that tells them your current condition.

Stress doesn’t help though and you need to try and destress before next week.

[lizzie47 in reply to Telian]

Thank you for your reply.Yes I will go for sedation,I have a form to fill in to take with me re medication so will make sure they know my increased dose.I have always been a stressed soul and this disease doesn't help with all the add ons you get.Thank you Telian x

[Telian in reply to lizzie47]

You’re doing well - the dreaded stress levels increase with age alone so double whammy for us! The sedation sounds a good decision. Then afterwards do you look back and say why did I put myself through it like that? I used to but not anymore - it is what it is.

It will soon be over Lizzie. xxxx

[lizzie47 in reply to Telian]

Good advice,there always seems to be something to worry about with this horrible disease.Thank you xxx

[Lyndab62]

Hi, I had an endoscopy last year and was very anxious beforehand. I opted for a sedative and was out like a light for the few minutes it took to do it. I was having a cuppa a short time later and felt fine by the afternoon. I took my pred when I came round so my dose that day was 2 or 3 hours later than usual. Could you have a sedative? I would think it will be ok to go ahead, despite a flare, but wait for the experts to answer. Hope you're ok, the worry before is often worse than the reality

[Telian in reply to Lyndab62]

I don't opt for the sedative as I care for my husband but they knocked me out part way through because found 7 polyps. I was okay afterwards, if they hadn't told me I wouldn't have known.

[PMRpro Ambassador in reply to Telian]

Don't even bother with sedation for polyps here - OH had several done recently. Also having bleeding cauterised - says there is a sort of ping sensation for a second or two and that's it. I know - we're weird ...

[Telian in reply to Telian]

Seems they make an executive decision, I recall being in a lot of pain then nothing. Didn't realise I'd been to sleep - 7 is the most removed in one go they find 2s and 1s every time - the blighters are always there - do steroids cause them?

[PMRpro Ambassador in reply to Telian]

No, they can appear without being on pred. My MIL had some - never been on pred in her life. OH has a few, had steroids a few times, not like us.

[lizzie47 in reply to Lyndab62]

Thank you for your reply.Yes I an have sedation and I will go for that.I don't think I would be so worried had I not started with what I perceive to be a flare,perhaps I have been lucky not to have had a flare before having started on 60mg Pred 2 years ago.Thank you.Lizzie x

[Lyndab62 in reply to lizzie47]

I'm in the middle of a massive flare, and I've upped my pred by 5 mg. Just waiting it out, but like you I feel anxious and want to get back on track . I don't think you taking more pred at this time will affect your procedure. It might help if anything. Just mention it when you go. I'm also 2 years into this horrible illness!

[lizzie47 in reply to Lyndab62]

Poor you,its so debilitating.Then the question is reducing again to get back to the dose you were on before,have been reading up on that.As I started on 60mg and now have Osteoporosis,steroid induced,and 4 fractures its all such a balancing act,all I know is I want to be off the Pred as everyone does on this site.Thank you and I hope the flare quietens down.Lizzie x

[PMRpro Ambassador in reply to lizzie47]

If you raises the dose for just a few days to cover something like this, you can drop straight back to the previous dose without problems, no taper required in that case.

[lizzie47 in reply to PMRpro]

Thank you for your reply. Did you mean even though I increased my pred on Sat after my MRI when I felt I was starting with a flare it would be ok to go straight back down to 10mg from 13mg after my Colonoscopy tomorrow please.Thank you for your help.Lizzie x

[PMRpro Ambassador in reply to lizzie47]

If it was just the stress doing it, it is safe to do that yes. You haven't been on the higher dose long enough to need to taper.

[SheffieldJane in reply to lizzie47]

I think stress makes us feel ill almost immediately, it may not turn out to be a flare. I hope not!

[Angiejnz]

I told my doctor they could only do the procedure if I wasn't there.... so got knocked out for it😂 Good luck and get it out of the way x

[Patience47 in reply to Angiejnz]

Same here 😐

[Telian in reply to Angiejnz]

They had an extra long hose then!

[lizzie47 in reply to Angiejnz]

Thank you Angie,am going to take the sedation too.Lizzie x

[S4ndy]

I am having Colonoscopy today, sitting waiting in hospital now. I am having a sedative and told the consultant I don't want to be awake. I had an endoscopy before xmas and I was given a sedative for that, I don't remember any of it. Woke up in recovery

I get very anxious about medical stuff but haven't had to increase my pred.

I had a spinal MRI, the scanner was so small that I panicked. Had another MRI on my small intestine, scanner was much bigger and was absolutely fine.

So I hope it goes OK for you on weds and that you don't go into full a flare xxx

[SheffieldJane in reply to S4ndy]

Thinking of you sweetheart and Lizzie too. We’ll be so brave when this is all over!

[Telian in reply to S4ndy]

Hope all goes well S4ndy.

[Hidden in reply to S4ndy]

Best of Luck for today 🍀 Hope all goes well & results are good.

MrsN

[lizzie47 in reply to S4ndy]

Hello Sandy.I guess you are all done and dusted now and hope it all went well.What a relief! I suppose we all get a bit anxious but some people seem to take everything in their stride,I wish I was one of those but I am not sadly.Perhaps up to 2 years ago I had led a fairly illness free life for 69 years and then wham I have GCA,just when I had retired looking forward to a new life! I hope you are resting now with your cup of tea,look after your self and thank you Lizzie x

[SnazzyD]

Hello, I don’t know about the flare bit but I’d say my personal comparison of MRI with colonoscopy is the first can be (but not always) terrifying and the other unpleasant. During the colonoscopy you can talk to people who are with you too.

[AliDeJ]

Dear Lizzie,

You need the colonoscopy, it is so important. Just think BEYOND the procedure to the moment it is all over. How reassuring to know soon that all is well, or to have a problem nipped in the bud, if there is one. I found the preparation for it rather nasty...drinking all that gloop to cleanse my insides, but the actual procedure went very smoothly and didn't hurt at all. Time must pass, look beyond the event to a clear blue horizon after this transient wave. Im sure they will treat you kindly. X

[lizzie47 in reply to AliDeJ]

Thank you AliDej,I have started the preparation now and have got mty tub of Vaseline.Am going to look at the clear blue horizon as you suggested.Lizzie x

[S4ndy]

Lizzie just got back from having Colonoscopy. Sitting up eating toast and marmalade. I don't remember much about it. Think.the worst bit was yesterday's "prep".

Just get over the embarrassment and having to " fart" a lot!

Just waiting for consultant for results now.

I can safely say that you don't have anything to fear. Hope it goes well for you tomorrow xxx

[lizzie47 in reply to S4ndy]

You must be so pleased its all over now,started taking the preparation so waiting !! Hope the results were ok for you.Very encouraging that most people don't remember much about the procedure if anything.Thank you Lizzie x

[1602]

I have had several colonoscopies - one since PMR/GCA diagnosis. Try and relax TAKE THE OPTION OF THE MILD SEDATIVE IT WORKS and makes it really easy. Take care. deep breaths and lots of love and prayers to you, xxx

[lizzie47 in reply to 1602]

Yes I am going to take the sedative as most people seem to do.Relaxing doesn't come easy to me but I will try the deep breathing as you suggest.Thank you so much Lizzie xx

[PMRpro Ambassador]

It really shouldn't make any difference at all - except you may feel a bit more stressed. In which case discuss it with the doctor/nurse doing it as you can have sedation. It does help them if you can react to them though.

Where I live we aren't usually given anything - the doctor chats to you all the way through and explains what he is doing. Both I and OH have had the same one and we both think he is brilliant! Because we are like that, we also like the fact he makes sure you can see the screen if you want to and asks repeatedly if everything is OK. But if you can't bear it - even here they will provide sedation and pain relief. They aren't horrible people - and prefer it if you are up-front with them about being nervous.

And the prep is by FAR the worst bit...

[lizzie47 in reply to PMRpro]

Thank you PMRpro for your advice it was much appreciated.I had the sedation but I have to say I found it quite painful unlike the other kind people who answered my post who didn't feel a thing.I did mention it to the staff nurse afterwards who said every Dr is different with the procedure and the amount of air they use,at least I think that what he said.But there we are its over now but it wasn't a pleasant experience.I have reduced down to 101/2 mg Pred in the hope what I believed to be possibly a flare was the stress of the MRI and Colonoscopy within a few days of each other.Thank you again Lizzie x

[PMRpro Ambassador in reply to lizzie47]

The gas they use can be quite painful for a while afterwards too - and yes, it does depend on the doctor. Our guy is super - probably because he knows the patient is fully awake and will tell him if it hurts!! My daughter tells me that they have found that the type of gas they use makes a difference but I can't remember offhand which they have found is less uncomfortable. But it's done and dusted now!

[Hidden]

I had colonoscopy and endoscopy same day,i took sedation and was fine.Hope all goes well.xx

[lizzie47 in reply to Hidden]

Thank you for your reply.How very brave you must be,the one procedure stressed me out big time! Thank you Lizzie x

[Hidden in reply to lizzie47]

The worst bit for me was taking the med to clean you out,it was dreadful horrible stuff.But needed to have it done and thankfully all was well.xx

[AndrewT]

Dear lizzie47,

Some people here have told you that Colonoscopies are 'Difficult'....No their not! I had one, a few years ago now, so let me explain- from the Patients point of view, what Happens.

You are given a Laxative to drink, normally Pico lax, and have to have your 'Last Meal' for that day, around Five (I think). This Laxative tastes Awful but adding Juice/ Squash helps with the Taste. This has to be Drunk regularly, over the course of the evening....And Will Make You SH-T! (Do warm 'Everyone' about this. In my case, and probably ONLY my case, I had a Mother who Kept Asking "Are You Alright", every Single Time I had had to Poo!) In the Morning you attend the Hospital, as I recall without Breakfast.

Prior to entering the Examination Room, you have to change into a Hospital Gown, this gives access to your 'Behind'. After, a little 'Prepping', of your A**e hole. A Tube is then pushed into your Bottom, this Tube Contains a Camera. Using the Camera, as a guide, the Surgeon examines the Inside, of your Colon. As the Camera passes a Little 'Higher' you May get a little uncomfortable and perhaps feel, a bit of, Griping. To combat this AIR is introduced into you....which has to Come out afterwards! As I recall the Test did not take, too long, and you are then left on your side, for a while, before being given Tea and Biscuits (trust me, the NICEST biscuits you have ever had). You might, to begin with, be embarrassed about your 'Farting' (the air coming back out), this won't last....When you find out everyone else is Doing it too!

So yes maybe a 'Tad' uncomfortable, for a few minutes, but NOTHING to worry about- at all. (If any 'Polyps'/ Abnormalities , are 'Found' they can be Removed, during the Procedure.) Well over Half, of all Colonoscopies, reveal No Problem- the Consultant himself, told me that. Of those that do Show Something, 'Very few' are Dangerous.

So there, really is, nothing to 'Worry' about Lizzie. Forget 'Scaring the Shit', out of you, because there won't be any left! (Sorry I just 'Had' to)

Don't worry, you will be Fine.

AndrewT