Severely, severely scared about standard procedure

[whimperinginacorner]

Just putting this out there because I am so scared I frankly don't know what to do with myself (honestly not exaggerating) and need help/collective wisdom of Mumsnet/coping strategies.

I know I need a large kick up the arse but I have delayed having an endoscopy/colonoscopy since October 2010 out of extreme fear.

Since then the symptoms have got worse (I have many of the symptoms of cancer of the oesophagus and am convinced I have it. My father died of it. My cousin is currently dying of it . And in addition to nausea, regurgitation/acid reflux, I can now feel something at the back of my throat and a fortnight ago, spotted a creamy white patch or lump behind my right tonsil.)

So I have made another appointment (in 10 days time) to discuss the above and already have a space booked for the endoscopy/colonoscopy at the beginning of December, but despite the fact that the fear of not knowing is almost approaching the same level of fear about the procedure, I honestly don't know if I can go ahead with the latter.

If this was the history of someone else I would be screaming at them "of course you must go and have it done you nutter" but I am so terrified at the thought of having a tube put down my throat that I am currently a gibbering wreck; I don't seem to be able to focus on anything else and am almost paralysed with fear - can't function normally. Just making the appointments on the phone caused extreme nausea, shaking, sweating. How on earth am I going to get through the actual thing?

Hello. Sorry - only just spotted these latest replies.

RoxyRobin Relieved to know I won't lose my nagging capabilities and particularly good to know you were completely unaware of what was going on.

Lalabaloo I know I am going to be terrified the night before!! V. brave of you to opt for no sedation! Reassured that all went well though.

Badvocsanta particularly good to know about the custard creams

MrsBugsywugsy[stage whisper] don't tell anyone but I'm having a colonoscopy at same time - involving tube at both ends [quivers and reaches for valium]

Thanks everyone. It really is reassuring to know you all survived OK! I know I will be a quivering wreck as the date approaches, but for the moment , I feel ok about the prospect!! [Well, I'm dreading having to drink hideous "heavy" white drink on the morning of the procedures but I'll have to cross that bridge when I get to it. Also have to eat "white food" eg plain rice etc from two days before apparently. Will know more details after consultation appt next wk]

Thanks again everyone!

aah! now you're talking colonoscopies too! yep, you've guessed it, I've had one as well . I think it was when I was having endoscopy no 2.

The main advice I would give you is that the preparation is worse than the actual procedure! Each hospital does it differently but I was sent a sachet of laxative through the post which I had to start taking 2 days before. I had to eat bland foods that day and then the next day (ie 24 hours before the procedure) I took another dose and was restricted to clear liquids only.

this is TMI coming up but I thinks it's important to know how you can tell that its worked properly! Basically you bowel will be completely empty when it looks like you're passing clear/pale straw coloured liquid. ie its just like doing a wee from your bottom! Your bum will get very sore so a lot of people advise wiping with baby wipes as they are softer than toilet paper.

It may be a bit uncomfortable during the procedure but you should be sedated enough that whilst you can hear them giving you instructions you shouldn't be too aware of what's going on. I of course was wide awake and lay and watched it all happening on the TV monitor! Wierd!

Afterwards though, be aware that you will have the biggest attack of wind you've ever had! thanks to pumping air inside the bowel during the procedure you will have a lot to get rid of. They do try and take out as much as they can but there's plenty left . The drs and nurses are completely used to patients trumping away so try not to get too embarrassed, easier said than done I know.

Anyway, I'm counting down the days til I go in. In a wierd way I'm looking forward to having some time to myself to read a magazine before and after the procedure. My DD has a chronic health condition and DH is currently moaning and groaning around the house with a cold so for once the appointment will be all about ME! (I'm still dreading the procedure itself though)

I agree with mintyneb. The effects of the laxative are far more inconvenient than the actual procedure itself, which takes very little time at all.

I had to drink 4 litres of Clean Prep, which was foul. Once it starts to work take a good book with you and prepare to sit on the loo for several hours. I hope you have more than one loo in your house.

Hello Mintyneb and Bunbaker Thanks for your posts (I think !!)

Minty Sorry to hear about your dd's chronic health condition and hope your dh is feeling a bit better today.

Had enema prior to caesarean so am familiar with bowel clearing and wind horrors. Am a bit scared of all that though because of drive to clinic! And just dread the indignity of it all really.

Wishing you all the best for the 3rd - will be with you in spirit!!

Bunbaker fortunately have lots of loos, thank you for the warning!! Dh had a colonoscopy a while back and he said that the drinking of prep liquid beforehand was the worst bit as it was so "heavy" but that the procedure itself wasn't too bad.

Dh came back with a full set of colour pictures that were taken by the scope as it proceeded up his inards, I think it started in his upper colon and worked down to his er, anus. Unbeknown to us, dd got hold of it some time later and was showing it to everyone who visited the house. (I am not kidding, we found her showing it to our neighbour who has never looked at dh in quite the same way ever again )

ah, it sounds like you are a household well used to bowel examinations! At least you have a pretty good idea of what to expect .

that's funny about your DHs bowel photos! Not something you would particularly want to share with a neighbour. Still, I have to say I found it quite fascinating watching my insides whilst I was in my drug induced haze

will hold your hand if you hold mine!!!!!!!! Waiting for an emergency app for tube down and tube up! Ffs cant even cope when they put the thing in to take a tooth xray!!!
Know have to have it done as blood tests came back crap oh dear!
Also finding it hard to find someone to come with me re sedation....lie maybe???
Yes its scarey but we have to have it done and sure sedation will work fine for us.
Going to brave it mon morn to see what apps. they have though would rather leave it and see....pathetic am I??!!
Lets go for it and get our problems sorted for once and get the treatment needed.
Feel free topm, not mumsnet but hugs x

oh god just read a poster said valium is the sedation....take lots of this anyway and its lost it effect....panic now.......

My friend is a psychologist in a hospital and she deal, with people who have severe fears that mean they put off or don't have treatment or make themselves ill with worry over it. Can you check if anything similar at your hospital?

Whimper, good luck with your consultation tomorrow. You'll be fine. Let us know how it all goes.

Hello again.

Jalopy just wanted to say "thank you" enormously for remembering the day and for your good wishes. It was really kind of you. Sorry not to get back to you before now but I started whimpering and getting scared on Monday evening, even though it was only an appt in advance of the procedure. I did see your message beforehand though and it really helped

It went OK thank you, apart from the fact that there was a massive strike here (will probably out myself saying this) involving tractors and we (and the receptionist and other patients and staff) were horribly late and so we only managed a five min chat and have to go for another appointment on 30th!! Added to that, I was so stressed by appointment + strike situation that my languages disappeared and I wasn't able to establish whether this means the procedure will be delayed too. Must ring them this morning and find out now I am calm again.

I must admit though - it took me all my courage to just go and discuss it. I was rather taken aback by how scared I was. Heaven knows whether I will be able to make it to the actual thing.

givemeaclue thanks for the suggestion. Really great to hear that those services exist where you are!! Sadly - I am having the procedure in a tiny day clinic (fairly standard here) but have sought out a CD by Dr Claire Weekes called "Pass Through Panic" and am trying to listen to it as often as poss.

Dopamax sorry to get back to you only now!! Definitely up for a bit of mutual hand-holding. Have you had your procedure yet or do you have an appt? Hope you managed to find someone to hold your hand to. Let us know!! BTW I'm sure they will have varying degrees of sedation available (hope so anyway!!)

Minty [gulp] didn't realise that you are aware enough to watch the screen while it is going on!!! Dh didn't mention that (he's only had the one examination btw and that was a few yrs ago now).

Thanks again everyone. Starting to feel a bit quivery again though now ...

Have had two endoscopies and one colonoscopy. Was terrified. Did have sedation but with me it never works till 30 mins minimum later so I fell asleep after the procedure both times.

As others have said, the prep for the colonoscopy is the worst thing about it really. I didn't feel a thing during the procedure - was wide awake and watching on the screen! The endoscopy is a very strange sensation but perfectly fine - doesn't hurt just feels a bit strange - I was aware of everything as I didn't feel drowsy until they finished.

If you can afford it could you have a hypnotherapy session before? It would really help to manage your anxiety.

I would make sure the consultant is fully aware of your fears and knows not to start until sedation has kicked in. As I say, mine was perfectly fine effectively without sedation but since you are v. worried they should do a belt and braces thing. Good luck!

I have had conscious sedation twice for dental work (would have happily sat there for months with my face swelling up like a painful cabbage otherwise to avoid the procedure.) it was a shot in the arm rather than a tablet. I can't remember a single thing about either procedure.

However I do remember the dentist saying "okay, are you happy for us to make a start?" and me replying "Mmmmmmm, ooohhhh, yessssss" in a frankly suggestive manner. That was some good stuff :)

Good luck!

Whimper, well done for getting to the first appointment. Even through all that adversity, you managed the first hurdle.

I'm sure the next appointment on the 30th will be fine. Don't let yourself panic about it. Remind yourself that you were brave enough to turn up at the first consultation. Perhaps jot a few questions down on a piece of paper just in case your mind goes blank on the day.

You're nearly there! Remember, the anxiety is far, far worse than the reality.

Hello! Thanks again for responses. Sorry - only looking on here intermittently atm!

Marshmallow gulp - that's a bit scary about sedation not working immediately but good to know that you didn't feel anything during the procedures. I don't think hypnotherapy is widely practiced here but don't worry - entire clinic will be aware of my fears by now I should think!

Arf at AlreadyScone and suggestive responses!! I am hoping the sedation will be delivered by injection as I am not remotely scared of those thank heavens. I'm exactly the same re: the dentist by the way - avoidance being my watch word.

Jalopy thank you again for the reassurance. I actually managed to forget my list last time so hopefully won't make that mistake again. Will report back and thanks again!

Whimper, hope your appt went ok today.

Whimper
Been lurking until you have the gastro endoscopy, as have a funny story to tell. Not had a colonoscopy.

Hope all goes well, and awaiting your experiences.

Just a couple of hours til I'm due at hospital for my appt. Nerves have definitely kicked in!!

Not sure what I'm scared about most, the actual procedure, what they might find, hearing what I must have done at the last one for them to want to completely knock me out this time .....!

I know I will be fine but I can't help worrying. It's not helped by the fact I've got a job interview tomorrow!

Whimper, I hope you're still holding up ok for weds

Had my gastroscopy at 2pm last Tuesday. Had been intending to do without sedation, but on the day I was told they might want to perform a certain procedure while they were in there which would prolong the process, and that induced me to go for sedation after all. In the event they didn't need to do anything but have a look, so I missed my chance of looking tough for nothing.

Was slightly embarrassed - I'd last eaten at 9am, when I'd had an enormous vat of porridge to sustain me throughout the day. A mistake - it decided to just sit in my small intestine and expand instead of moving on, so I was crammed with poo! The doctor remarked, "I got a good view of your breakfast." Rather him than me, I suppose.

This came on top of my ultrasound experience of a few weeks ago. I'd just come back from holiday and as ever after a trip I was constipated. The day before the scan I ate lots of porridge (!) and figs and apricots - but none of it emerged at the other end. Honestly, I felt as if I was stuffed to the armpits with shit. I looked six months gone. The radiographer couldn't get a clear picture because of all the air that was trapped in the mix and had to fetch the consultant radiologist no less to take over. Was mortified - he was really gorgeous in a greying-at-the-temples sort of way. He got me into an undignified position so he could come at things from a different angle; I was praying I wouldn't emit an explosive fart with all the effort.

DH says I will become known as 'the Poo Woman' at the hospital.

I hope you're bearing up, Whimper. I was fine (although I know you've got the other end to think about, too). I soon shook off the sedation and was making DH's dinner four hours later . I didn't fancy any - I was still working on the porridge!

And good luck to you as well, mintyneb.

Hello everyone!!

Apologies again for only posting on here intermittently.

Particular apologies to you Mintyneb as I managed to forget that today was the 3rd - had intended to wish you well beforehand. Hope it is/has gone well today and that you are OK - and that it wasn't too much of an ordeal - and please come back and tell us how you got on. Hope your dh is sufficiently recovered to give you some support too x

Thank you also to Jalopy and Diggerd for all the support and sorry to get back to you so late.

My progress so far has been a bit disastrous as everything has been delayed (a) owing to illness and (b) turning up to second appointment (the one that had been delayed previously) to find three people waiting and one couple just gone in. The secretary informed me that it would be (at least) and hour and a half to two hour wait and I'm afraid I couldn't stand the anxiety for that long and fled. (It was really wierd because I attended an appointment with my dd the same morning and that was running late by 2 hrs and postponed as well!)

My next appointment is for 6pm tomorrow evening so we'll see what happens then. (Endoscopy appointment has been cancelled for 5th but hoping to reschedule before Christmas but might have to have cardiac appt before then - long story!!)

Sorry for long boring essay! None of these delays are helping my nerves so really appreciate everyone' s posts!!

RoxyRobin Thank you for lightening the mood with your post I promise to lay off the oat cakes (my version of porridge) the day before the procedure!! It's great to hear that all went well though and that you were able to cook 4 hrs later - that's really encouraging!!

Thanks again everyone ... still whimpering but desperate to get this thing over with at the same time. Having said that, still not sure I have the balls to go through with it!! Contradictory or what???!!

Minty forgot to say - good luck with your job interview tomorrow!!

Btw Roxy arf at your ultrasound experience!! Went through something similar post c-section when going home was dependent on how much one had pooed and peed and involved intense (embarrassing) monitoring and measuring of liquids and er, other matter etc etc Mortifying ....

Poor Whimper! Cant believe your bad luck with the appointments. You have been so brave too.

Let's hope your appt today goes without a hitch and that the specialist can reassure you. It would be such a shame to pull out now.

We'll be thinking of you. Let us know how it goes.

well I survived! I'm feeling completely washed out though this time, I'm sure it never hit me as bad before .

So I have to go again in two years time and probably two years after that so I get to enjoy this wonderful experience again!

Whimper, I think it became more apparent to me this time that my treatment is a little more unusual than the norm and so hopefully what you'll go through will be so much more straightforward.

I basically have a duodenal polyp which according to the consultant is relatively rare. It's currently benign but is the sort that could turn cancerous and as duodenal cancer has few symptons and low survival rate he wants to keep a close eye on me.

He had a go 2.5 years ago at removing it via endoscopy and whilst the operation was a success I ended up collapsing 2 days later (in front of my two year old daughter) and being rushed to hospital. I was basically bleeding inside becuase of the op and i ended up having a blood transfusion and a 5 day stay in hospital.

Yesterday was the 2nd endoscopy since then and he is still cutting away polyp so its not going to go quietly. I have everything crossed that i don't end up back in hospital like before and if I get through tomorrow OK then I probably won't.

I don't want to fill you with horror stories but as I say I think I'm an unusual case. Provided you get lots of hand holding and you take all the sedation they can give you then I hope you'll have a good experience (apart from the bowel clearout beforehand, the trumping afterwards etc etc!!)

Oh and don't go for an interview the day after as I've discovered its not that good an idea!!

I hope I haven't filled you with more dread. Try and keep positive and you WILL get through it OK

PS - Roxy, your post did make me laugh yesterday morning before i headed off to hospital! Now I know why my team looked quite relieved when I told them my last meal had been the night before

Hi Minty hope you are OK - good to hear that you came through the worst of it relatively well yesterday - and I hope that there have been no ill-effects from the procedure.

I feel quite ashamed reading your post - mine is so straightforward compared with what you have been going through. No wonder you were worried about the procedure given what happened before!! I'm so sorry you had to go through all that 2.5 yrs ago - I'm amazed you trusted the same consultant to treat you a second time!! It was v. brave of you to go ahead with it in the cirumstances.

Hope you can take it steady today and that you have been able to reschedule your interview!

Jalopy I have to say that I was so scared yesterday (and the fear sort of built up throughout the day ifyswim) that I nearly rang and cancelled but (a) having just given my dd a little talk on facing fears straight on and not avoiding things she dislikes, it occurred to me that I had to follow through on that one myself!! and (b) I knew all you lovely lot on here would be asking how it went - therefore I went ahead - so thank you again for all the support!!

The appointment went really well tbh. It was at 6pm and I was the last one on the list so it was all very calm at the clinic and I only had a very short wait. My consultant is absolutely brilliant too - very accommodating, calm and reassuring whilst being very competent at the same time.

We talked over all the issues and came to the conclusion that we are just going to do an endoscope this time. He also prescribed anti-anxiety meds to take just as I am leaving home so that I can actually get to his office!! He is going to give me a first appointment on a Wed afternoon so that I don't have to wait and he even said that he wouldn't force me to do anything and if I get there and can't go through with it, he will understand and perhaps then he can think about admitting me to hospital etc etc (although I would prefer not to have to do that obviously). So, all in all, a very positive experience.

Don't know when the appointment will be yet as I have to speak to his secretary this week (she had gone by the time I arrived yesterday).

Only slight blight on the day is that I happened to come across a medical programme (Dr Oz show) while I was de-stressing and surfing the tv channels late last night and he just happened to be discussing the current rise in oral cancer and what things to look out for etc etc. I have to say that what I have looks remarkably similar to what he was describing and is in one of the places where he says it often occurs ... so back to worrying .. although no point in doing so I suppose until we know for sure what we are dealing with.

Sorry (again) for the essay! Good luck to those of you undergoing the same or similar procedures soon!!