Colonoscopy and other setbacks: Hi everyone... - Endometriosis UK

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Colonoscopy and other setbacks

TinaT83 profile image
20 Replies

Hi everyone, wishing you all pain free days.

So I've been waiting quite a few weeks for an appointment with an endometriosis specialist and I finally had it last week to only be told that I need to have a colonoscopy first before my laparoscopy- due to bowel problems etc. I mean, I'm glad they're being thorough but it's another waiting list, another doctor to talk to... Aah! Frustration! Trying not to be nervous about the colonoscopy. I feel that we're all used to being poked and prodded, but it sounds painful. Anyone been through this procedure with any advice on it? Heard that the prep beforehand is the worst bit?

Lots of love xxx

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TinaT83 profile image
TinaT83
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20 Replies
Snad profile image
Snad

Hi Tina,

I had a flexible sigmoidoscopy done a few month ago... Not exactly the same as the tube is a lot shorter than the one used for colonoscopy.

The preparation the day before is awful. You have to drink 2 litre of moviprep (prepare it beforehand and leave it in the fridge, it tastes a little bit better when chilled) and drink plenty pf water as well and no food. The preparation starts working about 30min after the first litre and you spend the rest of your day between your sofa and the toilet. Get a nice book and some baby wipes.

The day of the procedure is ok. The bowel doesn't have any inside nerve endings so the procedure is more or less pain free... You feel like you need to empty it and some pressure but nothing unbearable.

I had my appointment quickly and the results are given to you straight away.

Call them and explain that you need it done urgently as you are waiting for other procedure to be done as well.

Hope that reassures you a bit.

Have a nice pain free week end

TinaT83 profile image
TinaT83 in reply to Snad

Thank you for the advice! You make it sound very easy! Hope I'm just as brave! Sending hugs xx

JillianoB profile image
JillianoB

Hi Tina

I've had a colonoscopy before. The prep is awful!! You get a list of foods you're allowed to eat the day before to avoid discolouration in the bowel then the dreaded picalax! I agree with keeping baby wipes handy!! The actual colonoscopy wasn't too bad, I had a screen in front of me so I watched it happen which freaked me out a little bit. It wasn't really painful until it got so far then it hurt a little but I had gas and air and that was enough pain relief for me. Good luck and I hope all goes well.

Jill :)

TinaT83 profile image
TinaT83 in reply to JillianoB

Just gas and air?! You must have a high pain threshold! Thanks for the advice/ I'm not so worried now. Xx

Kaysha40 profile image
Kaysha40

Hi, I feel I need to be honest with you, as I wish someone had prepared me before I had mine. I had blood in my stools and constipation etc. I had it fast tracked so it ended up to be in one of the nsh trucks. Never again :-( you have a choice of gas an air and light sedation ( go to a hospital where they can knock you right out ) the nurse told me it's not that painful and I would be ok with gas and air. Never again ! It was really painful from start to finish. I had a tortious colon and adhesions so she found it really hard to do. If you think you have endo please please go to a hospital and be sedated. The prep was nothing compared to that. The only thing was mine did not work straight away it started working in the middle of the night. I was up all night and there really early. I've tried to keep this as brief as possible, I don't want to scare you I just want you to be prepared big hugs kx

TinaT83 profile image
TinaT83 in reply to Kaysha40

Great advice and yes I'd rather be prepared. Sorry you had to go through that! Rest assured, I'll be going to the hospital and will ask for as much pain relief as I need! Thank you, sending hugs cx

GrittyReads profile image
GrittyReads

Hi Tina, (sorry this is so long).

I've had it twice. To be honest, it depends on the pain control and your condition(s).

The first was nearly 20 years ago, to check there was nothing more serious going on than bad ibs (my mum died of cancer of the colon) - I now know that the 'ibs' was probably my endo, which wasn't being taken very seriously, at that time. This first one was done by a very brusque, male nurse (I think), who specialised in the procedure, but who wasn't very sympathetic. There was no pain relief offered, and before he got more than half-way round - what was supposed to be a full colonoscopy - I was screaming in pain and nearly passed out, so it was stopped.

I had another about 4 years ago because I'd had blood in my stools, so given my family history they were not taking chances. This time I saw a consultant who specialised in all things 'bowel', and who was lovely. At the initial consultation he performed a very gentle, courteous examination: there were some 'baby'(?) haemorrhoids, which (with my permission) he banded - all was fairly painless, just a little 'passing' discomfort then and a day or so later ;-), & I was soon okay. He felt these were the cause of the blood/problem but decided a colonoscopy was a good idea given my history.

I really would have it, as it's being offered, then you know that all sorts of conditions have been ruled out.

I'd told him about the pain during the previous colonoscopy, & he could not believe there had been no pain relief. So, on the day he gave me an injection of a mild painkiller. He also told me to tell him if things got painful, as he could do more, if necessary. I stayed awake and fairly aware the whole time, and watched the entire procedure on the screen as he talked me through it. I felt no pain whatsoever, plus it was so reassuring, and ... well, almost interesting! He treated me like an intelligent human being, and some of the time, eg. before, after, & waiting for the pain relief to kick in, we talked about Literature (!).

I was lucky, in that he didn't find anything remotely worrying, so I don't know how much other conditions could have made the pain worse - but he really knew his stuff, and gave me the impression that pain did not have to happen. I walked out with my partner a few hours later, after food and rest and tea(!!), and I was fine, back to normal, by the time we were home.

I would go ahead with it, but make sure that you are seeing a really qualified specialist. This was all done under the NHS, but because of long waiting lists at the time (there had recently been a big press promotion about bowel cancer) I was actually dealt with at a private hospital where the specialist also did NHS work (so the courtesy, time in a 'real' bed - before and after- and sandwiches were possibly better). The wait for the first consultation was fairly quick, a few weeks, but once it wasn't thought serious it was a long wait (but still well within time limits) for the actual colonoscopy. I've no reason to believe he was any better just 'cos he was partly private, and he did do NHS: so just try to get a good specialist. You do have a right to ask around in your area, so see who is though to be the best, and ask to be referred to them. Ask people for names, but do it via private messaging, not on this site.

Nb, I guess I'm lucky, in that I work at home, and my partner is supportive, but I really did not find the whole preparation thing remotely problematic. I didn't have any problem with juggling the diet, and the picalax was ... interesting: but yes, stay near the loo, have the wipes handy and it's okay. If it's what needs to be done for greater knowledge and greater well-being, just accept and do it - read all the bumpf well before and be ready in advance with the food stuffs and timing.

Main things are: be sure of your medical person, and talk through the pain issue, thoroughly, beforehand.

Take care and I hope it all goes well,

Gritty

TinaT83 profile image
TinaT83 in reply to GrittyReads

Wow, sounds like you've been through a lot. Very brave and I hope I can be too. My doctor is a specialist which is great, but the waiting is frustrating :( my worry is that I'm in so much pain I'm scared of anyone coming near me (my poor man!) so you're right being prepared is key! Fingers crossed I can channel your courage on the day. Hugs! Xxx

GrittyReads profile image
GrittyReads in reply to TinaT83

It's a pleasure, hope it all helps. I feel a bit of a fraud as none of it seems that awful looking back: but maybe that's 'cos I've got used to one of my GPs thinking I'm just a hypochondriac.

You look after yourself, treat yourself, try to dispel all stress and work on towards 'calm' on the day. Also I hope it paves the way to sorting the other issues.

Let us all know how you get on.

Gritty xx

Hi I haven't had a colonoscopy but have had to do a bowel prep for recent surgery. I was dreading the bowel prep after reading horror stories so I just want to reassure you that I at least did not find the bowel prep bad at all!

I had a choice of picolax or moviprep. I chose picolax because you only had to drink x2 cupfuls of the stuff (about 300ml in total) 6 hours apart compared to the 2 litres of moviprep. The only issue I had is that it didn't start working until an hour after the 2nd dose so it was 7 hours before I even had any "movement". So if its picolax I'd recommend taking it as early in the day as possible to avoid a late night.

To be honest I've spent more time on the loo with diarrhoea in the past due to my endo than I did with the bowel prep so it didn't phase me and at least now days there's mobile phones and the Internet to keep you entertained whilst you're glued to the loo!

Definitely recommend the flushable wet wipes though to avoid a sore botty 😝.

Best of luck, x

TinaT83 profile image
TinaT83 in reply to confusedandworried

Thanks for the advice! You make it sound very easy! Lots of love xx

Kaysha40 profile image
Kaysha40

Hi,

I should have said I've had an emergency c section and she did say that could cause adhesions to stick things together. I've just had ultra sound where they have found endo in several places and fibroid so maybe this as well as the tortious colon was what was causing my pain. I truly believe I have endo on my bowel. I'm having my lap on Monday so I will no more then. I truly don't want to worry you, I really don't. I went there thinking it wouldn't really hurt and I got a shock. If someone would have prepared me, I would not have made the choices I made. It very we'll be painless for you. I can only speak for me, and will make good choices if I ever had to have one again. K x

TinaT83 profile image
TinaT83 in reply to Kaysha40

Thank you for the advice. Everyone on here been amazing and really honest. Armed with all of these experiences I feel much more prepared. Sending hugs xx

nicolajones63 profile image
nicolajones63

Im in nearly the same predicament as you. I know ive got endo on my bowel which my gynae doc has said he will probably do a part dissection soon but im having a colonoscopy on Tuesday for all the stomach pains I get incase its not related to the endo so at the moment am reading everything about it for advice. Everyone I have spoken to has said have the sedative so that's what im going to do. Im definitely not looking forward to the prep. I will let you know after Tuesday how it has gone x

persil profile image
persil

Hi Tina

Try not to worry about the colonoscopy I've had several there unpleasant and the prep is the worst bit. My advice is get a cream you can use after every loo break do drink all the fluid they tell you to stay by the loo and most important rest reset rest. Once your at the hospital if you have sedation l would you really won't know anything and you will be fine and of course you get the results straight away so best to have someone s

With you as you may still be a bit grogy.

Best of luck hope all goes well

Regards

Persil xx

TinaT83 profile image
TinaT83 in reply to persil

Thank you for the advice, feeling much braver with all you ladies experiences to see me through! Lots of love xx

moomoo21 profile image
moomoo21

Hi I have had 3 colonoscopys. I have taken moviprep each time. It Is hard to get down and keep down. I found putting it in the fridge so it is cold and adding cordial and ice cubes really helps. I have had the procedure with no sedation and definitely would not recommend it I was in agony and had to be held down but did manage to finish the test. The other 2 times I have had sedation and pain relief and it was a breeze compared to the first time still painful but bearable. I think getting round the bends of the bowel is the worst bit but my nhs specialist was brilliant and took his time and gave me a little more pain relief to take the edge of it. I have crohns disease so I think I had a lot of inflammation which was why it was painful. Please let me reassure you if I can get through this 3 times you can. I have to have a colonoscopy done every 3 year's and with the experiences I have I have no hesitation with having the procedure done again under sedation. Good luck with everything. If I can be of any more help or if you have further question please ask.Maryx

TinaT83 profile image
TinaT83 in reply to moomoo21

Thank you so much for the advice. You must be so brave to do it so many times. Once should be a breeze for me then! Hope you're feeling well xxx

nicolajones63 profile image
nicolajones63

I had mine last week and it really wasn't that bad. I agree the prep was not nice but I was worried I was going to feel hungry but even that wasn't a problem. With me they found and removed a polyp but still no nearer to finding reason for my pain so I hope you have better luck x

TinaT83 profile image
TinaT83 in reply to nicolajones63

Thanks for the advice lovely. Glad to hear it went ok for you, but sorry there wasn't a straightforward answer. What is their next step then? Hope you get answers soon xxx

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