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jimsie
04-10-12, 13:34
I have a colonoscopy in less than 2 weeks to find out if i have colon cancer or not since it runs in the family. After doing a bit of research I have come across many, many horror stories about the procedure is extremely painful even with sedation etc. I have very little tolerance of pain and if it is anything like what people describe i have no idea how im going to go through with it. I know there are people who dont have anywhere near as much of a bad experience but it seems quite common for people to describe it as pure hell.

Is it worth phoning the hospital before hand explaining that I am so anxious? I worry that they will just be dismissive of it as everyone is a bit nervous getting procedures done. I'm not really sure if much can be done about it either. It seems to be something that is a hellish experience for one person and not for another person.

Annie0904
04-10-12, 13:40
I don't know where you did your research but I can assure you that I have a very low pain threshold and I never felt a thing..I was sedated and from being sedated I can vaguely remember be asked to move in a certain position then knew nothing until I woke on the ward and was given a cup off tea. Apart from needing to release wind (which they told me to do) after I never felt any pain at all. I phoned the hospital before I went and explained that I suffer from anxiety so they put me higher up on the list so that I didn't have to sit and wait for so long. :hugs:

cmc46
04-10-12, 13:52
I put off having a colonoscopy for months and eventually had it last March and wish I had done it before, for one thing it puts your mind at rest and it isn't as bad as a lot of people say, I read a lot of horror stories on the Internet and that was probably what put me off in the first place. Hope all goes well, I'm sure it will.

Laura123
04-10-12, 14:32
My dad has had so many of these, the truth is, if you don't take the sedation, yes, it's very uncomfortable, if you take the sedation, then it's a very vague memory. I usually find that when going in for any kind of precedure hospital staff are very aware that people can be extremely anxious and they are very good at making you comfortable and calm. You can do this and you will be fine. Xxx

jimsie
04-10-12, 19:38
Thanks for the responses, I feel a bit better about it now. It is true that the hospital staff are good at making me feel at ease. Although the fact that i wont remember it afterwards dosn't really make me feel better about it as i will still have to go through it.

I'm not really sure why there are so many horror stories online, surely if its that bad they can just tell them to stop? I hope so anyway.

Anxious_gal
04-10-12, 20:07
There's horror stories about everything!
Tell them you're anxious and they might adjust the Seditive dosage.
Once the meds have kicked in you'll be almost asleep and shouldn't feel much if anything.
I don't think the procedure is too long?
Good luck x

annette1
05-10-12, 04:29
jimsie

I had a colonoscopy a few months ago & like you worried that my anxiety would kick in & I'd panic. I worried about the pain, embarrassment & most of all my anxiety about being touched. I need not have worried, it was all explained carefully, they took on board my worries & I was given a sedation.

It took immediate effect & I didn't know a thing about it until I woke up 2hrs later! Try to avoid reading any more horror stories, there are always people out there who exaggerate!

You will be fine, just accept the sedation.

jimsie
11-10-12, 18:23
So its not long until I have to have the colonoscopy and i'm still really anxious. I seem to be spending all of my spare time doing research about it and reading people's experiences.

I am pretty worried about the sedative they give now. Apparently it dosn't actually relax you at all, all it does is make you forget the whole thing afterwards. I'm not sure how true that is but that makes me really worried. Ideally I would like to be able to remember the whole thing so that I have an idea of how pain or uncomfortable it really is. Since I am supposed to be having these things every 5 years I can't keep going through the anxiety of constantly wondering if its going to be a hellish experience or not.

I have been on the low fiber diet all week which isn't too bad but im a bit constipated which is making my hemorrhoids flair up and im starting to crave fruit/vegetables. I don't think it is helping my anxiety much either, im in a constant state of panic, i can't consentrate very well and im not getting much sleep. The anxiety is probably worse than the procedure itself which is why i don't really want to go through all of this every time i need a colonoscopy.

nomorepanic
11-10-12, 18:43
Why not try it without sedation. I never have it and yes it is painful and uncomfortable but not agonising or excruitating.

jimsie
13-10-12, 02:41
I think my plan will be to ask them to give me the full amount of sedation but also request that if it is still too painful for me to tolerate then they have to stop the procedure. I am perfectly happy to try one of the other methods of detecting colon cancer or doing it under general anesthetic.

I'm not sure if there will be a problem with letting me stop the procedure if it becomes too unbearable? If they can, then once the whole thing is over and if i don't remember any of it then at least i will know it wasn't so bad that I had to tell them to stop.

Does this sound like a good idea? I don't really want to try and tell them how to their job or anything but this is the best plan I can come up with to stop me from having a bad experience or worrying that i had a bad experience and forgot about it.

nomorepanic
13-10-12, 02:46
You won't know it is painful if you have sedation to be able to tell them - that is the whole point of it.

jimsie
13-10-12, 10:36
You won't know it is painful if you have sedation to be able to tell them - that is the whole point of it.

According to the guide they have given me people find it painful even when they have sedation. Some people say the sedation is just an amnesia drug to make you forget the whole thing.

nomorepanic
13-10-12, 14:46
Yes so you won't remember it being painful.

You have to go through with it so why not just go and get it done and see how it goes.

It may not be that bad at the end of the day!

jimsie
13-10-12, 18:53
I have found this website with people talking about their own experiences. It's quite interesting that all of them say its pretty much painless with or without sedation. I wonder if that website would just avoid posting the bad stories to not scare anyone off.

http://www.healthtalkonline.org/Cancer/Bowel_screening/Topic/1402/

So many conflicting stories around the internet, all from one extreme to another. I don't know what to think anymore.

That website seems really useful though. I'm sure others on this website would benefit having a look on that.

Annie0904
13-10-12, 19:37
I have never heard any one say it was painful and I know many others including myself who have had it done.

nomorepanic
13-10-12, 19:38
I wouldn't keep searching for answers to be honest. Everyone is different and there is a balanced view on here as to whether it hurts or not.

As I said just go and see how it is for you and if it is too painful then ask for sedation during the procedure.

nigela
14-10-12, 21:03
Hi I had one done a couple of weeks ago. i worried about every thing including taking the laxative! it was not as bad as the worry for 2 weeks before! I had no sedation just an injection of mixed pain relief and muscle relaxant-they said if needed it could be topped up. My friend was even offered gas and air as she felt some pain. however she had a bowel o in the past. yes i could feel it-but at last i was fully able to have told them to stop if needed and also when it did hurt I told them and he went a bit easier! apparently its worse for women than men as there isn't as much space in there! at first i thought never again-but if needed I wold do it again and without sedation-yes apparently it makes you forget! I like to know what is going on. I saw most of it on te screen. It is such a worthwhile test to save your life. It only took 20 mins.No recovery time-well abut 30 mins to pass the wind out-then felt so good hungry and enjoyed my toast and tea so much!You will be fine. they let me take my relaxing sea sounds in on my little potable music muvo thing. Just ask they won't mind.good luck
after it is such a relief. the worry is the worst bit and then you you wonder why we put ourselves thru so much worry!

bandsaw
14-10-12, 21:16
Nothing to worry about jimsie, i had one this last tuesday without sedation, all you get is like bad wind discomfort and some slight sharp jabs where camera is going around bends, you can watch on screen whats going on and everthing is explained to you, was very interesting.

Frankie123
14-10-12, 22:07
Hi, I have had five colonoscopys because I am on a five year recall system due to doctors having found several polyps in my colon. Never once have I experienced any pain - only a slight feeling of discomfort. Yes make sure you ask for the sedation and then it will only be a vague memory. So far as I am concerned the worse bit is the day before when you have to take the medicine to clear your bowels which has you sitting all day on the toilet. Whatever you do don't plan to go far from a toilet on the day before. The other good news is that they normally give you the result there and then so you do not have to spend any further time worrying. Best wishes.

jimsie
14-10-12, 23:19
Thanks for the responses, it helps a lot. Strangely enough im actually looking forward to the prep. :wacko: I'm curious to find out how bad the taste can really be. 2 letres over 2 days dosn't seem too bad. I will probably regret being so confident about when i have to take it tomorrow. At least I have control over that so it dosn't scare me like the potential pain does.

nigela
15-10-12, 09:21
make sure to chill the liquid-take a mint with it and a nice swig of some cordial you like too! Also drink with a straw right to aback of mouth helps! mine was moviprep-wasn't too bad really. certainly didn't make me gag or anything.
good luck
the folk on here helped me tremendously!
Nigela

jimsie
15-10-12, 20:52
I am currently half way through my first liter of moviprep. I had my first glass with lemon cordial, i had prepared for something really bad and it only tasted like lemon cordial, i started to wonder if i had missed something.

Then started my second glass with lime cordial, then it started to get more difficult. It has a weird thickness. I started to feel a bit sick and dehydrated so im gonna take a break and drink some normal water for a bit.

It still dosn't seem to be as bad as some people describe though, maybe it will get worse.

---------- Post added at 20:52 ---------- Previous post was at 19:35 ----------

Yep, its got much worse lol. It's not so much that the taste is bad but i very nearly vomit every time i drink it. I have 1 glass left but its already kicked in and i keep having to run to the toilet.

jimsie
16-10-12, 09:49
Finished off the rest of the Moviprep this morning. Again, I couldn't finish the last glass but I think i did quite well overall. It really wasn't too bad i just felt like i would vomit if i kept drinking towards the end.

If that really is the "worst part" then the colonoscopy itself wouldn't be bad at all. Unfortunately I very much doubt that will be the case for me, needless to say I didn't really sleep last night and am a nervous wreck.

Annie0904
16-10-12, 10:17
The worst part is over if you have finished the Moviprep (that was the worst part for me) I got so anxious about the colonoscopy but I needed have. I wouldn't be anxious if I had to have another one (apart from taking the moviprep). Hope all goes well for you, will be thinking about you :hugs:

jimsie
16-10-12, 18:17
I am back from the hospital and unfortunately it did not go well. :weep: I waited for a long time anxious as hell. I made sure with both the doctor and the nurse that if it got too painful i would ask them to stop and they both agreed.

So they put the pain killers and the sedation in, it didn't really effect me at all other than a few minutes of feeling light headed. Then they put the camera up my rectum which was fine but then 3cm inside my colon it was just too painful to the point of where i instantly pulled the camera back out myself because i couldn't stand it. That is completely out of character with me and i kept apologizing but i couldn't help it.

They were very patient and nice about it and told me not to worry. We tried again in a few different positions and with a smaller scope, but nothing worked, i just couldn't cope with the pain. One of the nurses suggested that i just tried to endure it because its very important to get it done, but the male doctor just said that it shouldn't be forced if its intolerable which I agreed.

I feel really disappointed with myself for not being able to go through with it. They told me not to worry and that some people just have a sensitive colon. I can't praise the staff enough and if i knew they were going to be that nice I wouldn't have worried at all.

I can see where all of the horror stories come from now and if the doctors had tried to force me to go through with that then i would be traumatized as well. They said they will try and plan for me to have it under general anesthetic but it might be a very long wait. They also seemed quite concerned about my symptoms so no doubt i will just keep worrying about that.

I don't know if its because i do have a sensitive colon, or a low pain threshold or immune to the sedation or that i just got myself too worked up. I am quite disappointed but at least im not traumatized.

Annie0904
16-10-12, 18:28
Really sorry it didn't go well for you. Maybe they gave me more sedation than you had because I wasn't aware of anything. :hugs::hugs:

jimsie
16-10-12, 18:33
Really sorry it didn't go well for you. Maybe they gave me more sedation than you had because I wasn't aware of anything. :hugs::hugs:

Yeah, I find it amazing that some people don't remember anything or feel like they were in twilight sleep. I had none of that, just a little bit hazy at first. I'm pretty sure they gave me the maximum amount towards the end because I was complaining so much but it just had no effect on me. I could have easily driven home if i had to and feel completely normal now.

nomorepanic
16-10-12, 19:08
I think you were so tense and you expected it to be so bad that it was in the end.

Surely the risks of having a general are something else to worry about though?

Ask them if you can have a CT scan. Another member on here is having hers done that way.

jimsie
16-10-12, 19:55
I think you were so tense and you expected it to be so bad that it was in the end.

Surely the risks of having a general are something else to worry about though?

Ask them if you can have a CT scan. Another member on here is having hers done that way.

I'm not sure what the risks are for a GA, they seem to be used for colonoscopies in America quite often. I did mention a CT scan but they said it wouldn't be thorough enough to detect whatever is causing my symptoms. :shrug:

nomorepanic
16-10-12, 20:51
What do you think you will do next? Maybe try it again or go for the general?

The scan is a specific one - I can't remember the name of it though

carmen2012
16-10-12, 21:00
Hi No more panic, the CT scan that I'm having on Thursday is a Pneumocolon.. I'm having it done on Thursday.. I was scheduled to have a Sigmoidoscopy last week but the Dr felt that because of my anxiety it would be too painful I don't know how true this is as quite a number of people on here have had it done with sedation... I find all the different procedures confusing ... I can imagine how your feeling Jimsie maybe go & have a chat with your GP... :)

nomorepanic
16-10-12, 21:18
Thanks Carmen - I was going to look up your posts and you saved me from looking lol.

jimsie
16-10-12, 21:40
Hi No more panic, the CT scan that I'm having on Thursday is a Pneumocolon.. I'm having it done on Thursday.. I was scheduled to have a Sigmoidoscopy last week but the Dr felt that because of my anxiety it would be too painful I don't know how true this is as quite a number of people on here have had it done with sedation... I find all the different procedures confusing ... I can imagine how your feeling Jimsie maybe go & have a chat with your GP... :)

Thanks for the info. That is a 'virtual colonoscopy' isn't it? Can I ask if you are doing that privately or through the NHS? I know that certain NHS hospitals do use them but they are pretty rare, I cant find a hospital near me that uses them. The downside to a virtual colonoscopy is that if they find polyps then I would still have to go through a normal colonoscopy to get the polyps removed.

---------- Post added at 21:40 ---------- Previous post was at 21:31 ----------


What do you think you will do next? Maybe try it again or go for the general?

The scan is a specific one - I can't remember the name of it though

Yeah, my plan is to try and get it done under GA now. I can't really see any good reason why a GA wouldn't work. The risks seem to be pretty minimal.

I was just looking at my notes and found that the doctor doing the colonoscopy was just a trainee and apparently having someone with less experience can make it more uncomfortable.

I can't risk going through all the prep, having to arrange someone to give me lifts and the time off work just for it all to be unsuccessful again though. As the nurse said, it could be that i just have a 'sensitive colon'.

carmen2012
17-10-12, 07:05
I have health anxiety Jimsie, going to the hospital last week was an ordeal & I had prepared myself for the Sigmoidoscopy which is as you said a virtual colonoscopy.. To be told by the Dr that she didn't think it was the right thing for me was very frustrating as I had prepared myself for it so I walked out of the hospital feeling back to square one ..

The Pneumocolon is on the NHS but I am so worried more about what they are going to find as I have had diahorrea for months & I won't get my results tomorrow either that will be another appointment...

I fully sympathise with you hun & although trainee Dr's have to start somewhere you would have been better off having an experienced one it does make a difference as to the amount of discomfort..

Your Dr should be able to organise a GA or maybe it's just a case of an experienced one but we can't pick & choose... Let us know how you get on :)

nigela
17-10-12, 09:05
You can have a CT colonoscopy-called virtual. I looked into having this but you still need the laxative first. however you still get the gas to inflate the colon but the rest is painless. However you have to bar in mind that if any polyps etc are seen then you cannot have them removed unless you then have the ordinary colonoscopy.
The virtual one I think was on offer from spire private healthcare but was about £600 or £700.

jimsie
22-10-12, 18:33
The doctor just phoned and decided the best plan would be to have a CT scan in the next few weeks. Although this does mean doing the prep again and having even more time off work im glad that they are arranging something fairly quickly.

I think this was a result of me sending a complaint to the hospital. I wasn't quite sure if I was in the right to be complaining since most people are acting like its my own fault but at least something good has come from it.

nomorepanic
22-10-12, 18:55
What did you complain about Jim?

jimsie
22-10-12, 20:13
What did you complain about Jim?

I complained about the sedation having no effect and the fact that the procedure was so painful that I had to stop the procedure almost immediately. Maybe some people can deal with that kind of pain but I wouldn't wish that on anybody, especially when it is only described as "uncomfortable bloating" and maybe some sharp pain around bends.

This was an intense pain from the very beginning that felt like someone was trying to impale me from the inside. My instant reaction was to pull the scope out myself, there is no way I would have ever been able to just lie back and take that. As you say, maybe its because I was so tense that I was hyper sensitive to anything but surely that is what the sedation is for?

Many people describe having very little perceived pain with the sedation, so at the very least I hope that complaining will mean more effort will be put in to ensure more people have a better experience.

I really don't think anyone should have to go through that level of pain just to diagnose something that is so important. I was also pretty annoyed that I wasted 3 days off work, having to take all the prep and having to put other people out to drive me.

jimsie
19-11-12, 18:45
I had the CT colonography (virtual colonoscopy) today and it was much easier. My anxiety was really bad as usual and they kept telling me to stop panicking which is easier said than done. Fortunately this time around it really was only a bit uncomfortable and not painful.

I felt the air bubble up like last time which made me scared because of the pain that followed the air the first time round. But there was only the air and no intense stabbing pain. If I knew that is all there was my anxiety wouldn't have been as bad.

Now I just have to wait a few weeks to get the results but im very glad that I have finally got it done.

Annie0904
19-11-12, 18:48
Pleased to hear you have finally got it done and that this procedure wasn't so painful for you.