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Refusing colonoscopy

I've had one colonoscopy. It was absolutely agonising and I swore that I would never have another in my life, no matter what. The GI wanted to do another very recently as my problems have become very bad, but when I had a slight panic attack and refused point blank she offered a CT scan (which I am currently waiting for).

I'm just wondering, am I a complete wimp or are there many other people who are utterly terrified after experiencing colonoscopy for the first time? Am I lucky that my GI has been OK about it? And are there any health concerns about turning them down? I'd be interested to hear what other people think.
 
Location
UK
Lizzie, I am of a similar mind and will be interested to have this conversation with my GI next Friday. As I understand it, via the IBD nurse, he's suggesting another colonoscopy to get biopsies from the terminal ileum as this is one of the things required before I can begin infliximab or similar.
In my previous (and only) colonoscopy they couldn't get the scope round far enough as I have a loopy bowel which not only made it very difficult for the doctor to manoeuvre the scope but also caused me severe pain..I'm not talking discomfort or mild pain, I'm talking excruciating agony.
If they can knock me out completely then I'd consider it if there's no alternative. Failing that then like you, I think I'd have to refuse. And to be honest, I can't see the point of them trying again, I still have a loopy bowel and I doubt they'd do any better with the scope anyway!
We each know what our tolerance is for these invasive tests and have to follow our instincts I feel. Only you know what you can bear, as only I know what I can.
Bunty x
 
Colonoscopy are a necessary evil unfortunately. I was totally knocked out for every one and I had no pain afterwards. The worst part is the prep the day before, but I used Suprep for my most recent one and that caused the least discomfort.
 
I'm sorry you had such a bad experience with your colonoscopy. First, you are not a wimp! We all handle things differently. I just had my first one in August and I was incredibly nervous and started crying when they were giving me my IV. I get anxious before procedures I've never had. I would be OK if I had to get another one though. I just had "twilight" sedation, but they also gave me some Benedryl because of my anxiety, so I fell asleep right away and woke up as they were wheeling me into recovery. I had a little bit of discomfort from the air, but after a nap at home I was fine going to work the next day. No pain when I woke up. Was your pain during the actual procedure? I know the hospital I go to also offers people to go completely out under general anesthesia (I'm in the US). Is that an option you would consider? I think it is good that they are offering other, less invasive tests first. But, there may come a time when it would be more beneficial to get another scope done, so I would talk to your doctor and have them make it as comfortable for you as possible. Good luck!
 
I had a bad experience too. After not wanting to, my GI sent me fo a colonoscopy. After drinking the prep, which is supposed to make you use the loo, my bowels "shut down" - I think I only went twice.

The bowels started cramping so much too, really agonising, I was pacing up and down due to the pain, and went to A&E but the doc didn't think anything of it, and I left with some anti-spas meds.

Anyway, had the colonoscopy the following morning, which was difficult due to "poor prep" (argh, I drank the stuff but it didn't send me to go...) and received the diagnosis of CD. All the nurses, my GI, GP, all dismissed my complaint of severe cramping as the bowel settling down after the scope. Eventully, an agonising 5 days later of no bowel movements, I was sent to A&E, my inflam markers were through the roof, and I started a week long stay of IV steroids.

Yet no GI can explain why the prep caused this, saying "you just happened to flare at the same time as the prep/scope, but it's not related". I mean I had inflammation before the scope, but I was stable. And they want me to have another one now :(.

And when I ask if this will happen again, it's the same line of "there's no evidence to suggest..."
 
My first experience with a colonoscopy was terrible. I was 14 years old and it was a nightmare. I requested to be put under general anesthesia for the following one, because I was so traumatized. Luckily, still being at a children's hospital, they agreed to it. Then I transferred to an adult GI and flared up again, so I needed a scope. I told her I had a bad experience in the past as a child and she made sure I had plenty of drugs on board. Well, believe it or not, it was a very good experience! I had no pain at all. Actually it was even a double scope (endoscopy and colonoscopy) and I thought it was a walk in the park. I had another colonoscopy last week (same GI), but this time it was in her clinic and there was an anesthetist. He asked me if I wanted to be lightly or deeply sedated. I said deep, only because just before the procedure, I felt quite anxious. He gave me so much drugs (4 different ones) that barely remember my whole day. In fact, next time, I'll ask for a light one... It was almost general anesthesia, but I was breathing on my own...
So my point is, I understand what you're going through. If you explain your fears to your GI, they should make sure to give you enough drugs. Not all experiences will be bad. Good luck!
 
Two agree with talked to your GI. I had one bad scope after mostly okay ones. I have talked to my GI and he agreed to make sure to use more of the drugs for sedation. Any decent GI should be willing to discuss and alleviate your concerns.
 
It's a pretty vile procedure and I can,t think why they wouldn,t offer a general anaesthetic or something else I,m having one done on Monday and if I have pain they,ll now all about it.just remember your the boss.good luck
 
Thank you for all the replies. In answer to various questions and points raised - the pain was awful right from the start and got worse. I had explained in advance that I was nervous and was promised sedation. That was not offered on the day and I demanded it, so a very annoyed doctor came and jabbed me with something. It had no effect at all. The person doing the colonoscopy was also very irritated with me and really belittled me and humiliated me, which made me even more stressed. A few kind words might have calmed me down. Apparently the drug I was given doesn't work if you are highly stressed. I do wonder if they even gave it time to take effect, no sooner had I been jabbed than the procedure started.

I thought it was an established fact that bowel prep can cause flares?

I think there are meant to be good reasons for not totally knocking a person out during a colonoscopy, increased risk of bowel perforation, but I think twilight sedation is the gold standard, isn't it? I naively expected that this was what I would be getting! I'd been reading this forum and hadn't taken in the differences between medical practice in America and that in the UK. My feeling after my experiences over the last few years is that we don't experience the highs or the lows that Americans receive. I'd love to hear whether anybody in the UK has been given twilight sedation on the NHS? The doctor barely had the time to jab me with a needle!
 
Dunno about catching up on the reading, I seem to recall I was racing up and down stairs more than anything else! I've just done a quick google and found some scientific research by Stacy Menees MD et al entitled "Does colonoscopy cause increased ulcerative colitis symptoms?". The paper is written in very scientific language but the conclusion seems to be that it can do so. The study participants did not have active disease at the time of the colonoscopy, so that seems to rule out them being at the start of a flare before the procedure.
 

Jennifer

Adminstrator
Staff member
Location
SLO
Thank you for all the replies. In answer to various questions and points raised - the pain was awful right from the start and got worse. I had explained in advance that I was nervous and was promised sedation. That was not offered on the day and I demanded it, so a very annoyed doctor came and jabbed me with something. It had no effect at all. The person doing the colonoscopy was also very irritated with me and really belittled me and humiliated me, which made me even more stressed. A few kind words might have calmed me down. Apparently the drug I was given doesn't work if you are highly stressed. I do wonder if they even gave it time to take effect, no sooner had I been jabbed than the procedure started.

I thought it was an established fact that bowel prep can cause flares?

I think there are meant to be good reasons for not totally knocking a person out during a colonoscopy, increased risk of bowel perforation, but I think twilight sedation is the gold standard, isn't it? I naively expected that this was what I would be getting! I'd been reading this forum and hadn't taken in the differences between medical practice in America and that in the UK. My feeling after my experiences over the last few years is that we don't experience the highs or the lows that Americans receive. I'd love to hear whether anybody in the UK has been given twilight sedation on the NHS? The doctor barely had the time to jab me with a needle!

With the way you were treated, that's uncalled for. Are you able to find another GI? I can try tagging some members who are also in the UK and see if they've had a better experience with their GI and maybe you could try seeking them out. Hannah-Rose, Misty-Eyed, Terriernut, emmaaaargh, xX_LittleMissValentine_Xx, Niks, Sascot, StarGirrrrl, and valleysangel92 what has been your experience with scopes in the UK and is your GI any different (see the quoted post above)? Any information is appreciated. Thank you! :)

I've heard of many people in the UK not being offered sedation. In the US it is standard to give twilight sedation because the procedure is painful. If the pain is too much for the patient to handle then the procedure cannot be completed and it's a failed attempt, all that for nothing. It's also the standard here that your GI performs the scope not someone else.

I had one GI years ago who began the procedure immediately after the drug was put into my IV. It did not have time to take effect and I was yelling and struggling the whole time until the sedation finally took effect and I woke up yelling at the staff in the recovery room. One bad experience can make you never want to do it again so I understand where you're coming from. I never went back to that GI and I reported him to the hospital. He was not gentle in any way and clearly wanted this done as fast as possible.

When I saw a new GI years later (that experience made me avoid seeing a GI and I got medication refills from my previous one instead by contacting each other by phone only) I told him what had happened and said that I don't want to feel anything and to please not start until I'm ready. When I was taken back to have my first scope with him I was given medication to calm me down and then given twilight sedation (Versed). Every couple minutes he would ask me, "how are you doing?" Meaning, "are you ready?" Each time I would say, "I'm not ready, I'll remember this!" He asked about 5 or more times and each time would ask the nurse to give me a little more medication until my replies became slower and slower making it clear that the Versed was working and he could begin. I've had 3 scopes with him and each time has been awesome, meaning I remember nothing and the prep is once again the worst part about the procedure. My last scope was done by a specialist further south for a second opinion and they were supposed to do a balloon dilation if needed so I was given general anesthesia instead of twilight sedation.

Scopes are usually done with twilight sedation because they need the patient to move around some during the procedure but in some cases it doesn't work well enough or the patient has far too much anxiety so in those cases patients can be given general anesthesia. When I was a kid having these scopes done I was given general anesthesia.

While bowel prep does irritate the bowels and makes them empty their contents it does not cause flares. Scopes are needed to monitor disease activity on a microscopic level which imaging tests won't see and it's also used to screen for colon cancer which were are at a higher risk of getting.
 
Location
UK
Lizzie, part of my colonoscopy report said that it was suggested I had a general anaesthetic if I ever needed another. My IBD nurse dismissed this when I spoke to her a few weeks later, saying just what you've been told, that they need you to be somewhat aware because they need to know how you're doing and they're not perforating your bowel or something. Maybe each NHS area have different ideas, regulations, etc.
And I agree, GB and USA do have different ideas...not saying either is right or wrong, just different.
They took their time with me, we're very caring and explained everything...but it still hurt like nothing on earth!
Bunty x
 

Jennifer

Adminstrator
Staff member
Location
SLO
Dunno about catching up on the reading, I seem to recall I was racing up and down stairs more than anything else! I've just done a quick google and found some scientific research by Stacy Menees MD et al entitled "Does colonoscopy cause increased ulcerative colitis symptoms?". The paper is written in very scientific language but the conclusion seems to be that it can do so. The study participants did not have active disease at the time of the colonoscopy, so that seems to rule out them being at the start of a flare before the procedure.
This is the study you're referring to correct? http://www.ncbi.nlm.nih.gov/pubmed/17206634

It's not clear to me in the study what the cause was. Was it the prep used? Did they all use the same prep? Was it because biopsies were taken? How many biopsies? What if none were taken (it happens)? Were the scopes all done by the same doctor (this is relevant to me because some doctors are more gentle than others and others try to force the scope too much which can damage the intestinal wall)? Were those people on the wrong medication since it states, "Thiopurines (P < 0.001) were protective against increased symptoms."?

I'm going to tag David and see if he has any knowledge on the subject of colonoscopies causing flares in patients with UC (I haven't seen anything that mentions flares for those with Crohn's however). :)
 
Thank you, Jennifer, it would be interesting to learn what other UK-based members have experienced. I don't think I could easily change my GI, on the NHS you basically get what you're given and you're expected to be grateful. On the subject of colonoscopy causing flares, that is the study, but I'm not very scientifically-minded and not in a position to analyse it, you have a lot more knowledge of science than me I think, and I was just mentioning it to try to be helpful to the person who said it had happened to them rather than having any strong views of my own. Though I reckon that stuff could clear drains, let alone cause flares!
 
Hi Lizzie,

I am in the UK. I've had around 6 colonoscopies. the first two I had I didn't remember, but after that I remember them and they were painful although they were all under sedation. I think there's actually two drugs they give you - one that's like a sedative, and one that's a painkiller - but I can't remember the names of them off the top of my head.

I think there's a limit to how much of the sedative they can give you with just the gastro present, without an anaethatist. I had an anaethetist tell me during the summer when I was in for an operation that they sometimes do colonoscopy under deep sedation but that there's a waiting list since they need an anaethetist there. I've not heard of them being offered in the UK with a general anaesthetic, but that doesn't mean it's never done. You could ask?

Once I remember being in the colonoscopy and asking for more drugs because I was in pain and he told me that he couldn't give me any more, I'd already had the limit and I'd had so much he couldn't believe I wasn't asleep. I was like - well I'm not am am?!

Having said all that, it's not unbearable pain for me and I'd still have the colonoscopy if I thought I needed it for a good reason.

You can definitely change your doctor within the NHS. You have the right to treated wherever you want. I changed hospitals as I wasn't happy with were I was. I suppose it might be more tricky to change your consultant within the same hospital, as they all work as part of the same team anyway. It also could be difficult if you are somewhere smaller where there's less choice in hospitals. I live in London so plenty of choice.
 
Thank you for that information - presumably if my GI decides I absolutely must have a colonoscopy then she could organise deep sedation? I think I would give that a go (unless it too could fail due to sheer terror but presumably not?). Say a biopsy was needed, I wonder if there's any less painful way of doing it than colonoscopy?

I don't live in London any more and there are only two hospitals to choose from, and I already use the least worst, I'm afraid!
 
The last couple of times it's been a bit of a fight not to have sedation. I had it once for a gastroscopy, which I had no memory of afterwards. I always wonder if it's just as painful with the sedation but you just don't remember it.
 

valleysangel92

Moderator
Staff member
Hello, sorry for the late reply.

My GI is amazing but is unfortunately going to be way out of your area. The 2 scopes ive had have been under sedation but neither of them have been pleasant Im sorry to say. The first one my memory is a little fuzzy but I know it was very painful. The second I can remember clearly and it was painful and there was an issue with the scope malfunctioning so the whole thing had to be done twice. I have to stress that neither of these were actually performed by my GI as it's not always possible to garuntee a certain person does the scope.

I am due another in the very near future and have been told that this time they will make absolutely sure that I get my gi as patients always report that his procedures are very good and give much more comfort than others.
I have also been told that although they cant promise the sedation will work better this time (it works differently on everyone and i have a condition which has been linked to high tolerance to sedatives )they will do as much as possible to help control my pain and assured me that another scope malfunction is very unlikely. This has all come about through me being brutally honest with them about my experience.

Scopes under anesthesia are rarer in the uk but they do happen. I know of a few people who always get the scopes under GA due to bad past experiences or complex anatomy that makes the procedure more difficult. There will of course be a longer wait as they need a ward bed and an anaesthnatist but it could be worth it if if makes the procedure less stressful.

If your GI isn't willing to listen then of course you can ask to see someone different. That's what I did and it's got me an amazing team that I really trust and feel respected by. You can ask the hospital for a second opinion or you can go to your gp for re-referral. This will usually be within the hospital that you're already attending but if you're really unhappy with the hospital as a whole then you can request to go somewhere else as long as it's within your health board.

Don't be afraid to speak up for yourself. Its hard I know but it's made things so much better for me when I have.

I'm not around very much right now but you are very welcome to inbox me if you have any questions
 
Dunno about catching up on the reading, I seem to recall I was racing up and down stairs more than anything else! I've just done a quick google and found some scientific research by Stacy Menees MD et al entitled "Does colonoscopy cause increased ulcerative colitis symptoms?". The paper is written in very scientific language but the conclusion seems to be that it can do so. The study participants did not have active disease at the time of the colonoscopy, so that seems to rule out them being at the start of a flare before the procedure.
My UC was fully active a month ago when they scoped me.
 
Had my colonoscopy done with no meds today partly because you need someone with you for 24hrs and my soppy Labrador and crabbit westie don,t count and I probably caused some confusion when I said i would just go for it!luckily for me the consultant was fantastic and they used a different camera which a friend of mines company designed which is very slim,no pain,no fuss job done.i watched it on the monitor thought it looked better compared to last Dr thought the same but he let me know it only goes so far.its not a nice procedure but it's done,anyone going through make sure your happy with what's being done.your the boss.good luck all the best
 
I have had 5 scopes in my lifetime and have never had a problem with pain. I am sure it is due to use of propofal as the anesthetic. The level they use here is enough to put you to sleep, barely. I know it is not a deep sleep, and you are aware enough that they can get you to move if needed. I have had the experience of waking up during the colonoscopy. I remember not feeling any pain, but I admit I watched the screen for a minute then I decided to say something. My GI ordered more anesthetic and I was under again.
 
I don, t have a squeamish bone and I chatted to the nurses and Dr,watched the screen,very interesting but the guy who did the procedure was excellent probably helped by the new camera but always go with what your comfortable with.
 
I don, t have a squeamish bone and I chatted to the nurses and Dr,watched the screen,very interesting but the guy who did the procedure was excellent probably helped by the new camera but always go with what your comfortable with.
Yes I found the last one all quite interesting, especially where they were showing me the join from surgery and the small ulcers I now have round the Ileum. I felt pretty stupid being wheeled out of the room and I was saying to the nurses "look I'm fine. I can walk".

I don't have the disease in the colon; I imagine if you have inflammation there it would be a lot more painful. For me it was only mild discomfort. But I remember nearly 20 years ago when I was "diagnosed" with IBS I had what may be a rigid sigmoidoscopy - not sure exactly. There was no prep, or even not eating. It was just the consultant having a look up there with something 9 inches long with a light at the end. And that hurt like hell.
 
I love technology that works and how far it's progessed i know the camera last time was bigger.my friend works for a big defence company that make everything under the the sun submarine periscopes to camera lenses to signalling and camera equipment for railways and had mentioned in the past he,s worked on the design for medical stuff.
 
I wish I never read this thread! It's very useful in terms of information, but I have a sigmoidoscope at the end of the month, and day by day, the more worried I get! Has anybody had a more 'reasonable' trip at all without sedation? I think the only thing I am going to be offered is gas and air at the most.
 
I've had a sigmoidoscopy a month and a half ago and it wasn't that bad. I wasn't sedated, the strange part was when the doctor oiled and fingered my anus before introducing the camera. I was able to look the images on a screen of my insides and he said that the signs of inflammation had almost disappeared, maybe that's why I supported the pain more easily. It's true that he always wants to go a little further, and it 's of course when it's painful but you survive it. Many gases afterwards. I had a colonoscopy two months before that and I don't know what happened at all, so it wasn't a dreadful experience.
 
I've had a sigmoidoscopy a month and a half ago and it wasn't that bad. I wasn't sedated, the strange part was when the doctor oiled and fingered my anus before introducing the camera. I was able to look the images on a screen of my insides and he said that the signs of inflammation had almost disappeared, maybe that's why I supported the pain more easily. It's true that he always wants to go a little further, and it 's of course when it's painful but you survive it. Many gases afterwards. I had a colonoscopy two months before that and I don't know what happened at all, so it wasn't a dreadful experience.
How did you feel after this? I have fissures and inflammation in my rectum, so how do you think they'll deal with this?
 
I've had several and I always go in looking forward to the happy drugs they load me up with. Barely remember a thing which makes me more embarassed about what i might be saying than what they are looking at. My dr lets me see the screen so i think i just ask "what's that? " over and over. And i always seem to all for pictures cuz the gi always insists that it was my request when they hand them to me after. I think having a positive attitude and trust in your dr makes it a better day....

Of course the prep is terrible. They really should give you the happy drugs for that part cuz that's when i really need it.
 
Is general anesthetic an option for you? The two colonoscopies I have had were both done under GA and I didn't feel a thing (obviously). I used to think that was norm until I heard about other people's experiences with the procedure. What are the benefits of not having it done under GA?

Like others, the worst part for me was the prep the day/night before which saw me go to the ER due to intense cramping.
 
I don't know how they deal with fissures. I suppose they will be careful and maybe give you special ointments or painkillers.
Prep is not a good memory, like everyone else it seems.
 

valleysangel92

Moderator
Staff member
Is general anesthetic an option for you? The two colonoscopies I have had were both done under GA and I didn't feel a thing (obviously). I used to think that was norm until I heard about other people's experiences with the procedure. What are the benefits of not having it done under GA?

Like others, the worst part for me was the prep the day/night before which saw me go to the ER due to intense cramping.
The standard procedure varies between different countries and even different hospitals and doctors. In the UK for example, its standard to only have a small amount of sedation and most people can remember the scope afterwards, although different docs use different types and some give more pain meds than others, thus resulting in some people having really good experiences while others have really difficult ones. Plus people have different tolerances to the medications, for example I don't seem very sensitive to them so they don't have a huge effect for me, but other people I've spoken to get really out of it and barely feel a thing.

As for benefits, the patient is able to move on request which makes the procedure easier to perform, there is less risk of perforation when the patient is aware as they can alert the doctor to pain etc, it's safer in general to have mild sedation rather than a GA as a GA carries risks such as severe reactions and breathing problems. In addition, the patient is able to leave the hospital much faster, usually I'm able to leave within an hour after getting to recovery, whereas this would be a minimum of 3-4 hours after a GA in my hospital. The other benefit is shorter waiting times, in order to have a GA you must have an aneasthnatist present, but this is not necessary for mild sedation. In the UK the need for a GA would also usually require admission to a ward, were beds are like gold dust, which again would mean long waits and even the potential to have procedures cancelled at short notice.

While I personally hate being so awake in my scopes, I know they are doing it for a reason and that in the long run its better than waiting up to a year for the facilities to have a GA. For me, improvement of pain management would make the process much more manageable and hopefully this will happen for me with my next scope.
 

my little penguin

Moderator
Staff member
That's the part I don't understand is why they make you wait months for a rush scope in the UK and up to a year for a scope with GA.
My kiddo had a scope in the U.S. in less than 24 hours twice this year alone due to serious concerns with twilight sedation .
If it's urgent but not emergent than the scopes happen in 1-2 weeks once you have a ibd dx.
4-5 weeks wait without an ibd dx.
Are there just a shortage of Gi docs in general in the UK ?
 
The problem is the whole National Health Service runs in a permanent state of being 3 months behind. So nobody gets in quickly as they haven't got to the urgent people from 3 months before.

Having said that I got lucky with a cancellation and had my first scope within 3 weeks of seeing the consultant. But then I had to wait months to see the consultant again, months for a CT Scan, and more months to find out the result. So it took about 9 months in all when really they probably could have done it all in a couple of days.

Perhaps if it wasn't free less people would use it.
 

valleysangel92

Moderator
Staff member
That's the part I don't understand is why they make you wait months for a rush scope in the UK and up to a year for a scope with GA.
My kiddo had a scope in the U.S. in less than 24 hours twice this year alone due to serious concerns with twilight sedation .
If it's urgent but not emergent than the scopes happen in 1-2 weeks once you have a ibd dx.
4-5 weeks wait without an ibd dx.
Are there just a shortage of Gi docs in general in the UK ?

Unfortunately the system is bound by cost and red tape. In my area this is made worse by a lack of facilities, we have 4 units capable of doing it but these cover a very large area, plus the hospitals are split into health boards. You could have 2 hospitals within 5 miles of each other, but if they are on different health boards then they dont share resources. So one could have a 3 month waiting list, and the other a 3 week one, but if your GI is in the one that's 3 months then you have to wait 3 months. If you are waiting for a specific doctor, then again you get a longer wait than if you are happy to have anyone who's qualified. This time my IBD nurse is insisting that my GI be the one to scope me as he runs the center of excellence and therefore can give me a much more comfortable experience, but this will probably bump my wait up as the really good docs are always in demand. It also means theres only one hospital I can go to, so however far behind they are, that's my wait. I think one of the things behind this is that they are obliged to stick by rules that state they must have a certain amount of slots free for in patient emergencies and also for out patient emergencies (people suspected of having cancer or heavy blood loss). Unfortunately, a flare up of a known condition isn't usually classed as an emergency. My IBD nurse requested a scope within 6 weeks, that was 3 weeks ago and I've not heard a peep. I say this to make the point that it's not down to the medics, its red tape. The NHS is covered in it and it seriously winds me up sometimes.

They are understaffed, underfunded, under- rewarded and taken far too much for granted. The NHS is free at the point of use and I will always be very grateful for that as if it wasn't I wouldnt be able to afford treatment and neither would my family, but this does leave it very vulnerable as it is open to misuse and also to large debt that it can't really recover from.

With regard to urgent vs non - in my experience it is usually around 3 months for urgent, 6 for non. There's an extra wait for those with GA as it requires extra cost (remember that red tape), someone to administer the anesthetic, a bed on a ward/ recovery unit for 3-4 hours or so, a pre op assessment etc. This all adds time, and is usually again nothing to do with the medic. In routine surgery like a knee replacement some places in the UK have waits of up to 18 months. Its the underlying management that's a difficulty not the doctors and nurses that we actually see. I remember the frustration of my consultant when I had to wait a week for a scan as an in patient. They want to give us better, but they dont have the resources.

I also think we have a culture of 'well its free we should just take what we get' people are so grateful to recieve the care for no cost that they just take whatever they are given. People have forgotten to be their own advocates. I find things move a lot better when I am honest about how things are affecting me, the more they see into my world the more chance they have of getting me moved up lists. I respect my doctors and my nurses and think they are brilliant, but I also know I need to say so if things aren't right for me. I think if more people were willing to have honest conversations with the people who treat them we would have a better system for all.
 
These are all really interesting posts! I love this forum, I feel so supported just reading the information. I'm in a similar boat myself at the moment, I had a bad experience my first time and my nurse has suggested a colonscopy, however she says if I'm against it I can cancel. I really don't know what to do!
My first time experience involved a call out doctor after I'd had my prep. Then when I went in, I was heavily sedated and don't remember a lot, except for the excruciating pain when they (have no idea of the technical term) blew the air into my intestines. Is that a normal colonscopy? They told me they needed to blow air into them to blow them up so they could see better, is that right? It was ten years ago now. Everything else went fine, my Doctor was amazing and I'm so thankful I have him. But it makes my heart pound when I think about going again. Another worry I have is because of the slight increased risk of cancers, then I feel I ought to go for the colonscopy to check anything out like that, would the colonscopy do that? Oh I'm sorry to jump on board but I'm worrying and in a predicament as to what to do also.
 
Hi Daytripper. I think it's normal to blow air into the colon to open it so they can see what they're doing and to send the camera up without causing damage to the walls of the bowel (though of course I'm no expert, only having had the one colonoscopy). They are definitely a good thing from the point of view of cancer prevention, and as I think someone pointed out in this thread, biopsies can be taken there and then of anything at all suspicious, like polyps for example. The problem with the CT scan that I had instead, being too scared to have a colonoscopy again, is that biopsies can't be taken as it's basically X rays, there's no little knife wending its way through your innards! At least I imagine it's a little knife, no idea really.
 
Thanks Lizzie. If you don't mind me asking, what is the CT scan and what does it involve, and other than the biopsy drawback, are there any other major differences between that and a colonoscopy? I feel like you, and too scared to go for the procedure again! It's like I have an angel and a devil on my shoulder telling me what to do! I have rang my nurse so that I can have a little chat with her about it too as we are currently communicating through voicemails!

Would they let you take headphones into the procedure does anybody know? I'm wondering if a little bit of guided meditation would help me.
 
I'm not certain about the diagnostic differences between the two, possibly similar except for the biopsy bit, and maybe the CT scan can show more of the small intestine, but maybe someone can correct me if I'm wrong there. In terms of the experience, there's no comparison, as apart from the canula being inserted into your arm - which is scary if you're frightened of needles, though I was given numbing cream which helped with pain - a CT scan doesn't hurt at all. There was no laxative needed in my case and when they put the dye into your vein it was actually a really nice feeling. You just lie down and go in and out of a very hi-tech looking doughnut shaped ring, hold your breath when the machine tells you to, and then it's over. The frightening bit was when I googled how much radiation a CT scan subjects you to and the increased risk of cancer! To be honest, I think that because of the radiation worry it might be better to have the colonoscopy if recommended but I just didn't dare.

Re headphones, I don't know, but they do need you to hear what they're saying to you during the colonoscopy so that you can turn onto your side etc when instructed.

Dunno about meditation, the only thing that would induce me to have a colonoscopy once more would be full-on knockout anaesthesia!
 
Thanks so much for your reply. Hmm yeah I know what you mean about the radiation of the CT scan.....I'm really unsure of what to do! I always thought when I was really ill then I would go for the colonoscopy, but I'm wondering if while I'm slightly flaring but still not bad then that's a better time to have one because it's not so much to contend with. I really don't know! I've talked to my mum and dad and they think the procedure should be better than it was ten years ago, but I don't think it will be- I really think it will be just the same. I'm wondering if I can do the swallowing the camera thing?
Yeah, I think I would take the anaesthesia over mediation any day!!
Thanks for all your advice ☺
 
I had my colonoscopy four years ago, just for information. Sorry I've been so negative about it all; I wish I were not such a coward, and I would probably be in better health by now if I had followed my GI's advice. I was also too anti-medication, wouldn't take steroids for fear of the side-effects until I was absolutely forced by agonising pain and dire ill-health very recently. Lots of people have colonoscopies and it doesn't bother them at all - so much seems to depend on the quality of sedation as well as one's own personal pain threshold or lack of. So please don't pay too much attention to my views, I am a doctor's worst nightmare and it hasn't done me any good at all to be that way.

PS I think the swallowing a camera thing is for the upper tract, though it might meet in the middle, not sure at all.
 
No it's all brilliant advice, I love to have views and opinions from all different sides, you may think you're being negative but I just see it as another point of view. Thanks so much for your time and advice- I'm going to have a meeting with my nurse in a week, she says there is a hospital that's close to me that does the camera thing but first we are going to discuss what's needed. Thanks for all your help xoxo
 
My disease has not been found but once during a colonoscopy other times its been an upper GI and CT scan. So yes we need them but, I guess the best reason is that we have a bigger chance of colon cancer. That being said its a horrible procedure.


Lauren
 
My disease has not been found but once during a colonoscopy other times its been an upper GI and CT scan. So yes we need them but, I guess the best reason is that we have a bigger chance of colon cancer. That being said its a horrible procedure.


Lauren
Yes
 
Yes, I understand that a colonoscopy would be useful but I just daren't undergo it again without general anaesthetic. I'm waiting to hear whether this will be possible (put in my request nearly a fortnight ago but apparently my GI consultant has been away and only got back today - I wish someone had bothered to let me know as every day I've been hoping to hear from the hospital).
 
I can now understand why there have been some mixed reviews on this thread now! Lizzie, I too would probably not go and have another without any anaesthetic. It wasn't generally that painful all the time, it was just uncomfortable for the majority of it. But, I blacked out walking across the ward afterwards, leaving the nurses perplexed. I do not want to repeat that again! I felt pathetic!
 
Good luck with your appointment Lizzie. I suppose it's possible that she might still agree but knows the wait will be longer so wants to see you in clinic first. At least you now have the chance to speak to her directly to explain how you feel about it, and to discuss the other aspects of your treatment, following your MRI.
 
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