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10-01-2015, 07:58 AM   #1
Lizzie
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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.
10-01-2015, 08:30 AM   #2
Bunty
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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.
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10-01-2015, 08:43 AM   #3
The Real MC
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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.
10-01-2015, 09:25 AM   #4
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Mine is much better since they out me to sleep .

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10-01-2015, 11:46 AM   #5
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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!
10-01-2015, 12:55 PM   #6
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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..."
10-02-2015, 12:19 PM   #7
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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!
10-02-2015, 12:55 PM   #8
FrozenGirl
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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.
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10-02-2015, 12:58 PM   #9
ronroush7
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The first few times I could still feel them moving around so I asked to be put under.

10-03-2015, 10:13 AM   #10
Axelfl3333
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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
10-03-2015, 10:16 AM   #11
ronroush7
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Best to you.

10-03-2015, 11:48 AM   #12
Om3ga1
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Had several done and never had a problem.
10-03-2015, 11:51 AM   #13
Lizzie
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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!
10-03-2015, 12:09 PM   #14
Om3ga1
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I thought it was an established fact that bowel prep can cause flares?
Never heard of that. It does however give you time to catch up on your reading.
10-03-2015, 01:31 PM   #15
Lizzie
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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.
10-03-2015, 01:47 PM   #16
Jennifer
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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.
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10-03-2015, 01:47 PM   #17
Bunty
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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
10-03-2015, 02:04 PM   #18
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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).
10-03-2015, 03:18 PM   #19
Lizzie
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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!
10-03-2015, 07:48 PM   #20
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I don't remember mine, but my GI said I was freaking out.
10-04-2015, 03:57 PM   #21
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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.
10-04-2015, 04:47 PM   #22
Lizzie
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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!
10-05-2015, 09:11 AM   #23
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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.
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10-05-2015, 11:49 AM   #24
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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
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10-05-2015, 05:12 PM   #25
Om3ga1
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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.
10-05-2015, 05:51 PM   #26
Axelfl3333
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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
10-05-2015, 06:42 PM   #27
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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.
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10-06-2015, 04:57 AM   #28
Axelfl3333
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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.
10-06-2015, 05:29 AM   #29
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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.
10-07-2015, 04:12 AM   #30
Axelfl3333
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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.
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