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Crohn's Disease Forum » General IBD Discussion » Painful and Unsuccessful Colonoscopy - What does this mean...?


03-22-2013, 03:57 PM   #1
Everly
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Painful and Unsuccessful Colonoscopy - What does this mean...?

Hello everyone,

I'm really depressed right now and feeling hopeless. I was scheduled for a colonoscopy today and after drinking all of the prep and going an entire two days without eating (I threw up some of the prep, too), they brought me in, hooked me up to everything that they needed to, and brought me into the room.

but...they couldn't even get halfway up my colon because I was in so much pain. Apparently I was yelling that it hurt and they kept uping the sedative...but...they reached the limit to how much they could give me and I was still in a lot of pain. They said everything at the spots they could see looked normal...but...I'm still really, really upset that they couldn't continue...I don't wanna do the prep again...and they said if I DO have to do it again...they'll have to knock me out completely...I cried the entire ride home. I went through all of that for nothing... They said that a lot of times that happens the patient's intestines are inflamed...and they said it's very much likely IBS?! I'm really doubting them saying that what I'm going through is simply IBS...because I'm still in pain all of the time and constantly wake up at night from the pain.

Ugh..has this ever happened to anyone? He hardly got up through my colon at all, he only reached about 1/4th of it before they had to stop...I'm just really depressed right now...
03-22-2013, 04:24 PM   #2
Johnnysmom
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For both my scope and my son's scope we were completely knocked out so we didn't feel anything. I know you don't want the Dr to forcefully go somewhere during the scope because they can do serious damage to your colon. I have not heard of inflammation bad enough to prevent the scope from something like IBS. Did they do an endoscopy (scope through your mouth down to your upper GI tract)? If you are still having pain the issue might be there. It could also be in an area the scope won't reach, in which case you would need and MRI or MRE to scan those areas for inflammation or blockage.

Have they done any blood tests? You would want them to check your CRP and SED rate. They can also do a Fecal calprotectin test which would show inflammation that is in your digestive tract.

I think you need to have a conversation with your GI doctor and make sure you understand what they have done and what they have ruled out so far.

HOpe you get some answers soon. ((((Hugs)))))
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03-22-2013, 04:25 PM   #3
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I'm sorry Everly. D: Do you remember the pain? From your post it doesn't sound like you do. Did they not take any biopsies at all? Even if the tissue does look normal taking biopsies can help with a diagnosis (Granulomas are only found with a biopsy. The biopsy could also show inflammation).

With IBS only microscopic inflammation has been found in some patients so I wouldn't be happy with them saying its just IBS either.

If possible could you try getting a second opinion from another GI? Usually GIs don't stop a scope with a patient who's been sedated unless they felt that you weren't fully out of it. Yet even then some still continue the procedure but will usually stop if they can't get the scope through a narrowed area. Either way there's no reason to have a scope without having biopsies taken. That's the whole point of this invasive procedure otherwise you might as well have an MRI or pill cam etc. A diagnosis for IBD needs biopsies.

You will likely have to do the test again at some point and yes the prep is terrible. Best prep I've ever used was Suprep. http://www.suprepkit.com/ Its very easy to get down and there's very little prep to actually drink. I only had one cup (their cup is 16oz I believe) and that cleaned me out completely (it mentions to drink one prep the night before and one the day of but there's no need to drink more if you're already running clear). I was able to sip on other drinks for the rest of the night. I've also vomited with those other preps where you have to drink a gallon or so. Those ones aren't easy. I highly recommend Suprep. Its important to hydrate with preps like this one so in the instructions it says to drink two 16oz glasses of water at least by an hour after finishing the prep. I felt a little full but that full feeling didn't last long and definitely didn't turn into vomiting like the other preps had before.
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03-22-2013, 04:30 PM   #4
Everly
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For both my scope and my son's scope we were completely knocked out so we didn't feel anything. I know you don't want the Dr to forcefully go somewhere during the scope because they can do serious damage to your colon. I have not heard of inflammation bad enough to prevent the scope from something like IBS. Did they do an endoscopy (scope through your mouth down to your upper GI tract)? If you are still having pain the issue might be there. It could also be in an area the scope won't reach, in which case you would need and MRI or MRE to scan those areas for inflammation or blockage.

Have they done any blood tests? You would want them to check your CRP and SED rate. They can also do a Fecal calprotectin test which would show inflammation that is in your digestive tract.

I think you need to have a conversation with your GI doctor and make sure you understand what they have done and what they have ruled out so far.

HOpe you get some answers soon. ((((Hugs)))))
Yes I've had an endoscopy and everything was normal. I didn't wake up from the pain, either. I don't remember any pain from that procedure at all.

They've done blood tests and my SED rate was elevated and I had a positive ANA testing.

And thank you...
03-22-2013, 04:35 PM   #5
Everly
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I'm sorry Everly. D: Do you remember the pain? From your post it doesn't sound like you do. Did they not take any biopsies at all? Even if the tissue does look normal taking biopsies can help with a diagnosis (Granulomas are only found with a biopsy. The biopsy could also show inflammation).

With IBS only microscopic inflammation has been found in some patients so I wouldn't be happy with them saying its just IBS either.

If possible could you try getting a second opinion from another GI? Usually GIs don't stop a scope with a patient who's been sedated unless they felt that you weren't fully out of it. Yet even then some still continue the procedure but will usually stop if they can't get the scope through a narrowed area. Either way there's no reason to have a scope without having biopsies taken. That's the whole point of this invasive procedure otherwise you might as well have an MRI or pill cam etc. A diagnosis for IBD needs biopsies.

You will likely have to do the test again at some point and yes the prep is terrible. Best prep I've ever used was Suprep. http://www.suprepkit.com/ Its very easy to get down and there's very little prep to actually drink. I only had one cup (their cup is 16oz I believe) and that cleaned me out completely (it mentions to drink one prep the night before and one the day of but there's no need to drink more if you're already running clear). I was able to sip on other drinks for the rest of the night. I've also vomited with those other preps where you have to drink a gallon or so. Those ones aren't easy. I highly recommend Suprep. Its important to hydrate with preps like this one so in the instructions it says to drink two 16oz glasses of water at least by an hour after finishing the prep. I felt a little full but that full feeling didn't last long and definitely didn't turn into vomiting like the other preps had before.
I'm still in pain from where the scope went up to in my colon, which wasn't very far...and I have no appetite at all. But, that could be tied with my depression right now, as well.

Thank you for the support and advice. I very vaguely remember the pain, but I'm sure during the procedure I was nearly sobbing. I probably will go somewhere else after this, because the clinic I'm going to right now..everyone keeps suggesting IBS...and I'm not very happy with that suggestion.
03-22-2013, 07:20 PM   #6
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Ohh Everly, I am so sorry for your experince. You know, I had a colonoscopy back 8 and half years ago, this was before I was even having any lower intestinal issues. It was a case of I had an over-zealous doctor who was test happy! Anyhow, I will tell you this, I woke up crying and I know it hurt! The procedure can be really painful for some.... I mean they are shoving a hose up there are have to make all kinds of twists and turns, it is painful for even the normal person sometimes. My mom had it done without any anesthesia and she said it was god awful painful and she had no issues at the time either, she was having it done due to age. You know, I will likley have to have one done soon too. I was thinking about asking to be completely knocked out, but then I am a bit scared to because I think it is important for them to know if they are causing you pain so they will stop. I am still trying to debate what I will do when that time comes though. But I am so sorry you went through all that and I really understand how horrible it is to have drank all that crap and suffer like that for nothing. Well, at least they got a little look inside. Wish I had more words to make you feel better. Big Hugs to you....







Hello everyone,

I'm really depressed right now and feeling hopeless. I was scheduled for a colonoscopy today and after drinking all of the prep and going an entire two days without eating (I threw up some of the prep, too), they brought me in, hooked me up to everything that they needed to, and brought me into the room.

but...they couldn't even get halfway up my colon because I was in so much pain. Apparently I was yelling that it hurt and they kept uping the sedative...but...they reached the limit to how much they could give me and I was still in a lot of pain. They said everything at the spots they could see looked normal...but...I'm still really, really upset that they couldn't continue...I don't wanna do the prep again...and they said if I DO have to do it again...they'll have to knock me out completely...I cried the entire ride home. I went through all of that for nothing... They said that a lot of times that happens the patient's intestines are inflamed...and they said it's very much likely IBS?! I'm really doubting them saying that what I'm going through is simply IBS...because I'm still in pain all of the time and constantly wake up at night from the pain.

Ugh..has this ever happened to anyone? He hardly got up through my colon at all, he only reached about 1/4th of it before they had to stop...I'm just really depressed right now...
03-22-2013, 10:33 PM   #7
Everly
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Ihurt, thank you for your support. And I'm sorry to hear that you'll have to go through another one as well soon. Everyone has different experiences, and I'm extremely tiny, it could have been hurting me just because of my size. But they said that my colon was probably inflamed from 'IBS' and anxiety, and I'm not following that train of thought.
03-23-2013, 09:45 AM   #8
Cat-a-Tonic
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IBS does not cause inflammation (some doctors think it might cause very mild inflammation, but not all doctors agree with that). If there's enough inflammation that it was causing you that level of pain and they couldn't get the scope in further, then it certainly doesn't sound like IBS to me. I agree that getting a second opinion is a good idea. I really hope you can get this stuff figured out soon, I know you're suffering. Hang in there!
03-23-2013, 10:10 AM   #9
Ihurt
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I am guessing they said your colon was inflammed from IBS because IBS can and does cause microscopic inflmmation of the colon and intestines. It just means there is minor inflammation that is not visible. Now saying you it was more painful due to anxiety, sorry that sounds like a load of crap! I had NO anxiety when I had my first scope 8 years ago really, I mean I was a bit nervous as anyone is before undergoing a procedure, but nothing out of the ordinary. It was painful for me, and I did not even have any IBS or issue at all at the time really. THere is one other thing. I was told by my gastro doc that people with IBS and IBD can have something called visceral pain. He said the nerves in the intestines fire off when they should not and it can cause pretty bad pain in the intestines and gut. Just thinking maybe that is what he thought. Again I am so sorry you went through all that..






Ihurt, thank you for your support. And I'm sorry to hear that you'll have to go through another one as well soon. Everyone has different experiences, and I'm extremely tiny, it could have been hurting me just because of my size. But they said that my colon was probably inflamed from 'IBS' and anxiety, and I'm not following that train of thought.
03-23-2013, 12:30 PM   #10
Everly
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Cat-a-Tonic, thank you for the reply. The strange thing is, I don't remember any pain or me yelling. The whole thing to me is just odd. Can a good amount of inflammation be present even if the picture they took doesn't show so?

Ihurt, that's what I said. Everyone's worried about the procedure that hasn't done it before, and I was just as scared when I had my endoscopy! I didn't have any difference in 'anxiety' for either of them. Everywhere around my bellybutton has been extremely sensitive to touch for the last month, and I don't know if it's a good idea for a doctor to set that up when I'm constantly in pain anyways? The whole thing is just very confusing to me.
03-23-2013, 02:58 PM   #11
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i thought everyone was put completely under anesthesia.
so thats news to me.
03-23-2013, 04:44 PM   #12
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Wildbill, here in the US you normally get "twilight sedation" which knocks you most of the way out but you can still respond to commands (like if your doctor tells you to lie on your side, etc). You don't remember any of it though and it feels like you were knocked all the way out. I've had 3 scopes and don't remember any of them but I had sedation for all 3, not anesthesia.

Everly, it's complicated. You can have mild inflammation that causes terrible pain. You may even have something like microscopic colitis, which is in the IBD family - it only causes inflammation on a microscopic level, so everything looks normal, but it can cause awful pain & symptoms. And conversely, sometimes people who are terribly inflamed don't get much in the way of symptoms. Usually symptoms correlate to inflammation but not always. For what it's worth, I'm the same way. When I had my colonoscopy, it looked perfect and pristine. But I felt awful going into it and awful afterwards. It just didn't add up for me. As a result I'm still somewhat of a mystery to my doctors - they think I have IBD, and I respond well to IBD treatments, but I still don't have a firm diagnosis.
03-26-2013, 05:12 PM   #13
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Hi again, everyone.

Since my colonoscopy, I've had a pain in my left side and it hasn't gone away yet...has anyone else had this before as well? It's not unbearable...but, it's the same pain I had when I first got all of these symptoms. A lower left quadrant pain. Nothing I do helps...
03-26-2013, 05:18 PM   #14
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I would get knock out complete and have test done again. Good luck,
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04-07-2013, 05:10 PM   #15
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I had my first colonoscopy a few days ago and I know many people have the procedure, whilst not pleasant often not really problematic and I do not want to put others off who may be reading and are awaiting their first as obviously in some cases the consequences of not having one done can be far far worse and the C-scope experience varies considerably from person to person it seems.

My introduction to colonoscopy though was pretty horrible. The prep, which many seem to think the worst part, I got through with abdominal cramps not really any worse than I'd sometimes had anyway and thought well if that's the worst of it hallelujah ... but uh no. the scope was way worse and my pain threshold is not actually particularly low.
They were reluctant to give me sedation because I'm a home carer and they were concerned about the monitoring of me should I need it, but they did give me an IV tap in case I desperately needed it and I was given Entonox - gas and air instead, but I did not find it that effective and it was more a case of using the inhalator as something to bite!
I did not have any sedation throughout, but had the procedure lasted longer I would likely have requested it and should I need another colonoscopy then I will request sedation from the offset.

I do not know why my experience was so painful, I was nervous about the procedure but not extremely so (but would be more so in advance of another - I've even had recurring dreams about it in the few nights since!) And I'm not a 'wuss' or whatever.
I'm not convinced that the 'scope-driver' working on me was that skilled - the scope came out at one point, through no fault of mine, and not from close to the entrance either and had to be re-inserted. The bends and the small intestine especially were for me the most painful parts.

But the visual results came back as 'normal' so still on my 20 odd year long diagnosis of IBS - but awaiting biopsy results. Confusing as I was led to believe there was no bleeding with IBS and that with IBS, Calprotectin test results should be between 0 to 50, mine were just below 300. Also recently had increases in other odd symptoms, which I somehow feel are associated to my guts (but haven't had doctors confirm they are, so I don't know) so it's pretty frustrating and confusing.
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