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  • Colonoscopy/Crohn's/Colitis Scare

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    Old 11-18-2003, 02:08 PM   #1
    gillian30
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    Unhappy Colonoscopy/Crohn's/Colitis Scare

    I'm a 30 year old female recently diagnosed with an intestinal disorder called Celiac Disease. The treatment for Celiac is a gluten-free diet, which I've now been on for 3 months. Because I'm no better, and still have stomach pain in the area of my small bowel, my doctor has now suggested a colonoscopy to look for Crohn's and colitis. This has me sooo worried, because I do not handle medical procedures well...I become very, very nervous about the sedation and the possible after-effects of such a procedure such as bleeding. My nerves have so far kept me from scheduling this.

    I'm also extremely worried about the possible diagnosis of Crohn's or colitis. My understanding of these conditions are that they are terminal. I still haven't come to accept the initial diagnosis of Celiac (not terminal, as long as the strict gluten-free diet is followed) and fear I cannot hear this possible awful news. Could those of you who have a colonoscopy please tell me the details of the procedure, what to expect, and how it feels during the prep and the after-effects? Knowing more may put me at ease. I'd also love to hear from any Crohn's or colitis patients. Thanks in advance.

     
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    Old 11-18-2003, 03:23 PM   #2
    Divermon
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    I can tell you about the experience as my Wife described it (I have to try the experience). I was there all through it.

    The started an IV. The needles nowdays are much thinner that before, so it didn't hurt that much, she said, but I think that was about the worst part. I think if you keep yourself hydrated, it makes the veins more prominant, and easier to get the IV in. Then they put some sedation into the mix, and she almost unnoticably drifted off. Then she woke up, drifting in and out of sleep, just like a lazy Saturday morning. I let her sleep as long as she wanted to. Then we went home.

    Now, of course, from my perspective, I saw her being weeled out of the room, and back in again, and time passing, etc. But she didn't.

    She did say that for about a week afterward, her lower digestive system didn't feel quite right, like maybe a bit bloated or something. I think they blow some air in there, as they go.

    She would tell you though, that the absolutely worst part of it all, was the afternoon before. She had to sit on the toilet, and drink about a quart of this stuff called "Go Lightly". She just didn't care for the taste, but not like a gag-ing taste. I think mostly, she just hated sitting there, drinking and going, drinking and going.... you get the, um, picture. She put a movie in the portable TV... that was a good idea.

    Ok, so overall, not a bad experience. I think I would be fairly relaxed going into it, myself. I'm sure other people here will have variant experiences.

    As far as the disorders you are trying to rule out... I know nothing about them, but is anything actually allways terminal?... usually not.... and often the factor is catching it early. Much better, I think, to know, accept and manage, rather than worry yourself about something you may or may not have. And this seems to me, a small price to pay to find out.

    Last edited by Divermon; 11-18-2003 at 03:26 PM.

     
    Old 11-19-2003, 12:18 PM   #3
    gillian30
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    Thanks for the replies. I'm still nervous but will schedule the colonoscopy soon. I hate the thought of such a long fast...when you're already feeling ill, there's nothing worse than not eating.
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    Old 12-01-2003, 06:26 PM   #4
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    Re: Colonoscopy/Crohn's/Colitis Scare

    Hello,

    I have lived with UC for 4 years now. While Crohn's/UC can be most unpleasant, it is not considered a terminal disease. IBD sufferers have a somewhat elevated risk of cancer, but it is not imminent. Get that colonoscopy! While not a pleasant proceedure, I'd sure pick another scope over something like a root canal. Good luck.

     
    Old 12-02-2003, 11:27 AM   #5
    gillian30
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    Re: Colonoscopy/Crohn's/Colitis Scare

    Could you tell me which part of the procedure was the worst? My fears pretty much revolve around being heavily sedated, and then the possibility of bleeding internally afterwards. I've heard there's not much discomfort during the actual exam, is that true?
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    Old 12-02-2003, 12:04 PM   #6
    mike90667
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    Re: Colonoscopy/Crohn's/Colitis Scare

    Quote:
    Originally Posted by gillian30
    Could you tell me which part of the procedure was the worst? My fears pretty much revolve around being heavily sedated, and then the possibility of bleeding internally afterwards. I've heard there's not much discomfort during the actual exam, is that true?
    By what I've heard, a 36 - 48 hour fast isn't universally the done thing, it was in my case. That was easily the worst part for me, the laxatives were strong, and trying to make myself take the second (of two doses) dose took a good bit of mental persuasion :-(

    Internal bleeding - they may have warned me, I don't remember, so if the warning was that seriously put I would have remembered it. The two reasons I can think in which a slight amount of internal bleeding (ie. you'd notice a little after no.2 on first wipe) is if/when they take a biopsy, and if the back passage is fragile. I seriously think that internal bleeding is the least of your worries.

    (Anyone correct me if I'm wrong, but I'm fairly sure I'm right about this) The colonoscopy consists of a flexible tube (with a tiny camera inside/the end) being inserted in the back passage. I was sedated, I was conscious at the time, I could hear people talking faintly, (I had my eyes closed because I'm a complete pansy when it comes to anything medical :-)) but not aware of anything going on with my body. They then examine the large bowel for anything dodgy, typically ulceration in the case of Crohn's/UC. If they find anything, a biopsy is taken. Now consider that the intestines aren't things to be heavily messed with, so the biopsy sample is going to be the smallest they can take. However, it could be from an ulcer that they take it from, and ulcers typically hurt. Again, I was under sedation, I felt pain for an instant, but then I was back to my own thoughts like nothing had happened.

    The thing I find very odd is that I was given more sedation for the endoscopy than the colonoscopy. I remember nothing from the endoscopy after the sedation injection.

    One thing to note is that I'm fairly sure the primary reason I was sedated was because my back passage at the time was very fragile and painful, plus I'm a complete pansy wrt medical stuff.

    Another thing to note is that for Crohn's/UC, it is pretty much the definitive test for it. It's not a waste of your time. I was diagnosed after the colonoscopy, but they did a minor test or two to confirm that it was Crohn's and not UC (because they're similiar from the point of view of that test). IIRC the treatments are the same for the two diseases.

    I can't speak much for UC, but Crohn's is termed as "chronic" not "terminal". Chronic meaning you can get repeat "attacks" of it throughout your life, more or less severe than the previous. Terminal meaning that you'll eventually die of that disease. The doctors I talked to said there's about a third chance you'll never experience another attack, a third that you'll have another attack but treatable through drugs only, and a third that you'll have another attack and require surgery. Surgery can't cure the disease, it can still attack again afterwards, same chances as before the surgery, unless you've got a very specific and unusual case.

     
    Old 12-02-2003, 02:46 PM   #7
    gillian30
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    Re: Colonoscopy/Crohn's/Colitis Scare

    Thanks for filling me in on that. So I guess the prep and the diahrea are the worst part. I'm just wondering what people mean when they say they had really bad diahrea. Is that literally being in the bathroom for hours at a time and having very painful stomach sensations, or is it more or less just annoying to keep running to the bathroom every few hours? I've had an endoscopy, but am so much more nervous about the colonoscopy. Also I'm wondering what an "attack" of Crohn's or colitis feels like, because I'd like to compare it to my own ongoing symptoms and see if there's a similarity. I have Celiac Disease and know that my small intestine is very badly damaged, but I have been on a strict gluten-free diet for 4 months now and am not any better, with the exception of gaining about 13 lbs. that I really needed to gain. I'm having perisistent cramping and painful feelings in my lower stomach, around both sides of the belly button region, and just feel like I'm swollen inside all the time. This is why my doctor wants to check me for Crohn's and colitis. My bowel movements are very soft but otherise relatively normal. Does any of this sound like an "attack" of something like Crohn's or colitis?

     
    Old 12-03-2003, 07:24 AM   #8
    mike90667
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    Re: Colonoscopy/Crohn's/Colitis Scare

    Quote:
    Originally Posted by gillian30
    Thanks for filling me in on that. So I guess the prep and the diahrea are the worst part. I'm just wondering what people mean when they say they had really bad diahrea. Is that literally being in the bathroom for hours at a time and having very painful stomach sensations, or is it more or less just annoying to keep running to the bathroom every few hours?
    I had bad stomach pains, worse than I had otherwise perhaps, I think hunger pangs but made worse by the ulceration. At the time going for a no.2 was painful anyway, and going often made it worse. Frequent, unexpected, urgent visits (but short) that pretty much go away when anything at all that can be got rid of has been. If you're staying in hospital for the duration, bring some comfortable toilet roll. It's an absolute godsend :-)

    Quote:
    I've had an endoscopy, but am so much more nervous about the colonoscopy.
    Mainly the prep, IMO.
    Quote:
    Also I'm wondering what an "attack" of Crohn's or colitis feels like, because I'd like to compare it to my own ongoing symptoms and see if there's a similarity.
    One issue here is I have no idea how bad my attack was relative to other Crohn's sufferers. I was told by the doctors it was "moderate", but what the heck does that mean without some kind of yardstick for me to compare it to. I think my symptoms should have been mild, but made much worse because it was left untreated for quite a while (though I've heard much worse stories about how long it was left untreated).

    The pains I got were pretty much equally distributed below ribcage and between the hips. Long, drawn out dull aching pains that would go on for long periods of time (like an hour or so), then stop for a while, maybe a few hours and start up again. Pains were usually during a significant meal, again about 20 minutes afterwards (meals took a while for me to eat - like an hour - because my small intestine was inflamed, so the food takes longer to get through the smaller space available, and also aggrivates the inflamed area a bit I think), then maybe an hour or two after that. I never felt a positive desire to eat, instead of feeling peckish or hungry, I would just feel pain. I've heard the pain described almost like someone is pulling on your intestines, a dragging feeling, but that kind of thing is difficult to relate, though I'm inclined to agree with the description. I also got rear end pains (reason described in previous post), diarrhoea all the time, it felt like it was burning. My doctor put me on codeine phosphate before the diagnosis, which basically shuts the gut down for a while.

    The web address I have previously posted on this thread describes the issues I had with food.

    Quote:
    I have Celiac Disease and know that my small intestine is very badly damaged, but I have been on a strict gluten-free diet for 4 months now and am not any better, with the exception of gaining about 13 lbs. that I really needed to gain. I'm having perisistent cramping and painful feelings in my lower stomach, around both sides of the belly button region, and just feel like I'm swollen inside all the time. This is why my doctor wants to check me for Crohn's and colitis. My bowel movements are very soft but otherise relatively normal. Does any of this sound like an "attack" of something like Crohn's or colitis?
    It sounds approximately right, if it also tallies in approximately with what I've said (re: long drawn out achy pains). I remember temporary feelings of bloatedness as well.

     
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