Colonoscopy Next Friday, I'm so scared!

[Ihurt]

Hey everyone,

Well, as many of you all know, I have been having issues with severe intestinal pain now for 2 years. I have had a few tests ( MRE of small bowel, CT, blood work, stool tests). Have not done a colonoscopy due to my other health issues. It will likley complicate things. I have interstitial Cystitis of the bladder and am VERY prone to getting UTI's. When I get diarrhea, I usually will get a UTI. Well with the colonoscopy prep, well I am going to get massive explosive diarraha which I am sure may cause a UTI, but also drinking that stuff may in all likelyhood irritate the hell out of my bladder.

Well, I went to see my gastro doc today and told him how much worse I am feeling. I mean I have pain ALL the time now in my intestines. It is severe a lot of the times. I also have spotted a small amount of blood in my stool 4 times in the last month and half. I mean honestly I dont thinnk the gastro wanted to do the scope since he knows of all the risks and I am fragile with all the other issues I deal with. But I guess he thinks we should look just to be sure. I think he keeps thinking he is not going to see anything. He thinks I have IBS. He did seem a tiny bit concerned about the blood though, but he said it is probably a hemmhroid. But he did say since this was going on and just me not knowing for sure what is happening, that maybe it would be good to make sure.

Here is my fears with the test. I have been on low dose antibiotics for 5 years now to help prevent the nasty UTI's I get due to the Interstitial cystitis of the bladder I have. Well with the colon prep, it washes out a lot of the gut flora. Well my gut flora is already compomised from being on low dose antibiotics for so long, I am sure. I was on kefelx for 4 and half years and now augmentin low dose for the last 4 months. It is the only thing that helps my bladder pain and keeps the infections away. I do take probiotics ( 50 billion by renew life and I also take Floratsor which is S Buallardi). I hope that is eough to prevent me from getting C-diff due to the whole prep thing and from the colonoscopy wiping out my good gut flora.

Has anyone else on here had a colonoscopy and been on antibitoics for a long period of time?? I mean did you do ok afterwards?? I am just very scared about it. I mean one part of me does not want to do the scope because of this, and for the fact that I have a good chance of getting a UTI and will then require Large doses of antibiotics after the whole prep thing. That will also not be good, especially after clearing out my gut flora.. Also I have read online that you can pick up C-diff from the scopes since they cannot really sanitize them well due to risk of hurting the camera. I mean I know that I need to figure out what is going on here. Being in pain for 2 years and not really knowing what is going on. I think the antibiotics are likley what has caused all this intestinal issues. I asked my gastro doc and he said the low dose antibitoic may or may not have anything to do with my intestinal pain, there is no way to know. I mean having horrid pain ALL the time that seems to have gotten worse in the last couple months, and seeing tiny amounts of blood in my stool 4 times, I feel I need to know what is happening...

What do you all think? I am so scared.... I mean what if I have C-diff right now?? I mean I dont have water dierraha though, I have more hard rock poops mixed with softer stool. Does C-diff usually cause a lot of diarrheaha? I was tested for it about a year ago when I was having issues and it was negative. I though the gastro said C-diff presents itself with severe watery diarreha. I just wonder if one could have it and it be slightly masked and not causing diarrhea if one is taking high doses of probitoics..

Sorry for rambling on, I am just so worried and pray to GOD I am making the right decision on the colonosocpy....

 

[peppergirl]

Hello Ihurt

I have had two colonoscopies. The first one was done at one hospital in a nearby city as it was the quickest to get into. The prep was horrible but didn't cause any problems. I was actually sedated and did not feel a thing at all. Woke up feeling okay and ready to eat!

The second time was when I was in the hospital and while they gave me some sedation, I was awake through the whole thing and it was kind of painful. That could be because my rectum was very diseased with the crohns and was just before they decided to do the removal of my large intestine surgery. The prep before was better than the first as I didn't have to drink as much of the prep and it was not as chalky, still not good though.

Ask your doctor if you can be sedated and what is the least amount of the prep that you can take and still be okay for the scope.

Good luck and keep us posted

 

[Ihurt]

Thanks for the reply. I think they use twilight sedation where they knock you out partially, like you are not suppose to remember the procedure.

I am just worried about getting C-diff or something since I have been on low dose antibiotics for a long period of time since the prep compromises your good gut flora. I do take probiotics already, but I wonder if they are really potent enough to prevent C-diff...

 

[AlliRuns]

I remember everything from my colonoscopy! They weren't very generous with the sedation. Endoscopy on the other hand, my usual doc did that one, and he gave me lots and I didn't remember anything.
I watched my entire colonoscopy on the screen though.

 

[shamrock15]

Your doctors can do a test for C diff - I believe it is a culture that they do from a swab, and they can do that easily enough during the procedure. Just ask them when they set up. I don't think you are at any risk from the procedure though. The prep, while not pleasant, should only flush out all the flora and if you are keeping up your probiotics, you shouldn't really get anything untoward establishing afterwards. Given the other symptoms you have mentioned previously, the scope is the right thing to do. Hopefully the scope will give you some peace of mind through a diagnosis.

 

[Ihurt]

Alliruns: How awful for you. I told my gastro that I wanted to be sedated. He said he would, not to worry. I do NOT want to see my colon on a screen really. I had a colonoscopy 9 years ago( before I had IC bladder and all this other stuff) and I remember being knocked out, But it must of hurt like hell because I woke up in tears! I told my gastro doc this so hopefull he will up the sedation. I may ask when I get there for propfol and versed. They used that when I had my upper scope years ago when I was at the mayo clinic for issues I was having. They had to take like 15 biosies from my esophagus so they sedated me good! I did not remember a thing that entire day actually LOL!

I remember everything from my colonoscopy! They weren't very generous with the sedation. Endoscopy on the other hand, my usual doc did that one, and he gave me lots and I didn't remember anything.
I watched my entire colonoscopy on the screen though.

 

[Ihurt]

I dont they would be able to take a swab to test for C-diff. I think it has to be so much stool collected in a container and then sent to the lab from what I can remember. I am more worried about everything getting out of control from the whole prep really. I mean that stuff does wash out your flora. I am hoping my probiotics will do the trick. I am very worried. There are so many things I have to be conerned about. I have my bladder which is a HUGE issue. I dont want my bladder to get back into a flare or get a UTI. Death would be a better fate, that is the only way I can describe how bad it is...Any IC patient would know what I am talking about. I Hate the fact that I have been on the low dose antibiotics for so long, I mean that may even be why my gut is so messed up now who knows. I just dont want to invite any oppertunistic infections like C-diff... That would be devestating to me due to all my other health issues. This is why I think my gastro was not to fond of the idea of doing the colonoscopy. He knows it is going to mess me up in some way or form. I just keep second guessing myself about it, I mean am I really doing the right thing.. Am I asking for more trouble.. Ughh, I hate this whole mess..

Your doctors can do a test for C diff - I believe it is a culture that they do from a swab, and they can do that easily enough during the procedure. Just ask them when they set up. I don't think you are at any risk from the procedure though. The prep, while not pleasant, should only flush out all the flora and if you are keeping up your probiotics, you shouldn't really get anything untoward establishing afterwards. Given the other symptoms you have mentioned previously, the scope is the right thing to do. Hopefully the scope will give you some peace of mind through a diagnosis.

 

[BeccaH]

Alliruns: How awful for you. I told my gastro that I wanted to be sedated. He said he would, not to worry. I do NOT want to see my colon on a screen really. I had a colonoscopy 9 years ago( before I had IC bladder and all this other stuff) and I remember being knocked out, But it must of hurt like hell because I woke up in tears! I told my gastro doc this so hopefull he will up the sedation. I may ask when I get there for propfol and versed. They used that when I had my upper scope years ago when I was at the mayo clinic for issues I was having. They had to take like 15 biosies from my esophagus so they sedated me good! I did not remember a thing that entire day actually LOL!

I had a colonoscopy and upper GI done in January, both at the same time (well, one followed by the other). I chose not to have sedation and the experience wasn't that bad. I had 20 biopsy's taken and if doesn't hurt. You can feel a tugging sensation but do not have any pain.

If you didn't feel it last time then they'll probably use the same amount, I would imagine.

If you do have CD it is best to get tested for it and then get the right treatment, other wise you may risk surgery in the future and have more problems than you would just for the colonoscopy.

There was something on the news about effectivness about anti-biotics, that regular use causes people to become immune and the tablets no longer work.

I hope you do go through with it so that you can get the treatment you need and hpe to feel much better with it x

 

[Ihurt]

Thanks BeccaH,

I do understand what you are saying and it makes sense. I am just so worried due to all the other health issues I have got going on. But you are right, I mean I need to know what is happening. I think what makes it worse for me is that my gastro kept pushing the colonosocpy off, he did not really want to put me through it. He said he does not like to push this invasive test on people who are vunerable and fragile with tests like this as it can really aggravte things. This is why I did not have it done yet. Well yesterday when I seen him I can tell he was still NOT too thrilled about the whole thing. I mean I think he thinks it would be good to do just do it to make sure what is going on, but I still think he is all convinced this is all IBS! I just dont think it is. I mean I dont know if it is crohns or something else even, I just dont know.. but seeing the small amount of blood a few times kind of concerned me. He says it is likely a hemmhroid, but ya never know.

Yes, overuse of antibiotics can cause the body to become immune to them, that is true. I Hate having to take them all the time. But my doctor figured low dose dalily is better than taking them large doses all the time from all the UTIs I was getting, she said you willl become immune to them a lot quicker that way.. but who knows. They are all bad for the body that is for sure. They are poison. They really help with infections, but they all come with a price and after affect that is for sure.

 

[Ihurt]

I had to jump in here with a quick question. I am not diagosed yet, I am scheduled for a colonoscopy this coming Friday. My question is that I have been having issues in my intestines for 2 years now. If I happen to not be flaring or having a bad spout when I have my scope done are you saying they will Not see anything?? What the hell good is paying for an expensive test if it is not reliable? I mean I thought that if a person has crohns, it is always visible meaning that there is evidence of past inflammation that can be seen?? Also if they take biopsies wouldn't they be able to pick up past inflammation??

I mean you cant always get in for a colonoscopy whenever the flare hits.. there is usually some wait time. These tests a VERY expensive too, I mean it is not like you can keep repeating them ( at least not here where I live). So is basically just the luck of the draw, if they see something great you get a diganosis, if they dont, oh well better luck next time????

I agree purdueCrohn's - I had a surveillance colonoscopy a few months ago, and both the mucosal appearance and multiple biopsies were within normal limits (no active inflammation or granulomas, inflammatory cells at upper limits of normal)
So I'm happy to call it "remission", but I know it's not a "cure"!
(I'm on maintenance of 3gms of sulfasalazine daily)


HD

 

[SarahBear]

I had to jump in here with a quick question. I am not diagosed yet, I am scheduled for a colonoscopy this coming Friday. My question is that I have been having issues in my intestines for 2 years now. If I happen to not be flaring or having a bad spout when I have my scope done are you saying they will Not see anything?? What the hell good is paying for an expensive test if it is not reliable? I mean I thought that if a person has crohns, it is always visible meaning that there is evidence of past inflammation that can be seen?? Also if they take biopsies wouldn't they be able to pick up past inflammation??

I mean you cant always get in for a colonoscopy whenever the flare hits.. there is usually some wait time. These tests a VERY expensive too, I mean it is not like you can keep repeating them ( at least not here where I live). So is basically just the luck of the draw, if they see something great you get a diganosis, if they dont, oh well better luck next time????

In some cases, it's still visible after the flare has ended. In others, it's not. It really just depends.

Do you not have medical insurance, Ihurt? If you do have Crohn's you should have a colonoscopy done every few years. Insurance should cover most of the cost. Considering your other health problems, you may be able to find an alternative test but a colonoscopy is generally the most reliable.

I hope it all goes well!

 

[Ihurt]

Hmm, that is interesting. I have not been diagnosed with crohns, I am still going through all the motions with trying to figure out what is wrong with me. I started having the intestinal issues 2 years ago. I have severe pain a lot of the times. I have other health issues that are going to be complicated by doing this colonosocpy so I am just hoping it is not all done in vain if you know what I mean. I just assumed that if ones has crohns that it would be picked up no matter what through biopsies. I have health insurance but have a HUGE deductible and out of pocket pay. Also, if I have a colonoscopy now, I will Not be able to get another one any time soon that is for sure.My insurance would not cover it. And honestly, I would NEVER put my poor body through that test so freuently as it has a lot of drawbacks and risks to health in general( it knocks out most of the beneficial gut flora and is just toxic on the system), the prep that is. Well I am keeping my fingers crossed that if there is something there that they find it!!

 

[SarahBear]

If you're currently having symptoms and have been for some time, there should be some evidence. Biopsies do often show things that aren't visible on the scope, but I don't know if they still indicate Crohn's when the patient is in a stable, long-lasting remission. I don't believe the biopsies from my last colonoscopy did.

If you're diagnosed with Crohn's, your insurance should cover the test more often as it's then seen as necessary. I know it's hard on your body, but if you DO have Crohn's, it's important to check up on things every once in a while to better see what is going on and treat it accordingly, so as to prevent further damage to your body. Most people have them done once a year or every two years while their Crohn's is active. In the end, the pros of having it done outweigh the cons. However, I know your situation is different, so like I said, you may be able to find another way of monitoring things.

 

[1988]

When I had my colonoscopy I had symptoms but ie diaohrea, stomach pain, but these symptoms were not really that bad towards other times ive been ill. My colonoscopy still showed signs of crohns; the only thing is that if your symptoms are not active, the likelihood is that they will want to carry out further investigations. Ive come to the realisation that recieving a diagnosis is going to be a long process. Best of luck.!

 

[Ihurt]

Thanks Sarahbear and 1988 for the replies.

Sarahbear: yeah, maybe with a diagnosis of crohns the insurance may cover tests more often, at least hopefully. I agree that things do need to be monitored when having a disease like this. But if a person is symptom free I would think that just the whole prep with doing the scope with take that person right out of remission as it is very hard on the body. Also if crohns is cuased by a lack of gut flora in the first place, wouldn't that just put a person in a worse place? I mean I also get what you are saying too, I mean you dont want damage to b left go either. It is a hard one. I guess I will have to wait and see what they find on the colonosocopy.

1988: Highly doubt my gastro will order anymore tests if they do not find anything. I have already had a MRE of small bowel, CT scan, abdominal ultrasound, blood work up the wazoo, and stool tests. This test was the last straw kind of thing. He did not want me to have to go through it due to my other health issues, but we decided it is time to look inside to see what is happening, or hopefully get an answer. I mean I can feel I am inflammed, it just feels like it.. I am thinking my issue( whatever it is) is the cause of being on low dose antibiotics for the last 5 years in order to prevent the bad UTI's I kept getting. If my colon has inflammation in it and they take a biopsy and it comes back inconclusive, or just says unspecified inflammation ,then what do they diagnose you with?? Just curious. I mean would they just send me on my way and say I have IBS?

 

[SarahBear]

Thanks Sarahbear and 1988 for the replies.

Sarahbear: yeah, maybe with a diagnosis of crohns the insurance may cover tests more often, at least hopefully. I agree that things do need to be monitored when having a disease like this. But if a person is symptom free I would think that just the whole prep with doing the scope with take that person right out of remission as it is very hard on the body. Also if crohns is cuased by a lack of gut flora in the first place, wouldn't that just put a person in a worse place? I mean I also get what you are saying too, I mean you dont want damage to b left go either. It is a hard one. I guess I will have to wait and see what they find on the colonosocopy.

I don't think one day of prep is enough to disrupt gut flora badly enough to trigger a flare. I could be wrong, but I haven't seen many (if any) members who have had a flare triggered by a prep. I'm sure the majority of doctors would take that into account if it did frequently trigger flares. Preps are usually very easy for me, with only minimal discomfort, no symptoms brought on by it, and I can easily resume a normal diet after the scope. A lot of people experience nausea and vomiting brought on by the prep, but it's rarely enough to cause any serious problems. I think you're worrying a bit much.

 

[Ihurt]

You may be right, I mean everyone is different. I know my body is very sensitive. I was told though by my regular doctor ( this was in the beginning when I was first having issues) that colonoscopies are ok, but only to do them if you absolutely have to. She said she only recommends them for people who have a family history of cancer or if they are having digestive issues. She said she has had a few patients who underwent a colonoscopy just due to age and such and they were messed up but good from it. She told me they were never the same afterwards. This is why she as well as my gastro doc were reluctant to have me have it done I believe. But there comes a time I guess when you have to go through some tests and now is that time for me. I do take probiotics and will be upping them while and after I do the clean out for sure and hope that helps with my Gut flora. Anytime you have diarreha or do colon cleanses, colon preps, you do alter the state of your Gut flora quite a bit, I mean it stands to reason,your washing it all alway. Lots of people probably do ok, especially people who are healthy and have no underlying issues. But take a person who has an already messed up digestive tract, it is going to do some degree of damage in terms of effecting the gut flora, especially if one is on or has been on antibiotics at all. ( I have been on low dose anti-B's for over 5 years to prevent UTI's so I am in that category. I just hope the probitoics help. Most gastroenterologists will not tell their patients these things for some reason. I mean my gasroenterologist is very honest for the most part and kind of says it like it is. He was the one who told me to take probitoics, though I was already taking them. I was shocked as I have never had a western Med doctor even seem knowledgable about probiotics. I mean he also told me that those colon ruptures do happen. A lot of gastro's will not tell you this, they tell you it is rare and hardly ever happens, and true, it does not happen all the time, but my gastro said it is like 1 in every 1000 people have their colon ruptured during the scope. I do tend to worry, but I have a good reason to worry, I have been through a lot of stuff with being sick for the last 9 years and have been exposed to so many things and have learned quite a lot about doctors and the truth behind a lot of things. Sometimes I wish I did not know as much as I know about things as it does add to my worry, ignorance is bliss sometimes .

I don't think one day of prep is enough to disrupt gut flora badly enough to trigger a flare. I could be wrong, but I haven't seen many (if any) members who have had a flare triggered by a prep. I'm sure the majority of doctors would take that into account if it did frequently trigger flares. Preps are usually very easy for me, with only minimal discomfort, no symptoms brought on by it, and I can easily resume a normal diet after the scope. A lot of people experience nausea and vomiting brought on by the prep, but it's rarely enough to cause any serious problems. I think you're worrying a bit much.

 

[CrohnsChicago]

It think everything that could have been said on this topic has been said in this thread.

Try to not worry yourself too much over it. Yes there are risks and the risks may be greater given your health situation, but the reality is that its not very often that people experience complications from colonoscopies to the extent that you seem to be concerned. If you want to know how often it happens, make sure to ask your doctors. It sounds like they are very good at providing you information. The benefits of getting this test done far outweigh the risks if you want to TRY and get answers.

I have generalized anxiety disorder to I understand your concerns and need/strong desire to research and know what to expect before it happens. In this case however, I think you have learned all you can, maybe more than you need to. Conlonoscopies are fairly straight forward process. The prep will be annoying and uncomfortable because you are always at the toilet, but hopefully it won't cause too many problems. And it sounds like you are taking the suggestions of your doctors. That's about all you can do until the actual procedure. And if they find nothing, then it is one additional health concern you can rule out (including cancer if they decide to take a biopsy) and you can decide what your next step in finding the cause will be. Being undiagnosed is no fun I know. It's an overwhelming pain in the ass in addition to everything else you have to deal with.

I hope everything goes well for you and just try not to think too hard about it before it actually happens or you will work yourself into a hot mess and possibly all for nothing. Stress and anxiety are also very good triggers for the discomforts of both IBS AND IBD. (stay away from the webMD and google searches, they are helpful, but they can also be self-fulfilling prophecies)

:hug:

 

[Ihurt]

Thanks CrohnsChicago. Hopefully all will go ok, I just have to not think about it too much I guess...

It think everything that could have been said on this topic has been said in this thread.

Try to not worry yourself too much over it. Yes there are risks and the risks may be greater given your health situation, but the reality is that its not very often that people experience complications from colonoscopies to the extent that you seem to be concerned. If you want to know how often it happens, make sure to ask your doctors. It sounds like they are very good at providing you information. The benefits of getting this test done far outweigh the risks if you want to TRY and get answers.

I have generalized anxiety disorder to I understand your concerns and need/strong desire to research and know what to expect before it happens. In this case however, I think you have learned all you can, maybe more than you need to. Conlonoscopies are fairly straight forward process. The prep will be annoying and uncomfortable because you are always at the toilet, but hopefully it won't cause too many problems. And it sounds like you are taking the suggestions of your doctors. That's about all you can do until the actual procedure. And if they find nothing, then it is one additional health concern you can rule out (including cancer if they decide to take a biopsy) and you can decide what your next step in finding the cause will be. Being undiagnosed is no fun I know. It's an overwhelming pain in the ass in addition to everything else you have to deal with.

I hope everything goes well for you and just try not to think too hard about it before it actually happens or you will work yourself into a hot mess and possibly all for nothing. Stress and anxiety are also very good triggers for the discomforts of both IBS AND IBD. (stay away from the webMD and google searches, they are helpful, but they can also be self-fulfilling prophecies)

:hug:

 

[BeccaH]

Hope you're feeling a bit better about the procedure.

When I had mine done, I did have active inflammation, they look a lot like mouth ulcers. However they told me that it may have been due to medication that I was taking. They took biopsys to confirm this, from the ulcers and the unaffected part.

You could see where my bowel had been inflamed previously, it was scarred, a patchy complection rather than the unscarred pink tissue, so even if you don't have active imflammtion you should be able to see past damage. Mine is thought to be quite mild and it still showed.

You don't experience bleeding with IBS. However a lot of people with CD/UC do also have IBS, there is currently a study going on at my hospital to see if they are related. If it is hemmorhoids then they should be able to see this with the colonoscopy.

So if they don't find hemmorhoids it can't be put down to IBS. Keep strong and get the answers you need. It is very difficult. I spent years trying to get diagnosed for another condition, and I got the answers in the end. Which funnily enough helped toward the CD diagnosis, I shrugged the bloody bowel movements off to piles, I should have actually got it seen to a long time ago!