Worries about upcoming colonoscopy

[teeny5]

So...I have been doing really well for the last few of years. Minimal symptoms and only a couple of minor flares that I got under control quickly with Entocort. My GI has been telling me for a long time that I would have to do another colonoscopy. Well, it's that time. I have it scheduled mid July.

Here is what worries me:

1. Since my blood work has been normal does that mean I will have no inflammation? On one hand that would be great! On the other hand I am worried he would change my diagnosis and/or treatment. Officially I have indeterminate colitis, but he has always said looks like Crohn's. But, my prometheus test came back negative and my GI is pretty cautious so I think he didn't want to stamp it as Crohn's until he was positive. Just don't want to start another medication. I missed 2 doses of my pills and immediately started going downhill. I don't think he would take me off the meds...hoping he doesn't change them.

2. What if there is a lot of inflammation or scaring? This is scary for me. I always had mild to moderate symptoms. My first colonoscopy had sections on and off of inflammation throughout the colon. It was bad and took 2 years to get under control. My GI mentioned this colonoscopy would be to "see where the inflammation is at and assess any damage." Seriously, you can still have inflammation/damage going on even when in a so called "remission?" What could I be facing with damaged areas of my colon? New meds? Eventual surgery? Just scary to think about. I feel like I shouldn't worry because I am doing so good now, but honestly just feel like a ticking time bomb...waiting for the next flare. I know it's coming, just don't know if it will be tomorrow, next year, or 10 years from now. I feel lucky to have been well, but terrified of what the future holds.

3. Pain...I was sedated the first time, but still felt a lot of pain (I am assuming from the many biopsies.) Scared of being in pain during and after.

4. The procedure itself. I HATE doctors and hospitals! Since getting this disease I have had more dr visits and procedures done than in my entire life prior. I have an irrational fear of it being painful or that they will tell me something horrible. I was so sick before I would have done anything to fix it. Now it's a bit different because I have been in relatively good health.

I feel like it won't be that bad, but I will still stress about it...a lot. I am a person who stresses about everything. My husband says he doesn't worry about things because I worry enough for the both of us. It's hard to talk about it with anyone because they just don't understand. Most people my age have never had a colonoscopy...and certainly don't want to talk about it. I want to know what's going on in there, but at the same time feel like I will get bad news. Trying to add in some yoga to help stress levels.

Sorry if this all doesn't make sense...just needed to let it out.

 

[afidz]

Try not to think about it too much. You will worry your self sick.
As for the change in DX, I think we are a little of afraid of that at some point. Its not that you want IBD, its the fact that you don't want to go with out answers again. If you have a DX, you can have a plan.
I would talk to your doctor about all of your concerns before you get the scope. My last scope my GI was in the room before they put me out because he wanted to make sure I didn't have any concerns before things started. Just make sure that you see your GI before the test.
Good luck on the scope, hope it goes well

 

[DougUte]

Hi Teeny5.

I have had 5 colonoscopies in 5 years. I have learned not to stress out over them. Like afidz said, don't think about it so much.

I understand the fear of not knowing what is going on. I think your G.I. will not change the meds because they are working. Don't fix what isn't broken. remission is a very good thing and you have acheived that.

Make sure you talk to your doc before the procedure. My GI always makes sure that any questions I have are answered as well.

Hope everything goes well for you.

 

[Cat-a-Tonic]

Teeny, can you call and ask about the sedation and let them know about the pain you experienced last time? They might be willing to give you something better. At my last scope, I had sedation (versed & fentanyl), and while I didn't have any pain (that I remember anyway), the sedation didn't work and I was apparently awake and talking the whole time. My GI said that for all future scopes, I can have propofol (anesthesia, rather than sedation) which should properly knock me out - it wasn't even my idea, it was my GI's, but I'm glad as now I don't have to worry about being awake during future scopes. I think that most doctors want you to be comfortable, and if you experienced discomfort in the past then they should be willing to work with you to make you more comfortable. So definitely ask about that, they should be open to the idea.

As for the result, either you're still in remission or you have some inflammation. But either way, at least you'll know what's going on and can treat it if there is inflammation. Try not to worry too much until after the test. I know that's easier said than done. Once it's over with then you can either continue to rock remission, or you can fight the inflammation and head back towards remission. Either way, you can handle it - I promise.

I am not a fan of hospitals or doctors either, so I try to treat myself to some nice things. Like, for prep day/night, I act as though it's a spa day (prep is more or less a "cleanse" anyway, ha ha). Buy some fancy mud masque stuff and give myself a facial, paint my toenails a happy color, pluck my eyebrows, etc - whatever I can do from the toilet! And I light some scented candles, have some nice bubble bath on hand, a nice playlist on my ipod on a dock in the bathroom, etc. And on scope day, I make sure to have my stuffed animal with me (so what, I'm 35, doesn't mean I can't have a stuffed animal!) for comfort, and I have my fluffiest slippers on and I make sure that I have a yummy meal picked out for afterwards. It's okay to give yourself some treats and be nice to yourself when you're going through something icky like prep & scopes.

Afidz, does your GI not do your scopes? My GI has personally done every single one of my scopes so he's always in the room both before and afterwards. I've never had to ask for him to be in the room because he's always there anyway. It didn't even occur to me that someone else besides my GI would do my scopes - my GP has actually mentioned that he does colonoscopies as well, so I guess I'd have him scope me if my GI were unavailable for some reason. I'd never not have my own doctor do it, though. That seems odd to me that some random stranger would be scoping me!

 

[teeny5]

Thanks everyone! I know I shouldn't stress, but unfortunately that is my personality. I will have to ask him about the sedation. I don't remember anything except feeling pain. I probably talked the whole time...how embarrassing! Some people don't mind being awake...I am like knock me out or else I might have a friggin' panic attack!

Cat- I love the spa day idea for the prep! When I was super sick I hated how thin I was...I felt like a walking skeleton. I use to paint my nails so I could feel good about something on my body.

 

[Gutsii]

Here is my advice,

Don't frame the experience as a negative one before going into the test.

As soon as you tell yourself it will be scary, discomforting etc. you assure that it will be.

Think of the whole procedure as one further step that will help you get closer to optimal health. Finding out at what stage you are in will draw you a path of where you need to go and how to get there.

The more you try and explore, the better you will understand how to heal

 

[Cat-a-Tonic]

Teeny, I am the same with painting my nails, particularly when I first got sick. I was at the doctor, pharmacy, hospital so often and it made me depressed every time, so I'd always buy myself a new bottle of nail polish afterwards to cheer myself up. It was cheap, pretty, and made me happy. But as a result, I amassed WAY too much nail polish! I've since cut down on buying nail polish but I still love to paint my nails. I tend not to paint my fingernails before a scope since they always put that thingy (pulse ox or something like that?) on one of my fingers, and I've been told that thing doesn't always work with nail polish. Painting my toenails though is totally fine.

Yeah, I apparently talked the whole time during my last scope too - not sure of what I said but I'm guessing it was just basically drunk-talk. I don't have much memory of it, but I do recall at one point I was trying to see what was happening on the monitor. I didn't have my glasses on so I couldn't make out what I was seeing, and I recall complaining that "I can't see!" and I think then a nurse told me to be quiet and that's where my memory ends. Ha ha. It felt like a dream and I was definitely very loopy from the sedation, but at least I didn't experience any pain or even discomfort that I can recall. With you having pain AND being awake and talking the whole time, I would think they'd be fine with letting you have anesthesia rather than sedation. Definitely ask well ahead of time though so that they can make sure to put that in your file.

 

[DougUte]

Teeny, I have never had sedation. All of my colonoscopies have been with propofol. If I was you I would just ask my GI about being asleep for the procedure. Propofol is not a complete put you under med., but it will put you to sleeping. I actually woke up during one of my scopes. I watched the monitor for a minute and decided I better say something. The nurse turned a knob and that is all I remember.

 

[teeny5]

Ok so I will have a sedative via IV and pain killers.

I got the instructions today and it says to take any heart or blood pressure meds...but no mention of other meds. Do I skip the Colazol the morning of?

 

[teeny5]

Cat - I have like a 20lb bag full of all my nail polish I bought! Hahaha

 

[kiny]

3. Pain...I was sedated the first time, but still felt a lot of pain (I am assuming from the many biopsies.) Scared of being in pain during and after.

You can always discuss the type of sedation with your GI.

Biopsies are smaller than people think, they are the size of the head of a small needle, they don't cause any pain.