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I'm getting my first colonoscopy: What's your advice?
Digestive Health | Last Active: Jun 6, 2019 | Replies (37)Comment receiving replies
Oh my goodness! Missed quite a discussion it seems. Hopefully, I'll be able to hit everybody's messages. I'll just start by saying, gastroenterologist's report after the procedure was that everything looked good -- no signs of colitis or inflammation. They did take biopsies from the ilium to check for microscopic evidence of colitis (@hokiefan, right before I went under at anesthesia I asked about doing a mast cell stain, and he said when I woke up that mast cell stains would only be done if the tests indicate irregularities), but just based on visual exam I'm in the clear. Mostly relieving, since this experience was absolutely awful and I did NOT want to have to do this again anytime soon, but still slightly disappointing/frustrating that it still means no answers for what's going on. I also do wish I had more confidence in the doctor who did the procedure, but it is what it is.
@travelgirl - Four in one year?! You are a much stronger person than I am. I don't think I could survive that. I've had kidney stones, gallstones/gallbladder surgery, etc. -- and this experience probably tops my list of worst ones (although maybe it's just dulled memory making those seem better lol).
@eliana5 , Suprep actually is what I was prescribed, and it was still just insanely awful. I think that's mainly because of the timing stresses -- you mentioned being able to drink it slowly over 2-3 hours, but my instructions were to get it down in 20 minutes, and trying to stomach that (when I've already been having nausea) was just a nightmare. I think the other thing is I was just grossly uneducated and underprepared about what to expect -- I had this vague notion that it was going to be really unpleasant, mostly from watching my mom go through it every year because of her ulcerative colitis, but I honestly had no idea what to expect, what the process would look like (and boy, some of that stuff that comes out is freaky if you have no clue it's coming lol), how long it would take, things to get to ease the process (BABY WIPES FROM THE START!!!), etc. It was only when I talked to the on-call physician (since I couldn't get that gunk down in the 20 minutes I was supposed to) that I learned the stages (brown sludge, yellow sludge, goal is urine-like, etc.), which I'm incredibly grateful for because it would have been even more disconcerting if I hadn't talked to him. Again, another thing I'm not too pleased about with this particular gastroenterologist/practice for not explaining upfront.
It sounds like the two things we all agree on, is the new lower-volume options are a definite improvement over the gallon gunk mixture, but ultimtaely it's still just a really unpleasant procedure. Doctors probably prescribe different options based on other issues you have/what they're looking for, and different patients probably tolerate the different treatments differently, so the main thing is just knowing and asking your doctor about the different available options. I probably wouldn't have asked about a different treatment even if I'd known about them, but I do think in light of my nausea I'd have requested a longer "intake" period so I wasn't so stressed about getting it all down by 4am. Live and learn, I guess.
Lastly, I did find the information about MiraLax intriguing. I'll have to look that up -- the gastroenterologist had recently told me to take that.
Thanks all for the advice and support! @travelgirl , your late night support and advice were particularly comforting in the middle of the madness. Thanks everyone!
Replies to "Oh my goodness! Missed quite a discussion it seems. Hopefully, I'll be able to hit everybody's..."
@peabody88 I am so happy it all turned out great for you. That is wonderful. Better good news than bad news. However I know that still doesn't answer why you weren't feeling feel well to begin with.
Hopefully soon you can find answers.
You take care, and whenever you feel like chatting medical pop on and say hello to all of us.
All my Best
Jackie
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Also, now that I've gone through this, here's my takeaways that I wish I'd known beforehand:
1. READ YOUR INSTRUCTIONS IN ADVANCE (this includes papers from the doctor directly). I picked up the prep kit the day before I was supposed to start prep and didn't open it until it was "go" time. It was a surprise to find out I was supposed to be on a completely liquid diet the entire day before; fortunately, I'd only eaten a granola bar and it all worked out, but that could have turned out very different. Since most physicians' offices close before your initial dose "start" time, reading the instructions early also allows you to call during normal office hours to ask any questions or express any concerns without debating whether to call the "on-call for emergencies" number. Some medications also need to be stopped up to a week prior, so you'll need to know to do that if necessary (make sure you review your list of meds and supplements specifically with the doctor to make sure there's nothing unusual to stop). My doctor's office also had specific instructions that were different than the manufacturer's, so be sure to read both.
2. Speaking of, make sure you ask about and make a note of the on-call physician phone number and policies for using it if you're not given that information upfront, and don't hesitate to use it if you're having issues. You may be reluctant to wake anyone else up, but that's less of an inconvenience for them than having you show up with an "incomplete" or "inadequate" prep that forces them to postpone or reschedule the procedure (not to mention, extra discomfort for you -- I was miserable and terrified of the idea of having to repeat the prep, ugh!).
3. Ask your doctor in advance if there's any special considerations/adjustments that need to be made to your prep based on the issues you're experiencing. For instance, if one of your symptoms going into this is nausea (like me), swigging a cupful of rather unpleasant smelling liquid likely isn't going to be a cakewalk for you. Ask if you can take/the doctor will prescribe an anti-emetic like Zofran to help you "stomach" (pun intended) the prep (note you'd probably need to take the first dose an hour or so prior to starting prep otherwise it'll be flushed from your system fairly quickly), or ask if you can lengthen the amount of time you're given to drink the prep so you're not trying to gulp it down and can lay down for a bit if you start to feel nauseous before resuming. With constipation problems you may also want to ask about starting prep sooner since it may take your body longer to digest and cleanse your system, and start a liquid diet sooner (although again, I think this would probably help anyone). For diarrhea or nausea, or anyone really, ask if you need to continue taking a dose/complete a dose once you've reached the "goal consistency" of clear, see-through urine like liquid; the on-call physician told me I didn't need to, but doctors seem to have differing opinions on that and it may depend on your specific condition/problem. There are also different prep medications available, and in discussing your particular problems your doctor may suggest a different one or let you choose from a few options.
4. This is not the kind of procedure where you want to enjoy a "last supper" splurge, unless it's a week in advance. Food can hang out in there for quite some time, so it will likely make things "pass more smoothly" if you start a liquid or low-fiber diet several days to a week prior, regardless of what the instructions require. From what I've read this is particularly true if you have problems with constipation.
5. Treat your "bottom" gently from the beginning. I bought so-called "soft" toilet paper, but by about the first "runny" episode I was already incredibly sore and bleeding a little. I had also read and fortunately bought alcohol-free and fragrance-free, hypoallergenic baby wipes, but I wish I'd used those right from the start and maybe avoided or prolonged any bleeding at all. Have vaseline on hand also to use to soothe the area during periods where you're able to leave the toilet -- it does indeed help. So, your pre-prep shopping list (and you want to get it before starting, because you're not going to want to be far from the bathroom once you start) should include: Super soft toilet paper; alcohol-free, fragrance-free, hypoallergenic baby wipes; vaseline; hand soap (preferably something that's also gentle/moisturizing and nice smelling); liquid diet approved items like meatless, noodleness soup broth and apple juice/lemonade/gatorade (be sure nothing is red or blue though, since this can "color" your system in a way that mimics blood); odor fighters (whether it's plug-ins, air fresheners, etc. -- my #2 doesn't normally smell, but boy when you start getting to the stuff way up in there things change); and some form of ventilation (being shut-in the bathroom, sometimes straining, for quite some time did bad things for my nausea and I started to feel faint and overheated at one point -- if you don't have a window or it's not cool outside to open it, and you don't live alone or feel comfortable leaving the door open, a fan of some kind is something to have ready to go).
6. When it gets down to it, this is just an incredibly disturbing experience; you will have strange things coming out of places you'd never expected. Having a general idea of what to expect when you start might help make it less unsettling (although it's still probably always going to be weird to be "peeing" from your bottom).
A colonoscopy will never be something you volunteer to do for kicks, but you can make it more tolerable. Good luck!
Here's some helpful links I relied on during the process:
-- http://www.heartlandqc.com/images/uploads/services/Colonoscopy_-_One__Done.pdf (This has a photo scale of what color to expect your poop to look like from start to finish on p. 12, plus some typical FAQs like what you can eat/drink)
-- https://tearlines.wordpress.com/2013/09/16/some-extra-fun-colonoscopy-prep-tips/ (This has a lot of great tips, and is written in a really fun and frank way that gave me a good laugh when I was struggling)