I'm getting my first colonoscopy: What's your advice?

Posted by peabody88 @peabody88, Sep 26, 2018

I always knew this day would come, since my mom has ulcerative colitis and my dad has celiac disease and diverticulosis, but I'd always assumed it wouldn't come quite this soon...I have my first colonoscopy scheduled on Thursday. Watching my mom suffer through the prep every year, I know it's going to be unpleasant, but I need to make sure it's WORTHWHILE. Unfortunately, I don't have much confidence in the gastroenterologist/practice who will be doing the procedure -- he did an upper endoscopy a month ago that I have some concerns with his findings/methods.*

I've been chronically and inexplicably ill since June with extreme fatigue, low-grade fever (99-100), nausea and urinary frequency; more recently (after the endoscopy, in fact, although I don't think there's a causative relationship there other than they tell you to pay attention to your stool afterwards, which is something I never really did previously), I have had some issues with my anal area feeling "moist" (occasionally area will be wet in underwear) and like there's something moving down there, and I've seen increasing amounts of mucous and occasionally blood spots in my stool. With the as-of-yet unexplained fever of unknown origin and slightly elevated CRP, the nausea and strange bowel experiences, the infectious disease specialist spoke to the gastroenterologist personally and now he wants to do a colonoscopy. Even before this was advised, I had hoped to seek a second opinion from a different gastroenterologist/practice, but unfortunately, a slew of factors (running out of FMLA days/difficulty obtaining short-term disability without a diagnosis; the "re-set" of my out-of-pocket-maximum, which I'd reached in July, on October 1; repair surgery on Friday for an incisional hernia in my umbilicus from my gallbladder removal surgery in 2016; and honestly just exhaustion from feeling like crap) mean I'm pretty much stuck with this guy. So, I need to make sure I'm well educated and know exactly what to ask for and how to prepare. Particularly:

1. Are there any medications that need to be stopped/could affect any potential biopsies taken or testing done (Protonix/pantoprazole, a PPI, especially comes to mind, as well as the antibiotic Doxycycline, and maybe the probiotic)?
2. Is there anything in particular I should ask be done/tested for? I read @tdrell 's note to request biopsies be read by a gastric pathologist (how exactly would you do that? Do I ask the hospital somehow?) and @hokiefan 's suggestion to have stains for eosinophils/mast cells done (not sure what this would be for? I assume some kind of allergy or intolerance?), and I may request an acid-fast bacilli stain done as well in consideration of a positive Quantiferon Gold TB blood test a month ago. I'd like to ask (or if I have time, research beforehand) about whether anything special needs to be done/tested to consider parasites (I had frequent recurrent issues with pinworms as a kid; I've tried the "tape test" and checking my stool several times but don't see anything moving) and/or rectal yeast infection (I'm not entirely sure this is even a thing, but I've been struggling with chronic vaginal "yeast infections" -- the doctors swear that's what's going on and then the culture comes back negative -- so I want to make sure that's not somehow connected. Anything else? Doubting the upper endoscopy results after-the-fact was bad enough -- I do NOT want to have the same worries about this colonoscopy and perhaps have to have it repeated down the road/if I get into Mayo/upon a second opinion).
3. I realize my ignorance is showing, but is there anything gynecological that the gastroenterologist could see/explore in a colonoscopy, and/or anything liver related? There've been a lot of weird vaginal exam findings -- both my primary care and gynecologist were convinced I had a bad, acute yeast infection or (less likely) bacterial vaginosis, and I was started on Diflucan, but then the test results/cultures came back normal, and nobody's given me an alternate explanation other than "practice good genital hygiene", like no douching (never did), I've switched to cotton underwear, I take probiotics when on antibiotics (like I am presently), not sexually active, etc. Admittedly, I've never paid much attention to "down there", and am embarrassingly clueless about what everything is, but from my best understanding of some research (it's actually rather hard to find clear/understandable information on female anatomy that you can match to your own body), I think I have a polyp just inside my vaginal opening. I'm assuming the gastroenterologist can't, and I probably don't want, him taking a peek down there while I'm out and taking any samples or something, but assuming that's true, is there anything he WOULD be able to see/look for that could indicate a gynecological issue (other than the obvious like a prolapse or fistula or something)?

The liver is another thing that keeps coming up with abnormalities; there was a 7x7mm cavernous hemangioma identified and removed from my liver during my gallbladder/appendix removal surgery in 2016, and the biopsy report showed "mixed inflammation of the portal tracts, which is mild to moderate, and contains neutrophils, eosinophils and lymphocytes, predominantly. Foamy histiocytes are also seen in association with the portal tract." I haven't had much luck searching what that means -- my infectious disease specialist didn't think it was normal -- and I don't know for sure that it couldn't all have been from the gallstones that precipitated the surgery, but it's another question. My most recent MRI/ultrasound shows a new lesion, 4x2.7cm focal nodular hyperplasia (benign, but again, I'm 30 years old and not sure why I'm sprouting liver lesions right and left), and one of my abnormal blood results was an elevated LD5, "seen with striated muscle lesions (eg, trauma) and with liver diseases (eg, hepatic congestion, congestive heart failure, hepatitis, cirrhosis, alcoholism)" -- and not an alcoholic, FYI, and hepatitis blood work all came back negative and cardiologist said everything was fine there. But again, if there's anything I can ask him to check out/look for liver-wise, I think it might be a good idea.

Ugh, I always start off intending to write a short, succint post since I know these long honking things scare people off and probably decrease my chances of getting help, but it never seems to work out because there's so many variables or possible avenues to mention, and I don't want to leave out the one little detail that might inspire a lightbulb moment. If you're still reading this, or did a skim the top and bottom, any advice on how to make sure I'm making the most out of this colonoscopy would be greatly appreciated. Advice on how to make this as painless as possible wouldn't be amiss either. 😉 Thanks in advance!

*My main issue was, I asked his office about stopping Pantoprazole (a Proton Pump Inhibitor) prior to the upper endoscopy and was told no need to discontinue. After the procedure, I asked if that PPI use could prompt a false negative biopsy result -- again, was told no; however, all the peer reviewed articles I've read since say in fact it very often does affect the histopathology biopsy (it inhibits the bacteria growth, though you still have it), and should be stopped at least two weeks prior. Also, all the biopsy samples were taken from stomach body, when the evident inflammation was noted in the gastric antrum (and again, research and procedural guidelines seem to instruct taking biopsy samples from both sites). Lastly, the biopsy samples were sent to the pathologist labeled "rule out H. pylori" -- that sounds like it means no other pathology was studied, which seems like a huge waste. On a less technical side, I've also been very frustrated with his lack of communication with me -- right after the endoscopy, he had said I had "watermelon stomach" inflammation very common with H. pylori, but it could also be bile reflux, especially since my gallbladder was removed in 2016; then after the H. pylori biopsy came back negative, and I tried multiple times through his staff to set up an appointment to ask about the PPI use and how we explore bile reflux, and he left a message (I was, ironically, in the bathroom at the time) that "gastritis can be caused by anxiety and stress." That is very true, and I'm not saying that can't be the cause, but I just want to know why the other possible causes he mentioned are suddenly ruled out and the diagnosis is "anxiety". For all these reasons, I'm not thrilled that he'll be doing the colonoscopy, but I feel stuck at this point.

Interested in more discussions like this? Go to the Digestive Health Support Group.

@travelgirl - Thanks Jackie. I'm not planning on going anywhere but the bathroom for a while, so coconut water's off the table lol. I actually called the physician exchange when I was thirty minutes in, only halfway through and felt likely to vomit at any moment. The physician told me to stop drinking it, lay down for an hour, and then get through the rest (I finally finished that dose at 10:30pm ... only six hours late). I just started having incredibly nasty, smelly yellow runny diarrhea around 45 minutes ago (I honestly don't think I've ever had diarrhea before...renewed empathy for people who have it regularly, for sure). I'm bleeding a little on wiping, and boy does it burn, but I think that's probably fairly normal (?). Guess I better start trying to get through this next dose -- this is the first time I've been out of the bathroom long enough since I was supposed to start it to actually try. "Bottoms up" has never been so menancing....

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@peabody88 well I wish you the best with ur test tomorrow. Keep us updated on hiw it goes
Jackie

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@peabody88

@guener - Wow, huge kudos to you for reading through that novel of mine, and providing such thoughtful answers! Much appreciated!

I'm honestly not particularly worried about the colonoscopy per se, I just want to make sure I'm doing everything I can in advance to make sure there's no reason to doubt the results and/or need to repeat the procedure because a certain test or possibility was missed. And unfortunately, my doctor has proven difficult to reach to ask questions, and/or I'm not sure I feel confident in his office's ability to provide accurate information, which is why I'm trying to verify things myself.

Totally true; there's a million things that could be causing my issues, and it's by no means a clear-cut case of oh yeah, you're a textbook case of UC/Crohn's/etc., but we're running out of things to check and the infectious disease specialist -- who I trust completely -- thinks this is a reasonable avenue to explore.

I actually have submitted my medical documentation to Mayo upon referral from my infectious disease specialist; Mayo's infectious disease department actually called this morning and said they're referring me/passing that over to the general Internal Medicine department instead (not sure if that's good or bad -- I'm a little worried that's going to increase my wait since a more general department probably has more requests). I just hope someone can help (and soon). It helps to hear stories about others who'd been given the "all in your head" spiel and yet eventually found answers and help. Glad your mom was able to push through!

Yes, I have a list of medications to avoid that their office provided and have asked about the ones I mentioned specifically, but like I said, I believe previous information they've given me has been inaccurate, so I'm reluctant to rely solely on them to provide good information (I'm not just relying on internet advice either, but it would give me an idea of what to research).

All excellent advice. You really answered a great many of (my great many!) questions and in an intelligent and well-considered way. Again, I very much appreciate it!

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Hi, have you considered being prescribed by your Gastroenterologist or who is doing the the Colonoscopy to be prescribed "Suprep" bowel prep? It's so much easier than having to chug down this huge jug of a powder (PEG, Polythene Glycol). There is a black box warning on FDA website about Polythene Glycol, also known as Miralax, Clearlax, Laxido, GoLytely, PEG.. It may soon be taken off market. It it made from the same ingredients used to make household cleaners, Toothpaste, Antifreeze. I don't know why Doctors prescribe this laxative like candy, especially to children. If you look at ingredients used in Antifreeze or household cleaners, you will either see PEG, or Polythene Glycol. It's dangerous, or you can go to FDA website and type in black box warning, PEG, or Miralax.. The "Supprep bowel kit" is so much better. Just ask for it, they will prescribe it. It comes in two small bottles..about 8 ounces, you can chill them if you want but not necessary. You take one bottle (they may prescribe split doses) mine was just the two bottles the evening before so I did not have to wake up at 4am the next morning. I had the lemon flavored, and the taste is actually pleasant. You just put it in a small cup that comes in a kit. Then add a little cold water, not much..to the full line and drink it slowly for next two-three hours. No cramping. No huge jugs. Very easy. You may find you don't need the second bottle. Within about 1/2 after taking the first bottle, you are going. It cleans you out well, but just with one or two small bottles. I did mine within a couple of hours of each other, and I was done by about 8pm the night before the Colonoscopy. It works so well, I did not have to use the second small bottle. Very safe and easy. You can even Google it if you want. Just some thoughts. x

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@peabody88

Land sakes this stuff is awful! Why am I doing this again?! Wondering how anyone motivates themselves to get this stuff down...and within 20 minutes?! Then two bottles of water within the next hour?! Help!

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Please see my reply on being prescribed the "Suprep Bowel Kit" 2 small bottles, comes with a small cup. Much easier and more pleasant experience than a huge jug, with a powder laxative with a black box label on FDA website. I used it, and found it to be the easiest Colonoscopy prep I have used. I sent you, (I'm new, so hope I did it right) you a reply..longer one. Just scroll down..☺

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I googled some information about "Suprep Bowel Kit." I am providing a link from WebMD. While it sounds too good to be true (just 2 small bottles) it appears that it is not meant for a lot of people with certain GI disorders. It is important to read the side Effects, Precautions, as well as some of the Reviews. Here is the link:

https://www.webmd.com/drugs/2/drug-154631/suprep-bowel-prep-kit-oral/details

From what I have read, it will probably not be a bowel prep for many of us suffering from GI disorders of various types. It is also quite costly.

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@hopeful33250

I googled some information about "Suprep Bowel Kit." I am providing a link from WebMD. While it sounds too good to be true (just 2 small bottles) it appears that it is not meant for a lot of people with certain GI disorders. It is important to read the side Effects, Precautions, as well as some of the Reviews. Here is the link:

https://www.webmd.com/drugs/2/drug-154631/suprep-bowel-prep-kit-oral/details

From what I have read, it will probably not be a bowel prep for many of us suffering from GI disorders of various types. It is also quite costly.

Jump to this post

My gastro said much more safer than a huge jug of dangerous laxative. Everything carries a few risks..but this is by far, the best thing and safest for Colonoscopy. Much less risk than putting antifeeze in your body..? Also, my insurance paid for mine. If you Google Miralax, or what you are taking, lots of risks mentioned for those of us like me with intestinal disorders. I hope you consider it. But if not, best of luck to you. ☺🌹x

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@eliana5 @hopeful33250. I think all the different preps are based on the symptoms the patient has prior to getting the colonoscopy. I don't think you can really choose a prep on your own. I think the Dr needs to assess each patient. My very first Colonoscopy I was given Prepopik. The Dr's didn't suspect anything. Then when they found an Ulcer in my Cecum with a pre-cancerous flat polyp hiding underneath it, the prep was switched to the Big Gigantic Gallon Jug. Every colonoscopy after that I been prescribed the old fashioned Gallon Jug. Which my insurance covers completely. The prepopik I had to pay 40.00 for the honor of drinking that.. Which was just two bottles if I recall correctly.

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@travelgirl
Thanks for that added information, Jackie. Yes you are right. Your doctor is the best judge of what type of prep is best.

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@travelgirl

@eliana5 @hopeful33250. I think all the different preps are based on the symptoms the patient has prior to getting the colonoscopy. I don't think you can really choose a prep on your own. I think the Dr needs to assess each patient. My very first Colonoscopy I was given Prepopik. The Dr's didn't suspect anything. Then when they found an Ulcer in my Cecum with a pre-cancerous flat polyp hiding underneath it, the prep was switched to the Big Gigantic Gallon Jug. Every colonoscopy after that I been prescribed the old fashioned Gallon Jug. Which my insurance covers completely. The prepopik I had to pay 40.00 for the honor of drinking that.. Which was just two bottles if I recall correctly.

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I actually didn't really "choose" it. I had just expressed concern..as I have too hard of time with PEG prep, and can not do huge jugs. That is when they gave me "Supprep". I am just trying to help on my experiences. I feel I am being berated for caring. I mean no harm and am not telling anyone what they should ot should not do..I am completely aware it is the gastro decision. Have a great day.

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@eliana5 Oh please no don't feel that way.. Your advice is excellent..

I was just offering my experience from what I been told by my Dr. Your post allows people to inquire with their Dr, as to what you were given.

I just want people to know that it maybe the case, that based on their particular situation, they may not be able to be prescribed Supprep.

To be honest I really liked the Prepropik even though I had to pay 40.00. Trust me It was far from torture drinking that mixture. Everyone on the planet would be lined up like church to get a colonoscopy, if that is all they had to drink to get cleaned out. .After being diagnosed with stage 1 Cecum cancer, I can no longer get prescribed that prep.

So all our information that is being posted, is all excellent advice. Don't feel like your being berated. That is no ones intention here.

You were tagged so we can engage in conversation. That is what we usually do on connect, tag the people that were part of a conversation. And I tagged you so maybe you could inquire with your Dr about the Prepopik I was given. Maybe that is something you could try next time?

And Thank You for sharing your experience. Pipe in whenever you want please. Your input is very valuable to everyone reading.

I just wanted you to know my experience that is why you were tagged with my response.

And Welcome to connect ,I just noticed your a new member. Thank you for being part of our community. We cherish your thoughts, advice suggestions and experiences. Connect is here for every patient worldwide to share, and receive medical advice, tips and experiences. If you have any questions or ever need anything please know that I will be happy to help you with whatever I can..

Jackie

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