1st time colonoscopy - 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, 4×2.7cm 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.

@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.

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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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@eliana5

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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Fortunately or unfortunately for me, I have a colonoscopy every 5 years. I remember taking a 2 bottle prep (name??) the last time and it was the easiest prep that I ever had. My GI told me that he wanted me to use that one. I don't know whether my post transplant status played a part in that on not.

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@rosemarya

Fortunately or unfortunately for me, I have a colonoscopy every 5 years. I remember taking a 2 bottle prep (name??) the last time and it was the easiest prep that I ever had. My GI told me that he wanted me to use that one. I don't know whether my post transplant status played a part in that on not.

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Maybe it was Sup Prep?

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@travelgirl

@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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Thank you for your kind response. It means a lot to me. Although, I really liked the Sup Prep..I will definitely inquire about the prepopik you mentioned. I didn't think anything was better than the Supprep…so next time I will see if I can be prescribed that. Thanks again for your warm response and welcome. ☺

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@eliana5

Maybe it was Sup Prep?

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You are testing my memory 🙂 Mine was 4 1/2 years ago, so I will be rescheduling one in the spring.
And to make matters worse for me, is that my GI no longer practices locally, in fact we do not have a GI here.
I'll have to get back to you on that.

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It's okay. I was just curious..as I did not have a bad reaction to it, like I did with the jugs that Gastros seem to prescribe like candy, or other preps. ☺

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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

I recently had another dreaded prep for colonoscopy. I have had severe GI issues for many years= many colonoscopies with inadequate and sickening prep with jugs , Mira lax etc. This year I got SupPrep. The best so far and good results.

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@astaingegerdm

I recently had another dreaded prep for colonoscopy. I have had severe GI issues for many years= many colonoscopies with inadequate and sickening prep with jugs , Mira lax etc. This year I got SupPrep. The best so far and good results.

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Yes, indeed..☺

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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!

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Oh…gosh..I'm sorry you had that experience with Supprep. I do remember drinking it slowly..I think it have a time frame, can't remember. I just remember I loved it, and it worked very well. Will definitely use again. I just remember the nurse at Gastros saying not to gulp it down.

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Take this for what it is worth – and you may know some of this already – the report is YOUR medical record and you can do with it what you will. Ask for it (ask for the complete report, usually on a CD and if they don't have that, what do they five as complete) THEN take that to another md who you do trust and get a reading. I think these guys are pretty competent in doing the procedure (just my thought) – it is the interpretation that is nuanced. You can either pay out of pocket – i am guessing $200+/- (remembering it will go to your deductible, i think) or wait til you have met your deductible and then go in at no cost.

Just a thought.

Val

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