Share this:
peabody88
@peabody88

Posts: 57
Joined: Sep 16, 2018

1st time colonoscopy - advice??

Posted by @peabody88, Wed, Sep 26 12:20am

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.

REPLY

Wow, you certainly do a lot of research, and that's okay, but try not to worry about the colonoscopy as a procedure very much, it's not that bad. I'll try to provide some input on some of your questions as somebody who has Crohn's Disease and has had quite a few colonoscopies. If you feel you need more information on specifics, you'll need to refer to your doctor about additional specifics on some of the tests you mention as some of your inquiries are more unusual for somebody going through a colonoscopy. Here it goes …

Your bowel and other rectal symptoms as described are not *necessarily* indicative of active IBD/UC and could be some type of infection going on with you. Usually with IBD/UC you'd be having persistent diarrhea, abdominal cramping, the blood would be more than just a spotting, you might be experiencing unexplained weight loss, etc. BUT it's good to check for it in your case, as IBD can manifest itself differently for each person, often with highly varied symptoms and degrees of those.

1. Medications to discontinue prior to the procedure should be listed on your prep information that is provided to you. But generally you'll have to NOT take any NSAIDs, no blood thinners, and no iron. I think some blood pressure meds and diabetic medications may also be on the list. Your doctor/nurse should be able to address the specific ones you have listed, but they do not ring any bells for me.

2. You will almost certainly have biopsies taken to test for IBD given your family history of UC. This would also include specifically biopsies of polyps that may be found and tested for cancerous cells. Larger polyps may be excised totally to reduce the risk of them becoming malignant in the future. A very large number of polyps would be an indication for concern but don't preoccupy yourself with that idea before the results come back. You may notice some blood in your bowel movements, and/or after passing the gas right after the procedure from biopsies and that's not unusual to be a worry for you. Ask your doctor's office in advance about the test for mast cells to make sure that is done to look for allergic reactions you think might need to be ruled out and to test for abnormalities that could indicate other problems. You may get some push-back on requesting specific tests but it's your body.

3. As a man I cannot really speak to your gynecological questions other to agree with you that it's possible to notice in the colonoscopy that you have a fistula opening in the colon that would have to be traced. Often a CT scan or better an MRI is done to do the trace of the tract of a fistula, but here is some more detailed information on what to think about: https://www.mayoclinic.org/diseases-conditions/rectovaginal-fistula/diagnosis-treatment/drc-20377113.

I am not aware of any liver related issues that can be checked for by colonoscopy.

You have enough going on in your body that it may be necessary to systematically rule out one or more possible maladies that could be on hand with you. The colonoscopy along with biopsies and the mast cell tests sound like a good area to look at what's going on with you. I'm sorry that you don't have the confidence in your GI at the moment and understand why you'd be going through this now given your situation, and if you don't get satisfactory explanations by all means go for a second opinion, especially if you can get referred to Mayo. My mother had gastric distress that was killing her years ago that was not diagnosed until after going to Mayo and found to have a blockage and intestinal looping. After a myriad of tests the specialists were telling her that it was all in her head … You are your own best advocate for your health. And good luck! 🙂

I understand what you are going through but if you are having a colonoscopy you should have more than the average number of biopsies and ask them to stain for and count mast cells and stain for and count eosinophils. These things are not done unless requested. I had urinary symptoms chronically as well and it turned out to be systemic mastocytosis which took more than 30 years to diagnose. The treatment for these varies somewhat from other inflammatory bowel and also different from celiac. At chapel hill they asked me to be off All medications for at least 6 weeks except immodium, pheneragen and hormones. They wanted to have a good picture of the baseline disease state without masking.

I'm wishing you well, @peabody88. I agree with much of what @guener has said. It is important to be an advocate for your health. Don't let the doctors deter you from seeking answers by their comment that stress is at the root of your problems. Get as many opinions as necessary to feel comfortable with your diagnosis and take it one step at a time.

I am a bit concerned, however, when you say, "Unfortunately, I don't have much confidence in the gastroenterologist/practice who will be doing the procedure" and it makes me wonder why you are having this procedure with the same doctor(s). Does your insurance allow you to make changes? If so, it might be a good idea to find a different GI practice where you could have more confidence. Does that sound possible for you?

@hopeful33250 – Thank you very much, Teresa. I tend to have a lot of faith in doctors, and not quite as much confidence in my self, which makes it very tough when our assessments aren't matching up.

You are absolutely right — in an ideal world, I wouldn't be doing this procedure with this doctor when I don't feel as confident in or comfortable with him. It's really a matter of an increasingly tight time crunch:
1. I had reached my out-of-pocket maximum in July, so everything since then has been 100% covered by insurance. However, that re-sets/starts over on Oct. 1, so after that date I'll be responsible for all the charges until I reach that $2,000 maximum again. My employer is also switching to a different, "unaffiliated" insurance, which I'm somewhat nervous about the level of coverage I'll be able to get with that.
2. I'm having repair surgery on Friday for a small incisional hernia in my umbilicus from my gallbladder removal surgery in 2016 (a decision based on experiencing some abdominal pain in the area + #1), and they recommend having the colonoscopy before that, otherwise I'd have to wait a few weeks to recover.
3. I don't have many FMLA hours left; once I run out, my employer is no longer required by law to continue my employment if I don't resume full-time work schedule. In addition, I'm having a hard time obtaining short-term disability pay without a diagnosis to point to.
4. Last, but certainly not least, I'M just very tired of feeling so poorly and just want to feel better.

Waiting to get into another specialist would almost certainly mean another two weeks to a month, so I'm moving forward with this doctor/practice for all of the above reasons. Does that make sense?

It certainly does make sense, @peabody88. You have analyzed the situation well and doing what is best for you at the time. Yes, anticipating changes in insurance is a difficult thing. I wish you well on Thursday. Will you let us know how you are feeling after you recover?

@guener

Wow, you certainly do a lot of research, and that's okay, but try not to worry about the colonoscopy as a procedure very much, it's not that bad. I'll try to provide some input on some of your questions as somebody who has Crohn's Disease and has had quite a few colonoscopies. If you feel you need more information on specifics, you'll need to refer to your doctor about additional specifics on some of the tests you mention as some of your inquiries are more unusual for somebody going through a colonoscopy. Here it goes …

Your bowel and other rectal symptoms as described are not *necessarily* indicative of active IBD/UC and could be some type of infection going on with you. Usually with IBD/UC you'd be having persistent diarrhea, abdominal cramping, the blood would be more than just a spotting, you might be experiencing unexplained weight loss, etc. BUT it's good to check for it in your case, as IBD can manifest itself differently for each person, often with highly varied symptoms and degrees of those.

1. Medications to discontinue prior to the procedure should be listed on your prep information that is provided to you. But generally you'll have to NOT take any NSAIDs, no blood thinners, and no iron. I think some blood pressure meds and diabetic medications may also be on the list. Your doctor/nurse should be able to address the specific ones you have listed, but they do not ring any bells for me.

2. You will almost certainly have biopsies taken to test for IBD given your family history of UC. This would also include specifically biopsies of polyps that may be found and tested for cancerous cells. Larger polyps may be excised totally to reduce the risk of them becoming malignant in the future. A very large number of polyps would be an indication for concern but don't preoccupy yourself with that idea before the results come back. You may notice some blood in your bowel movements, and/or after passing the gas right after the procedure from biopsies and that's not unusual to be a worry for you. Ask your doctor's office in advance about the test for mast cells to make sure that is done to look for allergic reactions you think might need to be ruled out and to test for abnormalities that could indicate other problems. You may get some push-back on requesting specific tests but it's your body.

3. As a man I cannot really speak to your gynecological questions other to agree with you that it's possible to notice in the colonoscopy that you have a fistula opening in the colon that would have to be traced. Often a CT scan or better an MRI is done to do the trace of the tract of a fistula, but here is some more detailed information on what to think about: https://www.mayoclinic.org/diseases-conditions/rectovaginal-fistula/diagnosis-treatment/drc-20377113.

I am not aware of any liver related issues that can be checked for by colonoscopy.

You have enough going on in your body that it may be necessary to systematically rule out one or more possible maladies that could be on hand with you. The colonoscopy along with biopsies and the mast cell tests sound like a good area to look at what's going on with you. I'm sorry that you don't have the confidence in your GI at the moment and understand why you'd be going through this now given your situation, and if you don't get satisfactory explanations by all means go for a second opinion, especially if you can get referred to Mayo. My mother had gastric distress that was killing her years ago that was not diagnosed until after going to Mayo and found to have a blockage and intestinal looping. After a myriad of tests the specialists were telling her that it was all in her head … You are your own best advocate for your health. And good luck! 🙂

Jump to this post

@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!

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!

@peadody88 I agree it is brutal drinking that stuff. I do shots of coconut water in between, only way I can get the prep down. It is a clear liquid. So the Doc said I could take shots in between to help swallow the prep. See if your Doc will let you do that???

Good Luck .. I wish you the best..
Jackie

Liked by peabody88

Wowza, this is fun. What kind of sick, twisted torturer came up with this — and what kind of sadistic twisted nut am I for agreeing to it? Lol.

@peabody88

Wowza, this is fun. What kind of sick, twisted torturer came up with this — and what kind of sadistic twisted nut am I for agreeing to it? Lol.

Jump to this post

@peabody88 trust me I feel your pain.. I had to have 4 colonoscopies in one year. Talk about a major torture session.. Lol.. Thats how I came up with coconut water shots.. Take a shot chug that stuff down take a shot and repeat..
It helps ..

@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….

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

Liked by peabody88, eliana5

@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!

Jump to this post

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

@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!

Jump to this post

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..☺

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.

Liked by eliana5

Please login or register to post a reply.