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

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, 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

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 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 ..