colonoscopy questions

Jaime · Post by **Jaime** » Tue Sep 01, 2015 10:02 am

Has anyone here had a bad experience with a colonoscopy. I am in a really good place for the first time in a decade and Im afraid the prep will destroy me. The stats on infection and perforation are not too impressive either. Common sense tells me I need to do it my gut instinct is telling me its a huge mistake.

jlbattin · Post by **jlbattin** » Tue Sep 01, 2015 10:45 am

I've had 3 in 15 years time and everything was smooth sailing...............I have to have one every 5 years because of my high risk of colon cancer that runs in my family. Is this your first? Or how long since you've had one?

The prep isn't wonderful, but I didn't have any trouble.

Chemgirl · Post by **Chemgirl** » Tue Sep 01, 2015 11:14 am

So far, it hasn't caused any issues with the MC, but I get how you could be hesitant.

The prep isn't fun, but I actually found MC symptoms decreased for a week or so afterwards. Try to stay hydrated and chances are you should be ok.

Tor · Post by **Tor** » Tue Sep 01, 2015 1:18 pm

I've had 7 colonoscopys over the last 18 years. My D. is usually a bit better for a day or two after colonoscopy, probably due to lack of allergen exposure during the prep. Everything has been smooth, except for some pain the first time when they were conservative with sedation. I think you need to go through with the exam.

Be sure that they take enough biopsies (at least 6) to be able to rule MC in or out with some certainty. If it's not MC, I think your problems digesting fat is compatible with Bile Acid Diarrhea as well. A lot of studies have shown that approximately 1/3 of patients previously diagnosed with IBS-D visiting GI specialist have Bile Acid Diarrhea, either ideopatic or secondary to IBD/MC/inflammation. Bile Acid Diarrhea can be treated with bile acid binders. I think this british newspaper article is quite good:
http://www.dailymail.co.uk/health/artic ... -pill.html

--Tor

Kelly from Canada · Post by **Kelly from Canada** » Tue Sep 01, 2015 1:36 pm

After waiting 2 years to find out why I have D.... decided to listen to the Doc.... it was easier than I anticipated, but not the best 3 days of my life.
At least I have a diagnosis now of C.C. Although pathologist said it was a toss up between C.C. & L.C.
So now I can add that to primary biliary cirrhosis (autoimmune liver disease) .

Jaime · Post by **Jaime** » Tue Sep 01, 2015 1:48 pm

Thank you guys so much for the responses. I have been very suspicious of the bile acid diarrhea since I started researching this. Although i have decided not to take steroids I would be open to the Questran. Can the bile acid condition be diagnosed during a colonoscopy? All my blood test, liver enzymes and gall bladder scans were normal.

I have never had a colonoscopy. I work in health care and my Doctor and Nurse friends are ready to strangle me for my refusal to see a Doctor up until now. Im trying to work up my nerve to do the colonoscopy. Its going to be a process. Just seeing the Doctor was a huge step. One thing I dont understand is why a person with daily chronic diarehha needs the same prep as soemone who stays constipated. The last bad flare I had after a stomach virus was hell on earth for a month. I have visions of the prep and procedure setting off something like that.

Post by **tex** » Tue Sep 01, 2015 2:07 pm

Jaime,

The colonoscopy will not provide any clues about the possibility of bile acid malabsorption, but regardless of whether or not the diagnosis is some form of MC, a bile acid sequestrant can be tried as the initial treatment. If it helps, then obviously bile acid malabsorption is at least part of the problem, and if it doesn't help then you haven't lost much other than some time.

Regarding cleanout, one time between procedures, I decided that rather than to have to go through the cleanout process again after just going through it, I would play it smart and simply live on a diet of clear fluids and jello between procedures. So all I ate for 2 weeks was clear broth, plain jello, water, and an occasional 7-Up or Sprite. All I got out of it was almost continuous hiccups, because they insisted that I had to use the GoLytely anyway.

And of course I lost about 20 pounds of additional weight that I didn't need to lose.

Tex

Lilja · Post by **Lilja** » Tue Sep 01, 2015 2:23 pm

Hi,

You can do what I did. I told them that I was afraid of the pain, because I had experienced huge pains during colonscopy 1 year earlier (very narrow passages), and that I needed to be taken good care of.

I also told them that I needed several biopsies, and not the usual 6 (as they had found nothing last time). They were a bit shocked by my demanding attitude, and looked at each other. But they did what I told them. And, this second time, they collected enough samples to be able to give a diagnosis (CC). The clean-out did not cause any problems, in fact I felt quite relieved because my stomach was emptied, and did not cause any D or discomfort afterwards.

PS: We, the patients, have to be much more demanding than we normally would be.

Lilia

Tor · Post by **Tor** » Tue Sep 01, 2015 2:29 pm

In Europe bile acid diarrhea/malabsorption can be diagnosed with a so called SeHCAT exam. You swallow a pill with artificial and radioactive bile acid, and then they measure how much is left after a week. With BAD/BAM most of the artificial bile will have flushed out through the colon. I'm one of the few in Norway (probably under 100) who have taken this underutilized exam.

It is possible to diagnose BAD/BAM by analyzing feces, but I don't think this is done much anywhere. As Tex writes, it's quite common to diagnose it by trial of cholestyramine (Questran) or another bile acid binder. BTW, colesevelam is an newer and more effective bile acid binder than cholestyramine.

It has puzzled researchers why bile acid binders seems to have effect on MC and IBS-D patients without BAD/BAM. The theory is that they bind allergens, toxins and/or bacteria in addition to bile. With diet changes, I'm now able to keep my CC in remission on a low dose of Questran. But if you choose to try it, make sure you try a large enough dose.

Good luck with the colonoscopy!

-- Tor

Jaime · Post by **Jaime** » Wed Sep 02, 2015 3:56 am

Thank you for the responses. It helps to hear that the prep and colonoscopy didn't start a horrible flare. The information is very helpful. So what you guys are saying is just trying the drug for bile acid is diagnostic itself. I have read stories of people who had a dramatic turn around after trying cholestyramine . I was not aware there was a newer version and will read up on it.

Tex, why so many colonoscopes ? I cant imagine what you have been through.

Jaime · Post by **Jaime** » Wed Sep 02, 2015 4:05 am

Tor, since much of my reading is about herbals and holistic cures I am remembering reading something about why the Questran works for many types of a diarrhea. Its as you said it binds the toxins. Herbalist are going on the idea there has to be a bacteria, fungus, parasite or a reason for the diarrhea even if its not detected. Some even recommend the Questran while on a herbal regime to kill bad critters as a way of binding and carrying it out of the body. Quite honestly its probably the only pharmaceutical I would consider taking. The casual use of steroids by Doctors shocks me.

Post by **tex** » Wed Sep 02, 2015 9:31 am

Jaime wrote:So what you guys are saying is just trying the drug for bile acid is diagnostic itself.

It's not really diagnostic, because it often works to suppress D, even when bile acid malabsorption is not the primary problem. Just as the old saying goes about love and war, all is fair when treating MC. We learn to never look a gift horse in the mouth.

Tex