Ok here I am back with more questions.........

As earlier stated, husband had pancolitis in 2013, meds cleared all symptoms in less than a week and he just had a checkup colonoscopy in Oct 2018. His first stool he had blood on tp and thereafter every stool. Two weeks ago doc saw him, upped his mesalamine, added a short course of low dose pred and flagyl.

After 2 days the bleeding stopped and has stayed gone. Two week follow up today and doc is strongly insisting on an abdominal CT and suddenly says colonoscopies miss a lot of things and there is a 20% increase in cancer of the colon in UC patients and he just really needs to take a look another way. It has only been 4 months since the colonoscopy.

Husband's colon health was perfect for 5 years until the follow up 'scope and we just don't think it was a coincidental flare as he had no other symptoms like urgency, frequency, pain or diarrhea. We think maybe the scope irritated a spot in the colon or the 2 areas where pseudopolyps (determined benign) were snipped were irritated and bleeding as he is on Plavix so bleeding can easily happen with that.

I guess I really want to know if the CT virtual colonoscopy is better than the regular one why don't they just do the CT one and not risk a peforated bowel and the indignity of drinking the gallon of junk, then pooping all night and then having the invasive implement stuck up your bum?

Thanks for all your knowledge and help to all of us free of charge.

April

I would say get a 2nd opinion about getting another colonoscopy after 4 months. The trouble with that advice is that the 2nd doctor might insist on his own colonoscopy. At least that is what happened to me when I switched GIs a few years back.

Ordinarily a regular colonoscopy is superior since it can take samples but since your last one was not very long ago you might be able to request a virtual colonoscopy. After all the polyps were already addressed.

This forum has numerous accounts of flares beginning right after a colonoscopy. I was deep into remission when I decided that I needed a colonoscopy since it had been some time since my last one. Soon I started having diahrrea again.

But when I looked at the ingredients of the prep I saw junk like maltodextrin, polisorbate 80, and other of my sure-fire triggers for inflammation.

Getting back to your maintenance meds should help you to quickly return to remission.

I am not a doctor so I won't give advice. But my last GI fired me as a patient because I refused to take his prescribed prednisone.

You could gather all your colonoscopy records from your old GI and show them to your new doctor. And mention “you weren't having any trouble at all (other than the bleeding that has stopped now) and had just gotten a clean report in Oct(no real polyps or tumors etc) “. Hopefully he will see things your way.

Generally a colonoscopy is the gold standard for diagnostic tests for UC. If you add contrasting dye to it, a chromocolonoscopy, then it is better still at finding anything abnormal to the surface. I'd argue a chromocolonoscopy is far superior as it's flat-poyps and abnormal cells, that is a dyspalasia, are the biggest risks.

I'd call BS on the xray being superior. There are valid reasons for using xray, such as to diagnose small bowel inflammation or to look for thickened intestinal walls, things a colonoscopy cannot do. However, I am highly skeptical that an xray would find surface-cancer better than a colonoscopy would.

Right now, your husband is 6-years into his UC diagnosis, which makes him very low-risk for colorectal cancer (unless there is a family history of CRC or prior dysplasia seen in a prior colonoscopy). As decades since diagnosis is a big factor in our CRC risks, at 10-years in our CRC risks increase slightly, more so at 20-years, more still at 30-years since initial diagnosis. Disease severity is the other factor in CRC risks, with the most severe cases having higher risk than those with milder seventies.

april55 said...
As earlier stated, husband had pancolitis in 2013, meds cleared all symptoms in less than a week and he just had a checkup colonoscopy in Oct 2018. His first stool he had blood on tp and thereafter every stool. Two weeks ago doc saw him, upped his mesalamine, added a short course of low dose pred and flagyl.

After 2 days the bleeding stopped and has stayed gone. Two week follow up today and doc is strongly insisting on an abdominal CT and suddenly says colonoscopies miss a lot of things and there is a 20% increase in cancer of the colon in UC patients and he just really needs to take a look another way. It has only been 4 months since the colonoscopy....

It is hard to go beyond the general responses you got already without more understanding.

I am not clear from what you wrote what was seen on the scope. Some biopsies were taken and that may be related to some short term bleeding. But how much inflammation was seen? They only tend to biopsy in inflamed areas.

I am wondering if your husband typically has few symptoms even when there is inflammation. For one, nobody goes from pancolitis to "all inflammation gone" in a week. Nobody. Some people who don't have symptoms proportionate to inflammation, may go down to zero symptoms after a week on meds. But you can bet it took longer for the meds to clear the inflammation from the entire colon. Maybe they never completely cleared it, and since there were no symptoms you never knew.

The "remission" was based on symptoms, aka clinical remission. There was no followup scope to confirm histological (tissue level) remission. Worse case, there was under-treated inflammation for 6 years.

So it is hard to conclude "perfect health". Maybe, maybe not. If the new scope showed areas of active inflammation, then likely it has been there for all 6 years.

An important step is to get the report on scope and the separate report on the biopsies. If the biopsies showed active UC, not quiescent, then the doc may be responding to finding active UC in a patient that had assumed to be in remission. A little bleeding after scope/biopsy is typical, and not generally a reason to up mesalamine, add a course of pred, and also introduce a strong antibiotic. It reads like you think the doc made these changes only in response to the bleeding. You need to ask if it was in response to what was seen, or what he later read in the pathology report.

IF he did not see inflammation, and only upped long term med and added short term meds to respond to bleeding, and now only wants to do the CT in an abundance of caution (or maybe he owns the CT machine), then fine. No, it is likely not needed.

But, if he came to understand that there had been over half a decade of under-treated inflammation, and has a more case-specific concern about colon cancer risk, then the CT starts to seem more justified.

Get the reports. Ask if he thinks the apparent 6 years of clinical remission was likely not a true remission. Ask if he has case-specific concerns that justify the CT, or if the dual use of scope and CT is just his standard of care.

Get these answers, and then make a decision.

good luck

Post Edited (DBwithUC) : 2/7/2019 2:47:44 PM (GMT-7)

I believe scopes can irritate things in there and increase flare symptoms. The prep is also irritating. I find it very weird he is telling you CT scans can find things missed in a colonoscopy... Usually, a CT scan might be done first and then a colonoscopy. It sounds like the doctor is worried he missed something. I personally would find a new doctor and tell them all of this.

I find it weird too!
I’m at high risk colon cancer surveillance since 2015:
- I have personal history of precancerous polyps (10 mm- 20 mm)
- My sister is a colorectal cancer survivor.
- I had Ulcerative Colitis for more than 16 years.
So I have to do annual colonoscopy, but I never had this CT scan.

Ok final update for now anyway.
Husband called the schedule nurse back and she was totaling agreeing with all his objections to a new expensive (co-pay wise) test since the meds took care of the bleeding he was having and told him the authorization for the CT was good till May 9th and he could just wait and if he had any more bleeding before then he could call her and she would schedule the test or he could do it himself.

He told her he didn't want doc to be upset or fire him as a patient and she told him not to worry as she would find him a new doc on the 2nd floor (which is where the other 8 docs in the practice work).

We certainly got the impression without her actually voicing it that it was an overly cautious reaction.
One last note.......his nurse tried to steer us to a different doctor a couple of appointments ago when we were in the exam room alone with her. She didn't say anything bad about our doc, only that there was a really good one in our network that was closer to our home. Makes me wonder now though.

Thanks so much to everyone who responded. It is so nice to have others that are more knowledgeable to bounce concerns and questions off of when you don't feel like you got all the answers from the medical professionals.