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Is this scope necessary?

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Ulcerative Colitis
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Posted 8/27/2019 8:46 PM (GMT -6)
Next appointment is to show up prepped for a full colonoscopy in October. I am thinking of canceling unless I am given a good reason for the procedure or the doctor won't continue to treat me without the scope.

What new information can be gained? This will be #5 in 9 years and they are all the same: inflammation, even without bleeding, and no surprises in the pathology reports. There have been no polyps or pre cancer to follow. The last one (14 months in October) was traumatic and he is giving me Miralax this time. This could turn into a case of doing more harm than good.

In my one consult with an IBD specialist it was mentioned that inflammation can be followed with calprotectin which was 1277.2 a few months ago. Next is a biologic which no one wants but unending delay is not the answer either. We have been talking about a biologic for well over a year. My significant inflammation is obvious--major frequency, blood--with some temporary relief from short bouts with Prednisone. It's an endless, repetitive loop.

Decline or comply?
Posted 8/27/2019 10:59 PM (GMT -6)
I’m sorry you are having such a hard time. I don’t have an answer, but I did cancel my colonoscopy six months ago because I felt so anxious about it, and there were other stressful things going on at the time. I just had the colonoscopy two weeks ago, and don’t really understand how important it was. I don’t regret giving myself some time.
Posted 8/28/2019 6:55 AM (GMT -6)
>>doctor won't continue to treat me without the scope
Your doctor feels this test is important and you sound very against getting it (based on your post).

How quickly could you get in to see a different doctor, should you choose to decline? That would be the flipside, records need to be transferred to another doctor, a new patient in-office-consult scheduled, and that is a process that can take 2-3 months in some areas. You are currently flaring, so who knows if you might get worse between now and then and need a doctors help. There's some risk in this approach, whether or not you are willing to accept that path is entirely up to you.

You are 9-years into this illness, and soon a member of the annual colonoscopy club for colorectal cancer screenings.

I would get on the biologic asap, if it were me.

Tough choice! I've said no to endoscopy before, although never under threat of "I will not have you as a patient if you say no" circumstances. I will decline a colonoscopy at times, and suggest a flexible-sigmoidoscopy as an alternative and they often except that as a compromise. One approach you could suggest. Flex sigs are easier prep, just two fleet enemas (one is 2 hours prior to procedure, the other is 1 hour prior) and you can eat the day of the procedure (no drinking horse laxative and crapping your brains out). I get the flex sigs without sedation, and am in and out of the procedure area very fast.

Other than this ultimatum, do you like this doctor? Is he/she a doctor you work well with? The doc sounds a bit like a dictator with this ultimatum, not sure if he/she is just frustrated or just a jerk in general and worth kicking to the curb, anyways.
Posted 8/28/2019 10:58 AM (GMT -6)
I'd have the scope. The doc may want it to pave the way for you to move to a biologic. Your sig says you are "elderly"* .. I don't know what the rules are regarding moving to biologics if you are on medicare.

But even without the biologics consideration, you have had ongoing inflammation for 9 years. Long term inflammation can contribute to colon cancer. Even though all your previous scopes didn't indicate cancer, that doesn't mean the next scope won't. Your last scope was over a year ago and to me it sounds like you should be getting one every year at this point. 9 years is a long time with inflammation.

I've been freaking out being in a flare for almost 2 years now and am having a scope at the end of September. Previous scope was in June 2018. I don't know how many I have had since I was diagnosed 6 years ago, but I would guess it's probably been about 5 already -- 1 when I was diagnosed, 3 when I was flaring (including 2 within 6 months of each other when I went for a 2nd opinion) and 1 when I was in remission on Entyvio..

No one likes scopes, but with this disease it's a necessary evil sad

*If elderly means you are in your 80s there could be other considerations for avoiding a scope. Talk with your doc.
Posted 8/28/2019 4:19 PM (GMT -6)
what meds/treatment are you using on a daily basis ?
Posted 8/28/2019 7:21 PM (GMT -6)
Thanks everyone. So I guess yet another scope isn't such a terrible thing.

To be clear, the doctor did not say he would not continue treatment without the October scope. I haven't asked him yet. Our next meeting was supposed to be with me prepped and lying on my left side. Now I have an appointment to talk to him next month and can find out why he wants the procedure, why the biologic delay.

There are not a lot of local gastroenterology choices and I trust this one. He sent me to a teaching hospital for a consult and those IBD specialists seems to be a lot more enthusiastic, if that's the word, about the disease and aiming for remission.

Current meds are balsalizide, daily rectals. Over the last few years Prednisone/Hydrocortisone use has been creeping up.
Posted 8/28/2019 7:22 PM (GMT -6)
After 10 years (I think 9 counts for elderly) yearly scope to screen for cancer is recommended. It is not primarily to track inflammation.

You can ask if the purpose is screening. You can suggest you want to screen at 2 year intervals. But 18 months is close.

Unless the doc said they would refuse to treat you without scope, best not to assume. Ask. Ask if you can accept the risk of less frequent cancer screening.

good luck
Posted 8/28/2019 9:13 PM (GMT -6)
If I recall from your previous post you are not against a biological but are just waiting for your GI to make a decision?

It may be he wants one more scope before deciding? I don’t understand why. Maybe as a baseline for starting you on a biological? Maybe to make sure insurance will cover it?

I was told Medicare doesn’t require pre approval for biological. That was the nurse at the time. I assume she knew what she was talking about. Nor do they require you to fail “cheaper” medication before going to a biologic. They didn’t with me anyway. I’ve heard others were required to fail remicade or Humira before getting approved for entyvio. I went straight to it.
Posted 8/29/2019 5:45 AM (GMT -6)
Sorry, I'd want to know the reason and the benefit to you.

GIs in the US have two board recommendations for scopes in UC: 1. diagnosis and 2. cancer surveillance at periodic intervals after 10 years.

Scoping to see disease activity is poor practice. Instead, it's recommended that GIs treat patient symptoms.
Posted 8/29/2019 7:03 PM (GMT -6)
FlowersGal: Your story gives me inspiration and hope. The IBD specialist recommended Entyvio and your experience makes me want to get on with it.

Seconder: Thank you for the clear, easy couple of sentences on which to base my questions. (I should get a tattoo?) I will see the GI, pre scope, in a couple of weeks.
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