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Ulcerative Colitis
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Posted 8/19/2016 10:25 PM (GMT 0)
Hi all. I just spoke with my gi doctor Wednesday about my IBD test results. They showed indicative of ulcerative collitus. He wants me to have a colonoscopy but can't get me in until September 20th. He prescribed me LIALDA with the hopes that it starts healing while I wait. I'm only 29 I can't believe I'm having to have a colonoscopy. Dang insurance won't cover it either since I'm under 50...but I digress...

My ma8n concern is though if I start taking the meds and they work...can that make it hard for him to see the issue when we do the colonoscopy in a monto?

Also, what will he find with the colonoscopy? This all started when I started having stomach pains a couple more the ago. I've always had bad cramping and diarrhea [for like 10 years] and thought Ithat was just ibs. If I have an ulcer a colonoscopy won't see that right?
Posted 8/20/2016 3:27 PM (GMT 0)
Hello there. Sorry you are experiencing UC symptoms.

Yes, you are correct. If the it is inflammation and it clears before a colonoscopy, it can make it harder to definitively diagnose UC via a colonoscopy. I was lucky enough to be able to have my first colonoscopy almost immediately after I began bleeding for the first time. I had a fairly definitive diagnoses right away. My sister on the other hand, appears to have very mild UC and, after two years, she has still not received a definitive diagnoses. In part for the reasons you are describing, as well as for other unrelated reasons. At the beginning of UC, your colon does not exhibit the scarring that say, mine exhibits - no doc with eyes would look at my colon and say I don't have UC :) Long story short, hopefully you will walk away from your procedure with some clarity but sometimes it takes longer to gain such insight. And even then, misdiagnoses is possible.
Posted 8/20/2016 3:32 PM (GMT 0)
Oh, and yes, as soon as you have a UC diagnoses (or a suspected one) most insurance companies will no longer cover any colonoscopies. You would think that UCers would have an even greater need for preventative cancer screening and so insurance would want to encourage us towards the procedure all the more - but not so ..... welcome to the brutal world of preexisting conditions in the USA.
Posted 8/20/2016 3:48 PM (GMT 0)
I never had a problem with insurance coverage for scopes. Insurance always covered at the rate of coverage... So, if I had a $500 deductible, I paid that, and 10% copay up to $2000, I'd end up paying $200 there (approximately). The I was $1800 from paying nothing for the rest of the year.

I was diagnosed around 26. I opted for a sigmoidoscopy instead of a full scope the first time, they found a tiny bit of inflammation in my rectum, which was diagnosed as proctitis. My GI didn't give me any drugs when I first met her, she assumed I had hemorrhoids that were causing the bleeding. We scheduled the scope from there and she found inflammation. If you take pills and it clears up, you're correct, you could end up not seeing much, and it will be harder to diagnose - it really depends on the severity.

What was the "IBD test" you took? Those types of blood tests are often not covered by insurance and they are very expensive. They are also not considered accurate - maybe there is still hope that you don't have IBD...

How are your symptoms? If you're really struggling, waiting to start medication can be torture.

The scope, they are looking for signs of UC. Active inflammation or signs of past inflammation. Scarring, infectious causes, mucous, polyps. They will take biopsies and hopefully they can find the source of your symptoms. I would think your insurance would cover it since it's suspected that you have IBD.

Did you do stool tests?
Posted 8/20/2016 4:45 PM (GMT 0)
Sorry let me clarify. Insurance will cover scopes for UC - usually applying the plans deductible and/or coinsurance etc.

The conundrum I was referring to is this: many plans offer FREE preventative cancer screening scopes for those over 40 (as my plan does). However, if you have a UC diagnoses, you will most likely never be eligible for this free, preventative scope.
Posted 8/20/2016 5:31 PM (GMT 0)
My insurance won't cover a colonoscopy until age 50. Irregardless of the reason why. I have to meet my deductible before they pay anything.

I haven't had any bleeding. I've always experienced somtach cramps and immediate need to go #2 after some meals. But about 2 months ago I stared experiencing occasional stomach pains.

On a side note I've been exercising and eating better since january. I've lost 50 lbs. I'm still overweight at 300lbs. I had hoped my healthier lifestyle would have helped my issues.

So should I not take the medicine then? Can you have something like an ulcer and just have blood tests show indicative of UC?
Posted 8/20/2016 6:14 PM (GMT 0)
So should I not take the medicine then? Can you have something like an ulcer and just have blood tests show indicative of UC?

I think you should take the medicine because the biopsy should indicate whether you have UC even if the visual of your colon don't look inflamed. Blood tests are not a definitive diagnosis for UC but can indicate a need for a colonoscopy for more information. You will not be magically rid of UC by Sept 20 by taking Lialda for a month.
Posted 8/20/2016 8:32 PM (GMT 0)
Since your insurance wont pay , how about a sigmoid test instead. Less expensive and you don't have to be asleep. I've had them. Not bad really but certainly uncomfortable. UC starts at the rectum up. They should be able to get biopsies. Lialda is not going to cure you in a month. There is no cure. Biopsies will still show disease . Is it they don't cover or you have to meet deductible? Hope you get some asnwers.
Posted 8/20/2016 8:45 PM (GMT 0)
I have to meet deductible. After this procedure I'll be within 1000 of that. Which is the silver lining I guess.
Posted 8/21/2016 5:07 AM (GMT 0)
I think your doc will still be able to see if you have UC after taking the meds. In my personal experience, there have been times when I was in remission, having no real symptoms, and the doc still said there was active disease in my colon.

As far as insurance, any colonoscopies you have from here on out will be considered "diagnostic" instead of "preventative," so they will be subject to your deductible and co-insurance. There will be no preventative colonoscopies for any of us who have been diagnosed with IBD.
Posted 8/21/2016 5:11 AM (GMT 0)
And let me add that my last scope two years ago cost around $6000 between the facility, Doctor, anesthesiologist, and the labs... So my cost was about $1200. I do these every two years currently, and soon it will be annually. Yay for me. sad
Posted 8/21/2016 4:26 PM (GMT 0)
A side note re. the cost of colonoscopies. This year I decided to try self paying for a colonoscopy in Canada rather than having my GI doc do it in the US. The main reason I chose this is because after my insurance broker bought my plan for me this past year, I found out my GI is not in network (my bad, but I did ask the broker to check this out for me :(

Anyhow, look at this - the TOTAL Canadian bill was 900 CAD or about 690 USD. That included the lab fees for the biopsies, all docs and facility fees. That was WITHOUT insurance copays etc. Fully self pay.....do you think we are getting scr*****ed here in the US ? I would say yes.

The drawbacks of this way of handling my yearly screen were - lessened of continuity of care, and, had there been complications, I would have been on the hook for these costs (which, while it is an unlikely possibility, is a considerable risk).

Next year I will probably have my scope done by my GI doc in NM, for a whooping cost :0 primarily because I will switch insurers to one that has him in network and because he provides me with many courtesy phone consultation services and really, these procedures are the only time I pay him - he helps me so much I want to make sure he understands my appreciation and gratitude. But this was an interesting experiment and certainly reinforced my opinion that our US healthcare system is sadly challenged.
Posted 8/22/2016 7:52 PM (GMT 0)
A standard ulcerative colitis diagnosis involves:

1.) A negative stool test result for pathogenic causes to your symptoms (such as c diff).

2.) A scope with biopsies, which is either a colonoscopy or a flexible-sigmoidoscopy.

We get scopes when we're in remission (that is don't have symptoms) and when we're flaring, and signs of chronic illness are always present. Biopsies show undeniable signs of chronic illness, regardless if we feel fine or bad. This is because the repeat cycles of healing and inflammation irreversibly alter the cell structure and blood vessel pattern in the lining of our large intestine. Usually, blood vessels are in a very orderly, predictable pattern. In an IBD patient, those patterns are irregular due to repeat heal/inflame cycles. Cells just look darn weird in IBD patients, cell walls are thicker, there's weird gaps between cells, all because it's a hostile environment for a cell to grow in with chronic inflammation. Under a microscope, the intestinal surface is composed of hills and valleys. In medical jargon, the valleys are known as "crypts", and with an IBD patient those crypts are commonly clogged with cells that don't belong there (known as crypt abscesses filled commonly with lymphocytes or white blood cells).

So, definitely take your medications as prescribed by your doctor. As I'm sure your symptoms were troubling enough to seak a diagnosis. Your medications can indeed bring relief to those symptoms. Your colonoscopy will show signs of UC and IBD if that's what you truly have.

Good luck, I hope you feel better soon and get a diagnosis.
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