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I agree that for you a scope may be out of the question financially unless you can find a source to pay for them; however, I do believe that routine scopes are important.  I've know of quite a few people, including myself, who have felt perfectly fine and had something discovered during a scope that would never had been caught otherwise. (For me personally it was ulcers above and at the pouch connection.)  There area also many times when nothing is found in the pouch and you get a good report.  There is something freeing about that too, knowing everything looks and is acting as it should.

That said, I would talk to my doctor and see if there are any programs available to help pay for the routine scope.  A $1000 would be out of my price range too if we had to do this often and have it out of pocket. Yikes!

My GI put me on Imuran and Entocort (actually their generics). He also put me on Humira, but when that didn't work, Remicade and now Entyvio since I reacted bad to the Remicade.  I am suppose to see him in Dec. and I'm sure he'll order another scope to see if things are healing.  

Without the scope, I'd have never known I had ulcers. I feel fine, so I don't know if the treatments are working or not.

The general recommendations for frequency of routine pouchoscopies vary - anywhere from every 1-5 years depending what you read, though a lot also depends on your pre-op diagnosis. If your colon was removed due to cancer or high grade dysplasia, or if you had indeterminate colitis or Crohns was suspected, you may need to be scoped more often.  Obviously, scopes would also be indicated more often if you are having any ongoing symptoms or problems. I currently get a routine scope every 2-3 years, but you should discuss with your surgeon or GI a schedule that is most appropriate for you.

Last edited by Spooky

That’s pretty much what a scope is going to cost if you haven’t reached a deductible. However if you have any history of dysplasia or Pouch inflammation it would be foolish not to get scoped regularly. Tony Snow had a family history of colon cancer but didn’t get scoped and died from colon cancer that was probably treatable if detected. The Pouch cancer risk isn’t as great because the rectal cuff is the only portion of colonic tissue remaining, but if you ignore it you do so at your risk.

I get scoped annually due to history of dysplasia and 25 year history of Pouch inflammation and inflammation in the neoterminal ileum for 11 years.

The risk of avoiding follow up scopes is dependent on your original diagnosis and length of time since diagnosis. If you never have had cancer or dysplasia, your risk is lower, but not the same as the general population.

With a high deductible plan, you need to set aside money on a monthly basis to go toward your deductibles. Set aside about $100-200 per month. Stick it in an HSA account. That money will lower your taxible income “above the line” (like a payroll deduction). Then, next year you will have the money. The idea of a high deductible plan is not to avoid care. You wind up paying one way or another. You can also ask your provider to let you pay by installments.

No easy answers for sure.

Jan

My surgeon is extra cautious.  Eight years since original surgery, he wants me to see him every year for scope.  I am also doing a CT scan (last one ever) in a few weeks to double-check other organs.   I have to say that my last pouchoscopy, the insurance company didn't cover it as a "colonoscopy."   And with Obamacare, this is the kind of preventative surgery that would be covered, I believe.  They were going to charge me a bundle, but I was able to get the codes changed to "colonoscopy."  Just be sure to ask how the procedure is coded.

 

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