Pouchoscopy frequency

@Jan Dollar posted:

There have been a number of threads over the years about how frequent our follow up pouchoscopies should be. I had my pouchoscopy last week and heard back from my GI today. She said biopsies showed no evidence of cancer, inflammation or infection and my next follow up scope should be in 3-5 years.

For background history, I was first diagnosed with severe pancolitis at age 15 in 1972. I had my pouch surgery in 1995 at age 40. I have never had dysplasia, but have had chronic pouchitis, now in remission with Inflectra (biosimilar of Remicade) and Imuran.

So, as you can see, there is no “rule” that we all need to be scoped annually. It depends on your specific case. As an aside, since I chose not to have sedation, my copay was $10 (but that is the Medicare with Advantage plan).

Jan

How is the pouchoscapy with no sedation? I just scheduled my first one and they want to scope me with no sedation. I'm a bit nervous to be honest

$10?! Wow! And thanks for sharing that info.

It was fine without sedation, but to be honest I have only had colonoscopies with sedation. So the whole procedure was 10-15 minutes total. There was a couple of minutes of discomfort from the gas that gets pumped in. Just some crampy pain I could deep breathe through. Biopsies were taken, no pain there, just a tugging sensation here and there. I watched the whole thing on the monitor. Then they took me to the recovery area where everyone was snoring. They gave me my clothes and I got dressed after using the toilet. I drove myself home, picking up a hamburger on the way. Been doing this way since 1996.

Jan

@Jaydog posted:

How is the pouchoscapy with no sedation? I just scheduled my first one and they want to scope me with no sedation. I'm a bit nervous to be honest

Jaydog: I did a review and Frequently asked questions post about my experience with no sedation. Here it is, it might make you feel better about everything, here it is

https://www.j-pouch.org/topic/...ntly-asked-questions

@Jan Dollar posted:

There have been a number of threads over the years about how frequent our follow up pouchoscopies should be. I had my pouchoscopy last week and heard back from my GI today. She said biopsies showed no evidence of cancer, inflammation or infection and my next follow up scope should be in 3-5 years.

For background history, I was first diagnosed with severe pancolitis at age 15 in 1972. I had my pouch surgery in 1995 at age 40. I have never had dysplasia, but have had chronic pouchitis, now in remission with Inflectra (biosimilar of Remicade) and Imuran.

So, as you can see, there is no “rule” that we all need to be scoped annually. It depends on your specific case. Plus, as more data is gathered over time the surveillance recommendations can evolve over time. As an aside, since I chose not to have sedation, my copay was $10 (but that is the Medicare with Advantage plan).

Jan

$10...LOL. my pouchoscopies are about $2,000 out of pocket, I hate our healthcare system. why should one person pay different than someone else, its the same procedure.

Remember, I am on Medicare, with an HMO Senior Advantage plan. Before that, I had a $4700 deductible each year. But, on that plan, if I had reached my deductible my copay would be $30 for sigmoidoscopy without sedation. This is why I am in favor of HMOs. Personally, I think that PPOs are a profit racket. But, that is just my opinion.

Jan

I think my doc suggested one every other year unless something came up that he was concerned about. I chose sedation bc I had inflammation and thought it was going to be painful and, well why not 😉 In my case, since I was sedated, he was able to go higher up in the small intestine to check out some kinks that were causing me problems from previous obstructions. So it was helpful, in that sense, to “map” it out higher up.

My doc goes up into the terminal ileum too, but not that far. But you are right, if there is a lot of inflammation, there is more discomfort. I have my share of scopes with pouchitis.

Jan