Pouch advancement is a good option for folks who can't find an adequate treatment for cuffitis. I'm not sure that I'd consider it for a second if Canasa were doing a good job.

Thanks for the perspective, Scott. You're right, as long as it's manageable with the Canasa, I guess I will just continue to take it indefinitely and at least have some peace of mind that  pouch advancement is always an option down the road if things start to get worse. Sometimes it's just difficult knowing that I'm still sick and if I skip even one day the cuffitis symptoms are back full force.

After I was in good control on Canasa, I asked about oral mesalamine to stay in remission. My GI agreed it was worth a try and I started taking sulfasalazine. This worked pretty well for me for about 15 years, and I only used the Canasa during flares. But now, after 20+ years with the j-pouch, my pouchitis and cuffitis are more resistant. I am on both oral and topical mesalamine, along with Cimzia and antibiotics, and still have pretty severe cuffitis and pouchitis. Less symptomatic, but lots of inflammation on my scope. 

Right now I am awaiting biopsy results and my GI will be discussing treatment options, perhaps Entyvio, 6-MP, etc.. Of course, if there is dysplasia, I am sure there will be a surgery referal coming. It's been 45 years since my original UC diagnosis, so nothing will surprise me.

Anyway, I digress. Ask about supplementing with oral mesalamine so that maybe you can reduce the suppository use.

Jan  

Thanks Jan! That's a great idea! If I miss one day of Canasa, the cuffitis is back, but once I take it, I'm fine the next day, so mesalamine definitely keeps it in check. If oral mesalamine also happened to keep it in check, this would obviously be preferable from a convenience standpoint and hopefully it would be cheaper, as one month of Canasa is $850!

You probably could use a health plan with better prescription coverage too. Of course, at $850 per month, it shouldn't take too long to reach your out of pocket maximum! I have a high deductible plan and always reach the deductible in the first month of the year. 

Jan

The cost was almost $600 a month when I took it. I had to pay for it out of pocket until my deductible was reached. I got the message "your insurance saved you $xxx dollars, which was the full retail amount similar to what you are paying. I quit using it last fall but still what you are paying sounds too steep! 

I never got off of it. But it did keep my symptoms down. If you can follow to every other day and to twice a week in remission that's what I was instructed to do.  Didn't work, I was like you. My cuffitis helped in the demise of my j-pouch.  Ask Dr. Shen about the possibility of your chronic cuffitis and strictures. Mine helped to form them because of the scarring of 5 years. My GI and surgeon are at Mayo. I was told a pouch advancement wouldn't help at that time as I'don't had it so long.

So, I think it is a good time to ask Dr. Shen about it now. I feel if I hadn't had the stupid cuffitis that introduced IBD into my pouch that I might still be using it.  Getting rid of the UC cells via pouch advancement sounds good to me.  

Before everyone jumps in to tell me that cuffitis is different than pouchitis - there are studies that show those with FAP and other non IBD reasons for j-pouches don't get cuffitis. It is theorized that pouchitis is a form of IBD.  Dr. Shen might have been one of the doctors that did the study.  It wasn't out of Mayo's. 

I currently have a HSA plan with a $2,600 deductible (the highest of the plans offered). The benefit is that everything is 100% covered after I pay this off, I just have to budget for this at the beginning of the year. I may try another plan with a lower deductible to see if it saves me money, it's just hard to tell because we unfortunately never know how many office visits, medications, and surgical procedures we may need.

Kevin, that is not too bad. I thought that you were saying that was the cost all the time (as in- not covered). 

Our HSA plan is also a $2600 deductible, then there is a copay after that. My biologic is $3000+, so that is why my deductible is reached in the first month of the year. If we stay on an HSA after our COBRA runs out this year, the deductible will go up to $9000. 

We had a few years of the zero copay after deductible, and it was pretty awesome.

When I crunched the numbers in the past, the out of pocket costs were similar for the various plans offered to us if we added in the premiums. But it was a tax advantage for us to contribute to an HSA.

Jan