I have been dealing with Cuffitis for 4 months now. I have tried several different things but my most recent treatment was Tindamax antibiotics and canasa. I was feeling better but a recent scope showed I was still severely inflammed. Shortly after this symptoms did return. I’m now trying Uceris foam but just started a couple days ago.
Anyway biopsies came back today and they were positive for cmv. I can see some people had this when they still had their colon, but has anyone had it in their pouch? I guess they plan to treat with acyclovir but I haven’t spoken to anyone yet, I just saw that in my chart. How freaked out should I be here? I’ve only had my pouch for a year so I really don’t want to lose it 
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Please don’t freak out! We are playing the long game here.
I had high grade dysplasia in my rectum and now I have chronic colitis of the cuff. It was detected within 6 months after takedown.
I have been on Canasa for over a year and my symptoms and inflammation are in check.
I will continue to remain on Canasa indefinitely as I don’t want to go through another surgery….ever!
my scopes and cal protectin labs have confirmed no inflammation.
take your meds religiously and hopefully in time this will be just another chapter in your (our) ongoing saga.
Hopefully you’ll feel much better when the CMV infection gets managed.
Thank you new. I’m sorry you are having issues too. Unfortunately I tried canasa for 3 months and it didn’t help at all. Recently I was on Uceris and it was helping (at least symptoms hadn’t had any tests done). But now I was told I have to stop that due to the cmv infection. So now I’m without any meds while I wait to see what they are going to do about the infection.
scott- do you have any idea what the usual treatment is and how effective it is? My surgeon and gi are disagreeing on how to proceed and I’m just freaking out! There’s not a lot of info online about the infection period, let alone in a pouch.
CMV will go dormant for periods of time, but it can recur when it pleases. Antiviral medications can be used for immune-compromised folks, but most people just wait out an active period and it goes dormant, just like cold sores disappear. It might be useful to live as healthy a lifestyle as you can during an active period (and whenever else you can stand it), but this isn’t really evidence-based. Perhaps you could try the antiviral and see if it helps.