This isn't how pouchitis acts in my body, either. The nausea is a bit surprising to me - are you on any new medications or having heartburn? You could have more than one thing going on (e.g. gastritis plus cuffitis). I don't think you can count on Flagyl to reliably make cuffitis go away. The treatment for gastritis (if that's something you have) is stomach acid control (Zantac, Prilosec, etc.) for a few weeks.

A physical exam can help identify cuffitis. If you hit the ceiling before the examining finger gets to the cuff, that's more like a fissure.

Thanks Scott. I am starting to notice some improvement while on the Flagyl and am using Canasa suppositories at night in case it is cuffitis. I still notice the pain in my rectum though. It feels like it has gone down, but every once and a while I'll get a sharp pain. I have an appointment with Dr. Shen at the Cleveland Clinic on Friday so hopefully he can examine the area and see what's going on.

How did your appointment with Dr. Shen go?  It sounds like cuffitis to me.  I've had cuffitis with c.diff and without and you would know if it was c.diff because you've had it with your j-pouch. I use canasa for cuffitis and anucort also when I can tell there is more inflammation.

I had c.diff caused by Cipro when I still had my colon.  All of my doctors have told me to never use Cipro again too. 

It was cuffitis. I got re-tested for C. diff just in case, but that came back negative. I was prescribed Flagyl for 2 weeks and and Canasa 1,000mg at night for 30 days. I finished the Flagyl and have a few weeks left on the Canasa. My symptoms (bleeding, rectal pain, nausea) had all went away. Unfortunately, I made the mistake of thinking I was 100% and I had a few beers over the weekend (which I am normally fine to do). This triggered the cuffitis and I got some slight bleeding, rectal pain, and nausea back. Not like before, but enough to let me know the cuffitis is still there. I have obviously not had any more alcohol and have been trying to get a lot of sleep and watch my diet while I continue the Canasa. I am worried that if a few beers was all it took to trigger the cuffitis that when I finish the Canasa that it will just come right back. Dr. Shen gave me a Rx for another kind of suppository as well that you use 2x a day (I forget the name), but he said to try that one for 30 days if the Canasa does not clear it up completely. I guess I will wait and see how things go and try the other suppository if the Canasa does not do the trick completely.

It is fairly common to stay on Canasa long term, but not necessarily every day. Once in remission, you can taper off the frequency to whatever keeps symptoms at bay. But you need that daily dosing until things are back on track.

Jan

I only have around 2 weeks left on my 30-day supply. Because I am still experiencing symptoms, I wonder if I should leave a message with Dr. Shen and inquire into getting a Rx for Canasa long term, like for every other day. I have no refills on my Rx and am worried that when it runs out and I stop taking it cold turkey my symptoms will come back and then I'll have to wait a few days to get a hold of a doctor to get me another Rx.

I think asking for a refill to be added to your current Rx is reasonable. He may want to see you though if it isn't working well enough. The other Rx he ordered is probably hydrocortisone suppositories, which also works well.

Jan

I've been on canasa for over 2 years.  My GI said to taper down as he has some -pouchers have found they only need to use it several times a week to stay in remission.  I haven't reached that point yet but do miss taking it a day here or there with no problem. I think it also helps with my pouchitis too.  

You might just ask your drug store to contact Dr. Shen for a refill. That will take up less of his time and is usually more efficient for me to do. I took it for months before getting my cuffitis calmed down in 2012.

I've never felt that alcohol contributed to cuffitis but also haven't had much to drink as I am taking medications that say to not drink while taking. I do miss drinking every now and then so you might be able to have a few beers when feeling better.  It could also be that you can tolerate other forms of alcohol. You might want to try it again after your pouch is older.

Thank you both for the great advice! In my previous appointment, Dr. Shen said to take the Canasa 1x a day for 30 days and if that didn't get rid of it all the way, he also gave me a Rx for a 30 day supply of Anucort to try. The Canasa has definitely made me feel better. Its been about 4 weeks (I took Flagyl for the first 2 weeks as well) and I felt like my symptoms were all gone. Then, like I said, thinking I was for the most part better, I had a few beers and the next day my symptoms had returned by probably 50%. It took about 4 days but today my symptoms are about 90% gone. Who knows why the beer was such a strong trigger to bring them back, but I am definitely going to stay away for quite awhile.

After hearing your advice about staying on Canasa long-term, I am a bit reluctant to switch over to the Anucort completely if my symptoms come back after my Canasa runs out. If the Canasa is working it seems like I should continue to take it (or maybe take it in conjunction with the Anucort). I am going to call Dr. Shen tomorrow and bring up these options and ask what he wants to do going forward. When I run out of the Canasa in a week it would be nice to have a plan of what I'm going to do next, since I'm not better and 2 beers brought my symptoms back.

I think you are doing the right thing by calling him.  Anucort alone does help many with cuffitis but it didn't help me.  Canassa is very expensive.  One month of Ancort costs about what just one canasa suppository costs.  Maybe that is why Dr. Shen is having you try it too.

 It will be interesting to hear his plans for you so please let us know after you talk to him.  In the mean time, take care and try not to stress about it. 

I emailed Dr. Shen's nurse and she said to continue taking the Canasa every day until my symptoms go away 100%. I told her my symptoms were about 90% gone now since I for the most part feel better but seemingly little things can bring them back. They called in an additional Rx to my pharmacy. I haven't picked it up yet, so I'm not sure if they just gave me another 30 days or if they gave me more refills. I hope they gave me more refills so I can just go re-fill it if I have to continue longer than that.