Question for people with chronic pouchitis...what do your scopes look like? I had my second pouchoscopy (flex sig) done yesterday...2 1/2 years after my last one. The doc said my pouch looks great! No visual signs of pouchitis. I saw my pics and tissue looks nice and smooth. What's odd is that although I don't feel I'm in a pouchitis flair...I'm still very dependent on the antibiotics and they don't work nearly as well as they used to. I thought for sure I would have lots of inflammation. I know the biopsies may indicate there is mild pouchitis so we'll wait and see. Gotta say I was thrilled with my report, but very surprised. Very comforting to know that I am keeping the pouchitis under control and it's not destroying my pouch. The doc said to keep up with my normal antibiotic regimen.
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This happens to me also. My last scope they said my pouch looked great, but if I miss one dose of antibiotic I am dead in the water pretty much.

What antibiotic regime do they have you on currently? I am starting xifaxim this week.
jeane, i usually do 2 weeks of Cipro then about 3 weeks on Pepto Bismol (I stay on it as long as I can), and then 2 weeks of Augmentin. Depending on how I am doing, I will try to go back to the PB again before the Cipro. I used to stay on each one for closer to a month before switching, but I can't do that anymore. I threw in Xifaxan a couple months ago. It would probably something good to add to my rotation, but it is sooooo expensive.
I would scare too many people posting pics of my cuff. It was frightening looking in October. I am praying it looks better when I get my pics back from Cleveland. Even on constant Canasa there is still inflammation.
I think it is easier to talk about what the scope pics looks like if you post them and let them speak for themselves. That way everyone can see exactly what is under discussion. Although my pics which I posted above do not look so great I feel better than what you would think. To me the comparison is a bad case of acne on a kid's face. It does not look too good but it really does not hurt. My pouch is like the 17 year old kid with bad acne. Although my pouch is actually 20 years old.
CT, those are some crazy pics, wow! Hope u r feeling OK and can get whatever is going on under that pouchitis? Thanks for sharing. I got my biopsies back and all looks good...just mild pouchitis.
My scopes usually show some form of inflammation, but nothing compared to my first scope. I am able to feel great as long as I stay on my antibiotic. It's once I try to go off (like now) that everything begins to go downhill.

BTW, my colonoscopies didn't always match to how I was feeling. Don't really know why that would be.
CT, those are some crazy pics, wow! Hope u r feeling OK and can get whatever is going on under that pouchitis?

I think those pics do not really show that things for me symptom wise ARE under control and have been under control. I was a little shaky in June before those pics were taken, but I feel essentially the same as I have the last 17 years. My pouch pics have never looked that great - they have shown inflammation/pouchitis. Those pics were a little worse than the pics taken in July 2010 which was my prior study.

As long as I am on antibiotics I am OK. If I go off there is a severe deterioation within 7-10 days, now that I am also taking Entocort. Before starting Entocort in June I would deteriorate in 4-5 days.

Right now I am on vacation in Key West, Florida, checking in. This place is so vibrant and full of life. I am taking xifaxin this week so I have consumed quite a bit of alcohol the last few days. I had a really bad butt burn after drinking white zinfandel during Happy Hour last night. But I had no such issues drinking much more powerful liquor today, including a "Pain Killer" which had rum and banana liquer in it, and then riesling with dinner tonight. Hopefully the liquor is good for the pouchitis too, but not so sure about that. It does slow things down in my case.

Anyway I am doing fine and enjoying myself very fully down here in the Conch Republic. It's been a great trip so far!!!!!!!
Last edited by CTBarrister
I'm jealous. I wish I were there again. How is the weather?? Glad to hear you are enjoying yourself. I always seem to feel better when I am away from the house and have other things to focus on other than my pouch problems.
How is the weather??

Sunny and 77 degrees fahrenheit today going to a low of 69 tonight.

I went to the Ernest Hemnigway House and the Harry Truman White House today. Amazing tours. I also went on the Conch Tour Train which was also a good tour although our guide talked too fast.

Key West is VERY pouch friendly. Bathrooms everywhere and all the merchants are cool about using them. Duval Street has so many bars and restaurants and clubs you can't walk more than 30 feet and be very far from a bathroom.
That's funny...19 years ago when I had UC, I was never concerned about needing to find a bathroom unless, of course, I had an acute flare up before meds tamed it. Now I seem to be much more aware of bathroom situations and really gross ones just make me sick.

I wonder if Kelly Magillis's restaurant is still there. I loved the tours also and the end of the pier and yes..the endless bars and party atmosphere!!! We actually did a sunset booze ride/snack ride on a nice sailboat that was a lot of fun too.
First line of threatment is antibiotics: cipro, flagyl, augmentin and xifaxin as well as others. In my case it is the only treatment that has worked and obviously from my pics, it has only kept the pouchitis "simmering" all these years. If I am off antibiotics one week the simmer goes to a boil at light speed.
Now I seem to be much more aware of bathroom situations and really gross ones just make me sick.

I have no urgency whatsoever as long as the pouchitis is under control. It's just that we are constantly eating and drinking and we Pouchers have food go through us quicker in the normal course anyway.

The Conch Tour Train that goes all through Key West is about 1.5 hours but they have a couple of stops along the tour at which there are men's and women's restrooms. I think they get that people are eating and drinking a lot, and even coloned people need to relieve themselves. But it's really comfortable and enjoyable for a poucher as well. They just tell you that until they get to a designated stop, they are not stopping, whether you have to go to the bathroom, or drop your digital camera or your baseball cap blows off your head. It's basically "tough shooshkums" if this happens.

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