hi..thanks for your imput higby,shelby,muggette.. the question i have is if i take cipro and it seems to do the trick that is rid me of whatever symtoms i have does that then rule out cuffitis or can cipro help cuffitis too..i know jan and others have said antibiotics= pouchitis..canasa=cuffitis..but wondering if there can be an overlapping..

i am going to try to see how i go with cipro but lasted five more days after finishing cipro last time..sonot sure what to take now..when i figure that out i am going to try the probiotic approach vsl...i have been taking culturelle for qiute a few months but that isn1t doing it..so i will try the heavy hitter however i know i will not be able to start on recommended doage because i am very sensitive and once just tried one capsule ..i believe two capsules equal a packette..so i will have to start slowly..i have canasa on order but do not know if i should do that one at this time...higby recommendadtion of xifaxin is somethig i will attempt next..but what is dan active probiotic drink????where do you get it???
thanks in advance for any replies..god this is all so confusing..i feel like i am reliving my u.c days all over again..three years of trying everything,up and down mentally..i hoped the operation was going to end all that..but so far not so..sign..rebecca

Canasa won't do much of anything for pouchitis to my knowledge, but the cipro CAN help the cuffitis. Combined w/ the canasa, and I'm sure that it would be a more aggressive approach.
If you start the VSL do a pack or capsule every other day or so, see how you do and work your way up. I tolerate Culturelle well but I've tried others that are too potent for me.
Dan Activ is another yogurt that you can buy at most grocery stores. I prefer the probiotics over yogurt because most of the yogurts have a lot of sugar.
Don't worry too much, just a bump in the road. I hope you're feeling better soon

When I was on Flagyl, it took care of my cuffitis symptoms. I had pouchitis on top of the cuffitis. But, when the symptoms rebounded after stopping the Flagyl, my GI decided it was time to reevaluate the little bit of rectal cuff inflammation we knew I had. I began the Canasa while still taking the Flagyl, overlapping by about 4-5 days, then I stopped the Flagyl and the Canasa took care of business.

If you have Canasa prescribed, I see no harm in giving it a try. It's probably more cost effective than VSL.

The literature I have read shows that 5-ASA medications such as Canasa, Azulfidine, and Asacol only had moderate success with pouchitis, but it is effective for some people.

Jan

jan and shelby just the two folks i wanted to hear from!!

jan can you be a little more specific in that you said you had the antibiotic and thenoverlapping by 4 or 5 days..exactly what do you mean by that???after taking antibiotic 5 days ,you then started the canasa?
then you said after you stopped antibiotic you then had another 4 or 5 days of canasa???
i definitely want to give whatever you did a try because i know you have issues with cuffits and you have it under control..
shelby`s suggestion to take both like you said because i know i have in the past been diagnosed with cuffitis(just a few months ago) but he never said if i had pouchitis and do not know if i do know..
how many days would you say you took antibiotic in total and how many for the canasa??

then did you just wait and see or continue with the canasa for maintanance??is that all you use now??
i would love to figure it out and just have something to maintain me and hoping that infact i do not have pouchitis on regular basis to avoid being on antibiotics long term..i see no problem with staying on canasa..i do not believe it has any long term side effects..
i think i remember jan saying she also takes azufidine come to think of it,so i gather canasa does not keep you in remission and you need azulfidine jan and that falls i believe into the category of asacol and colazol..the suppositories are a step down from those as i recall from my u.c days where none of those things worked very long for me when i had proctitis..i used colazol because i had reactions from the azulfidine which i think the best of the 3 but i think it has sulher and i may have problems with that..anyway would love yo get a better understanding of how you would recommend proceeding jan since i may have same problems as you..my doctor pretty much gave me the freedom to try things with perscriptions to bothcipro and canasa..ofcourse it would have been nice to have more direction but onthe other hand he is just guessing so i might as well get itfrom those that have been there...

to tell you the truth i was shocked when i learned about cuffitis and that a portion of the diseased cuff was left in tack..it might have been mentioned to me before operation but i might have missed it because my gi at the time said ..well at least you will be done with colitus..i think it only a small number of folks have trouble with it ..maybe 13 percent..if i registered that info i might have asked for the whole thing removed based on my previous luck with colitus..always fell into the small percentages!!!

sorry to go on rambbling ..i am so thrilled to finally get on this site..i have followed it for almost a year and feel like i already know jan and shelby..you guys are great..rebecca bender

woops need more info from jan..sorry..jan how did you ever know you had pouchitis at the same time you had cuffitis???did doc. confirm this??also when you have any symptoms or when you had them how do you know it is pouchitis vs. cuffitis or both?/and what do you take in those instances??
do you believe the cuffitis is forever or did your doc ever indicate it could burn itself out???something i heard my surgeon say could happen...

is it worth getting another doctor besides my surgeon who is very hard to see when you have a problem..i can call but no looky see type thing..my surgeon does not believe in looking he feels if you have symtoms he perscribes cipro if it works its pouchitis..only because i was do for a checkup of one year did he acknowledge i had mild cuffitis ..he looked..i told him i had some blood)and at that time gave me canasa to take two weeks..

thanks again for answering my e-mails..rebecca

Rebecca, Sorry if I wasn't clear.

I had known for some time that I had some cuffitis before it was treated (seen on scope). My doc told me that we would treat it only if I became significantly symptomatic. I had occasional bleeding, but was doing OK, or so I thought. Usually you can treat based on symptoms, unless the treatment is not effective. Then you need to know what you are dealing with. I go to my GI, not the surgeon.

Then I came down with a roaring case of pouchitis- full blown diarrhea, cramps, incomplete emptying sensation, tailbone pain, low grade fever, fatigue. My doc diagnosed it by symptoms alone and placed me on Flagyl for a week, which worked within hours of the first dose. However, the symptoms gradually returned after stopping it, but not as severe. I went back on it for another week with the same result. At this point it was decided that the underlying problem was the cuffitis and it should be treated. I stayed on the Flagyl and started the Canasa. After 4-5 days I stopped the Flagyl and continued the Canasa alone. I was told that after a few weeks to just titrate the frequency to whatever maintained remission. After a few months I tired of using suppositories and asked to try Azulfidine, which worked well for me for many years before my colectomy. I have been on the Azulfidine for maintenance of my cuffitis since then, and it has been about 8 years now. I keep the Canasa around for when I have some rare bleeding. But, I haven't used it in about a year, since I began treatment for my enteropathic arthritis (Humira).

My feeling is that just like UC, cuffitis should be treated with maintenance therapy once you find it is chronic.

Jan

I have pouchitis/cuffitis that hasn't been cured for quite some time. I currently take four VSL #3 packets every day and Cipro (Flagyl made me sick, as I see it has others). I've not heard about some of the other drugs like Canasa and am making a list so the next time I go see the GI specialist he can look at it. They were going to take down the pouch last summer because of this chronic ulceration but the VSL was helping. They discussed starting Imuran again, and that made me very sick when I had colitis.

Then I got breast cancer and the chemo actually made the ulceration/inflammation better Now that has worn off and it's worse than ever. I was glad to hear someone else talk about tailbone pain. I tried explaining to my oncologist that I had pain inside me in my back that was not bone pain & she insisted on ordering a bone scan to see if I had cancer there, which I didn't. I told her it's the same pain I felt in the back when I had my colon and the ulcerative colitis.

What is anyone doing about the pain? The experimental drug I took for the cancer caused triggered migraines, so I already take Fioricet as needed. It's great for the migraines but doesn't touch the pouch pain, and of course I can't take nsaids like aspirin, ibuprofen, and one I can't think of (ha-chemo brain). They also discontinued Ultram as it is now showing GI problems. Oxycodone works but I don't want to take it and get hooked, and my doctor doesn't like prescribing it. Thanks!

Ok, bear with me on this but I don't really understand why you are all getting so many cases of pouchitis/cufftitis????
When still living stateside I remember having it more often then since I moved here (France). Now I cannot remember actually having had a case in close to 15 or 20 years.
I think that the change coinsided with my change in diet etc...I have been a "fit for lifer" since around 1993 or so and now that I have read most of your posting I realize that it must make a differece.
Other than mechanical difficulties with the valve, I have had no problem since I started drinking water/prune juice/cofffee/ in the morning on an empty stomach and eating nothing but fresh fruit until around noon.
This allows the pouch to naturally clean it self out every day and I think that it has contributed greatly to good pouch maintenance. I also do an occasional probiotic treatment with either commerical or pharmacutical grade products that help me to regain the healthy balace of flora in my digestive track.
When I am "really good" I sperate my my protien meals and my carb ones. It works for me. It also allows me to eat a larger variety of foods and have better digestion and fewer problems with output.
I was a non believer until someone suggested it. 15 years have proven them right!!!
If you are curious or need more info let me know. It is easier than living on a permanent diet of antibiotics!

Your diet is interesting. If I eat any fiber, especially fruits & vegetables & bran (or chocolate or milk), my pouch is instantly crampy & painful, and then when I eliminate I have bleeding. My doctor told me to stay away from fiber since it literally tears up the inside of my pouch (confirmed with a scope where he could see the ulcerations throughout the pouch). Prune juice makes me gassy, as do the above foods. It just goes to show how different we all are. I'm glad that diet works for you. I tried over-the-counter probiotics, which are a much lower strength than VSL and had no improvement. Four packets of VSL daily and Cipro is what has saved my pouch from being taken down. I think our bodies and disease/ulcerations are all so different that it's trial and error