hi have not been on site for awhile but many people are asking about concerns for chronic pouchitis.. thought i wold share my experience because it may help those trying to figure out what to do next....point is if you keep having pouchitis and if one antibiotic works but then stops working you try another and if that stops working probably there is a good chance you are as dr. shen would say..antibiotic dependent pouchitis..but..you also cannot stay on one antibiotic for too long..so you must rotate antibiotics..the good news is after a period of time on the rotating you can go back to one you thought would not work anymore..that is if you rotate say four antibiotics(different classes)and stay on each one anywhere from one month to two weeks and then go to the next.. i rotate 4 ..keflex,tindermax,levaquin,xifaxin..

been doing it for about three years..the only thing that seems to not be consistent is sometimes the antibiotic works longer,sometimes less so..when i first began to rotate they lasted longer each one..right now i am down to about two weeks before i have to change..

this may all sound awful but the reality us at least i am as are others antibiotic responsive..there are those that antibiotics do not help at all with pouch..so we are one step better than that..there are it appears just different levels to this condition..i am on tier three so to speak..not great but not the worst scenario..

stage one is someone who occassionally gets pouchitis and a round of antibiotics works and they are good to go

stage two is someone who gets it more chronically and needs to stay on a dosage of an antibiotic and that works for years..

stage three of chronic pouchitis is someone whose body starts to adjust to an antibiotic and can only go the route of alternating or rotating antibiotics..some can do one or another or in my case i need to rotate 4 to have my body accept the same ones after a time..

step 4 is someone who does not respond to antibiotics and then dr. shen tries some other tricks in his bag..

my own situation changes and someone told me who has rotating for 14 years now its like a pitcher in baseball you have to keep changing up..

at present my rotating of the four antibiotics after three years seems to have shorten between them and sometimes i need to switch from number one antibiotic to number three antibiotic because number two antibiotic does not work..but may work later..

is this a great way to live ..well considering my alternative the answer is yes..if i get to point i need some advise i will ask the other folks rotating..believe it or not those on this site know more than the individual drs..

together we figure out what has worked..dr. shen is my doc. and he is the best there is i think..i keep praying he finds another way to keep me going if the antibiotic rotating fails me in future..

i hope this helps some of you..its been pretty good for me ..given me a life again with the rotating of antibiotics..oh and i too take florestor(s.bulgarii) because some studies show it helps keep c-diff at bay..one of the fears of drs. who resist giving long term antibiotic use to patients..

and i actually have had some bouts of it ,one when i had colitus and one time after jpouch..both times successfully treated..dr. shen is very watchful of this with me and if ever i have any unusual symptoms i test for c-diff..

i use to be afraid of the thought of antibiotics and c-diff but experiencing them have shown them not to be the fright they seemed..

look i am not saying this is all great but when you are looking at constant pouchitis using antibiotics doesn`t seem so bad..again its a matter of alternatives..for me keeping my pouch is the goal..

hope this up date helps some of you get from a to b..

rebe

I would fall into step 4 given both my experience and pathology. I'm almost certain I'd rather go to an end ileostomy because I'm afraid of the long term affects of antibiotics. For example flagyl (potential carcinogenic), cipro (high risk for tendon damage and nueropathy), there are several others with major side effects if taken long term. I'm just telling myself I have to get over my vanity to lead a healthier life. Its not an easy decision and certainly understand anyone's willingness to stay on the drug train to keep the pouch.

I second that one ... I would prefer to take an all natural approach ... the vanity thing is an issue; however, I have two little ladies dependent upon me being healthy for a long time ... so, what can you do?! YIKES

There are old UC meds that you can try. I did very well on Pentassa for a few years. Also, up your Vit D level to above 60. My GI office is doing research showing that high Vit D levels=lower levels of inflamation. Mine is around 55 now ( Doc wants it higher-maybe to 70 )and that with the suppliments I take I have been pouchitis free for almost a year and a half now. Just make sure you have a doctor to monitor you. I use a GI and a Functional Medicine doctor. Oh, I went from a stage 2 to a stage 4 over the years but doing great now! The pouch almost came out last year.

This message has been edited. Last edited by: AllyKat,

AllyKat- what is it that got you off the UC drugs and your pouchitis into remission? What suppliments do you take, and did you have to make any changes to your diet? I'm still rotating antibiotics and my GI doc is already pushing UC drugs as a likely treatment for me. (something I'd love to avoid, if possible).

I am sort of between stage two and stage three. I could stay on cipro and flagyl for a long time and not rotate, but when I did it for more than a couple months in 2010, I ended up with a very bad yeast infection that took MONTHS to get rid of and was far worse than the antibiotic controlled pouchitis. Eventually, a combination of antifungal pills and rotating off onto xifaxin put the kabosh on the yeast infection.

The bottom line is that rotation may be a good thing even if you do not feel like you need to rotate. My current pouch specialist agrees with this philosophy. Other specialists will tell you "if it is working, stay with it." I have lived with chronic pouchitis long enough to have specialists who had both philosophies and I have lived through the trial and error of it. It is all trial and error on an individual basis.

I also have found that sometimes I am really strong when I rotate on to one antibiotic and the next rotation on to the same antibiotic 2 months later, I am not so strong. There is no real rhyme or reason to it but I make adjustments like taking Pepto Bismol chewables between dosages, increase my fiber intake and sometime modify my diet as needed. You have to try different things and see what the results are. This may wear on some mentally depending on the level of discomfort. In my case I always seem to be moderately to greatly controlled while on antibiotics, but I am big time dead meat within 4 days of going off. And it has been like this for 16 years now. So as long as I am taking some effective antibiotic - and there are about 7 or 8 that have worked for me, with cipro and flagyl in cocktail with pentasa and xifaxin with pentasa being the two best combos - I have some quality of life that ranges from good to excellent.

Just keep trying and don't give up!

What got me off the drugs was more drugs-lol-the remicade, only 2 doses put me into a remission via scope. I vowed never to go back on that ( I was antibiotic resistant and the pentassa stoped working ) See my post under "my pouchitis regime". It lists everything I take now. I do still take pentassa every night (I'm afraid to stop ) and on occasion cortifoam. I also changed my diet to more whole foods-veggies and fruits-organic-and only fish, chicken and meat also organic and grass fed. I cut out carbs and sugars but not completly-I love chocolate too much.

i think from these posts we can agree that this mystery of chronic pouchitis takes some constant changing up..after i posted my e-mail i had to throw in new antibiotic because my time inbetween my four was getting real short and i added some amoxicillian which worked ..actually been good almost a month now..but thinking of going back on regular rotation again and not stay too long on amoxicillan because i know from experience it will not go on for ever as i am one of thse in group three that require rotating..hopefully going back to my other rotation will work again..i will start with one i used the furthest out..hope by stopping amoxicillian before it stops working i can save it for down the road..

rebe

This is great. I'm just entering the world of chronic pouchitis and am at a lost as to where to go. So far cipro has been effective, but I don't know how long. I've been on it for 2 months.

I find it so helpful to read stories of those living productive lives while still being able to keep their pouches.

kar bear you could be one of those in stage one chronic pouchitis where staying on cipro just keeps working..its been heard of before..once knew of someone on it 4 years and going..but if not you then could switch to another antibiotic and rotate it before it stops working with some others..thats what seems to work next for many of us..but it is individual with some general guidelines..i stopped my amoxicillian today even as it continued working because i already know from experience antibiotics just stop working for me after a time..experimenting to see if i stop before it does become ineffective i can use it again as just fallback instead of rotating it..hoping my keflex which i have not used for three months works well for me for a while..wwould love to get a month from it..trial and error is the name of the game..

was glad to hear allycat was able to push on when her rotating stopped working holding on to pouch with remicade and now been doing well since..hope she continues to do well and keeps us informed

we are all our best sources for dealing with our ouchitis..

rebe

Pouchitis is such a bugger of a thing. It is so different for so many.

This site has been so great for me as I go through this and its difficulties. Reading how others are treating gives me ideas on how I can help cope (pepto bismal being one). Also just knowing that so many have been able to deal with it for many years. Without this site I would feel so hopeless and alone. Now I just know that it is something I can manage.