HI I AM NEW TO SITE SO EXCUSE IF I MISPOSTED ABOUT THIS ANYWHERE ELSE..

I AM ONE YEAR AFTER J-POUCH..IT HAS NOT BEEN SMOOTH SAILING ALL ALONG BUT IT APPEARS I DO HAVE CONTINUAL PROBLEM ON AND OFF IN A DAY OR FOR MANY DAYS OF FEELING OF IRRITATION/SORENESS/MAYBE BURNING WHEN I GO AND SOMETIMES THIS FEELING OF NOT EMPTYING AND JUST SITTING AND SITTING TO PUSH OUT SOME B.M..A WHILE BACK SURGEON SAID I HAD CUFFITIS BUT THEN I COMPLAINED MOSTLY ABOUT SEEING SOME BLOOD REGULARLY ON TISSUE..HE GAVE ME TWO WEEKS OF CANASA..HELPED THE BLEEDING I BELIEVE BUT ON GOING IS THE IRRITATION/BURNING THING..SO I THEN TOOK TWO WEEKS OF CIPRO..BEST TWO WEEKS I HAD IN A YEAR..BUT THAT WAS JUST FOR TWO WEEKS..

NOW,I CONTINUE TO HAVE IRRITATION/SORENESS OR BURNING AND YESTERDAY HAD THAT NOT EMPTYING FEELING..WHEN I WENT TO SURGEON AGAIN HE DID NO EXAM AND SAID I MIGHT NEED TO EXPERIMENT WITH CANASA AND CIPRO...HE DID NOT THINK IT NESECCARY TO EXAMINE AND ACTUALLY SAID IT REALLY WAS UNNECESSARY BECAUSE EVERYONE WILL HAVE SOME INFLAMATION IN THE POUCH AND THE CUFF BUT SOME HAVE NO SYMTOMS...HE DID NOT SUGGEST I HAVE OPERATION TO REMOVE THE LINING OF CUFF AT THIS TIME AND WORK WITH MEDS ALTHOUGH HE PREFERRED YOU NOT HAVE TO BE ON MEDS..WELL HELLO ME TOO!!!!!!

I CAME HOME THINKING I WAS KIND OF ON MY OWN HERE WITH HOW TO FIGURE IT OUT...

I AM FEARFUL OF THE NEED FOR ANTIBIOTICS ON GOING ALTHOUGH SOME OF YOU ARE ON THEM LONG TERM WITH NO SIDE EFEECTS..BUT YOU ALL TALK ABOUT BEING ON VARIOUS ONES AT THE SAME TIME..IS THAT CORRECT???

SOME FOLKS EVEN HAVE SAID THAT THEY USE CANASA AND ANTIBIOTICS FOR THEIR CUFFITIS..CAN THAT WORK???

IS EXIFAXIN INSTEAD OF ANTIBIOTICS FOR POUCHITIS OR CUFFITIS???

HOW DO I BEGIN HERE??? I STILL TAKE LOMITOL BUT I HEAR FOLKS TALK ABOUT TINTUR OF OPIUM..WHAT IS THAT???IS IT IN PLACE OF LOMITOL WHICH I THINK UNLESS I TAKE LOTS OF THEM AT A TIME DO NOT WORK???

THANKS IN ADVANCE FOR SOME CLUES HERE...

Hi Rebecca, Sounds to me like you've experienced both cuffitits and pouchitis, especially since the canasa helped you. The "not empty" symptom is more of a pouchitis indicator. As for the burning sensations, that happens to most of us. I have had good luck making dietary changes, taking a probiotic, and of course, time. I think if you have on-going pouch/cuffitis that can exacerbate the burning.
One thing you mention is lomotil. How many are you taking? I suggest cutting back to see if you empty easier.
If you don't already, I suggest taking a probiotic. You might want to do another round of cipro to get your symptoms under control. I think if you start taking the probiotics, you can establish good flora, in hopes of the cipro not being long-term. You do have to "experiment" a bit to see what works. Xifaxin is another antibiotic they use to treat pouchitis.
Good luck

Hi Rebecca,

The tincture of opium you asked about is branded as 'Paregoric' and is basically a compounded elixir containing a very small amount of opium (in nasty tasting liquid - mine reminds me of Sambuca!) All narcotics have a constipating effect as they slow down GI motility. This is sometimes taken instead of lomotil or immodium or, depending om how bad you are, in addition to it.

My husband has cuffitis and takes cortisone suppositories instead of the Canasa - they have always worked better for him personally. Regardless though, he has found he has to use them all the time and if he misses a day or two he has problems. Since Canasa have fewer side effects than cortisone, it may be worth discussing more of a maintenence of these with your doctor if you feel your symptoms return quickly (you just said you had problems on and off so it is hard to tell how frequently you are experiencing this).

What Sheby said re: the pouchitis is a great suggestion - perhaps do another course of Cipro to get it in remission and then get right on a good probiotic like VSL to see if you can keep it in remission. Hopefullly you can do a short course of Cipro and won't experience any side effects which tend to occur more with the long-term use (e.g. the tendonitis). Best of luck to you!