There are others way more knowledgeable than I am!  But, my only question is, are you taking psyllium too often/much?  When I take it it increases BMs noticably.  Are you taking Immodium? (I take 2 before each meal and 2 a few hours before bed.)

I take 3.5g at breakfast & again at dinner, if I don't stools are quite loose & watery. I used to take Immodium but find after a few days it bungs me up, tried it with Psyllium & without with same outcome. Common thing is 8-10 BMs whatever way.

I'm wondering the same... My crp levels are 1.0 minimum, I have mild pouchitis, but there is a STRONG difference when I take ciproxin and don't take. Have to say that my only scope presented microulcers (healing) and moderate pouchitis. My BM frequency was 5-8 when I have pouchitis, and 2-4 on ciproxin. Can't understand why myself. It seems this is chronic pouchitis but it seems difficult to handle without antibiotics, but I hope to find a way to.

If you have pouchitis symptoms without the inflammation of the pouch that is necessary for a pouchitis diagnosis, then you are left with either SIBO or IPS. The bacterial overgrowth responds to antibiotics, same as pouchitis. IPS does not and is best treated with antispasmodics and low dose antidepressants. 

For all causes of pouchitis symptoms, reducing carbs can help, as bacteria feed upon undigested carbs, with gas as a byproduct.

For me, my frequency and stool consistency is less of an issue than my discomfort. I am not botherd by loose stools up to 8-10 a day. But, the excess gas and urgency is what really makes me miserable. Flagyl used to work great, but not so much anymore (and I only took it intermittently). Cipro works well for me, but I am loathe to stay on it continuously, so I just recently started xifaxan and will rotate as needed. Unfortunately, with my health plan xifaxan is restricted, meaning I cannot get it mail order and can only get a 30 day supply in one prescription. So, it is a pain to have to pick it up, but since I already have to do that for my Cimzia and Norco, I am used to standing in line at the pharmacy.

Jan

Jan, just a thought...next time you visit your GI, see if he can bump you a few bottles of Xifaxan.  Whenever I go in, he gives me whatever supply he has on hand since he knows how expensive it is.  I left with 2 bags worth last time :-)

I have Kaiser. The docs don't get samples (no lobbying from pharmacy reps). I only have to pay a brand name copay when I pick it up, so it is not expensive for me. But, since a 30 day supply has a retail cost of over $1800, they will not fill the usual 100 day supply that is the maximum for other drugs. I am mostly annoyed that I have to pick it up in person. 

Jan

Jan, when you say reduce carbs, apart from the obvious does it extend to rice, potatoes & pasta? Xifaxan gave me insomnia & muscle aches & here in Spain I can only get 4 days supply at a time!!!! What do think of 4 day course of Cipro?

Ikh, do you complete a 10 or 14 day (or less) course of Cipro? My CPR is under 1 too.

Paul

"Reduce carbs" really does apply to all carbs, even the sugar in fruit. It's possible that some carbs are better than others, which is what FODMAPs is getting at, but for our unusual situation with a J-pouch there's no particular basis for distinguishing among the carbs. One way to get around this inadequate information is to carefully do the experiment on yourself. Reduce the heck out of all carbs (sugars and starches) for at least a couple of weeks, and see if it helps. If it doesn't help then the experiment is over, and you can at least enjoy your food if not your toilet visits. If it helps, you can slowly add back selected carbs (e.g. fruit, or low FODMAPs, or rice, or whatever) and see which ones you seem to tolerate best. These effects don't happen overnight, so if you go quickly you'll just get confused. This is essentially an elimination diet for carbs.

Unfortunately it seems like only a minority will get benefit from very low carbs, but it's a great tool to have if it works for you.

A 4-day course of Xifaxan is probably being written for the wrong (lower) strength, and the insurance company is assuming it's for Traveler's diarrhea. The higher strength pill is approved for hepaic encephalopathy, which is a very long-term treatment. Not even an insurance company is foolish enough to restrict that to a four-day course. Using it for pouchitis is off-label, though, which is medically quite appropriate.

Scott has summarized it well. Not much to add. 

To treat pouchitis you need 7-14 days treatment. 4 days must be for traveler's diarrhea. If you have chronic issues, pulsing with 4 day courses may work, but you'd be dosing at more frequent intervals. For my chronic symptoms I am currently rotating Cipro, xifaxan, and Flagyl. I try to go without antibiotics as long as possible. Lately, that has been about a week. 

As for the diet, yes, I was referring to all carbs. You can try specific carb restrictions, but it really is more efficient to restrict all until symptoms abate. Then add back one food at a time to identify specific bad actors. The reasoning is that there is no universally useful diet.

Jan

Jan,

Are you saying its not normal to have the excessive gas, 8 to 10 stools a day and a the urgency?  Should I go to the doctor?

Excessive gas and urgency are not normal. The cause should be found and dealt with. 8-10 bathroom visit a day might be normal for some, but it just doesn't matter if the urgency is gone.

Keep in mind that cipro will cause a bowel slowing affect even in the absence of pouchitis. It tends to be constipating in general, so the "improvement" you are experiencing when you take it may just be a normal side effect of the cipro without actually treating any particular problem.

I don't have much else to add. As others have said, 8-10 BMs daily certainly isn't out of the norm for a j-pouch, but urgency is. You could try halfing the dose of imodium or even just taking half a pill at a time. The tablets easily break at the natural center divide.  And there is always Pepto Bismol if you haven't tried it, which itself has mild antibiotic properties. There are some reports of rare complications with long term use, but many pouchers take it daily without issue. You may also want to cut out the psyllium just for a few days to see if there is any difference.  In my case, psyllium caused increased gas so it's something to consider. Otherwise, as Jan has already stated, this seems like SIBO or IPS. Pouchitis should be detectable on scope. I hope you can get it sorted!

Thanks so much, I find the info on this forum invaluable, I think I'm probably more knowledgeable than my IBD clinic in Barcelona thanks to you guys.

Interestingly since my scope & enema prep I've gone 2 days on 6 BMs a day, maybe the enema has cleared out the bad bacteria. I'll give the Pepto a try, thanks for the advice, I wasn't aware of it.

Paul

Yeah, sometimes a good cleanout sets things straight, at least for a while. If the extreme gas and urgency returns, you should talk to your doctor.

Jan

I follow what a lot of others do here also. I pulse Cipro as needed. I can go several weeks without it, but when my symptoms return, which are related to my chronic stricture, a few days of cipro helps set me straight for while and does seriously slow down my trips. I do not get this relief with anything else I have tried like immodium or lomotil as immodium just binds me and makes passing stool so much harder with a stricture and lomotil dries my nose out to where it is very uncomfortable.

It does seem a bit unusual after all these years to be experiencing your symptoms, but cuffitis and pouchitis can crop up at any time with a jpouch.