Can you have pouchitis but no real urgency and not alot of frequency?

Well, yes and no. Frequency and urgency are sort of hallmarks of pouchitis. That said, the degree of inflammation may have little correllation with symptoms. Some people have severe symptoms with little to no inflammation. Others have mild inflammation with severe symptoms. 

Are you taking any bowel slowers? If so, it is probably a good idea to back off of them. I find that when I am on antibiotics, I do not tolerate Imodium, even though I was fine with it for years. Like you, I feel almost obstructed and gas builds up.

Jan

That's the odd part Jan. I take metamucil everyday and if I skip a day then I get backed up more then I am now and it's always an immediate notice. I've tried citrucil with no luck as well as fibercon pills with nothing changing

Perhaps a partial obstruction then? Less fiber and more juices to try to get things moving.

I just noticed my reply before was a bit nonsensical, so I fixed it. Guess it was too late at night for me...

Jan

No worries Jan, i didnt respond back right away, i just got back from a business trip. I've been emailing my surgeon's aid and we have a scope planned for next thursday, 

If it is a partial obstruction is it possible to have it going for as long as say... a month and a half? 

forgot to mention the scope thats planned, the aid things a stricture may have come back.

Yes, partial obstructions can be persistent. Strictures can and often do recur. That definitely would give you obstructive symptoms. The scope will sort this out.

Jan

Hi,

I don't wish to hijack the thread, but Jan's earlier comments seem to answer part of what I need to ask and didn't want to clutter the board with yet another pouchitis thread.

I am about 18 months plus post take-down. Until recently: have metamucil morning and night. Don't eat much during the day and, especially if I'm active rather than siting at a desk, don't have a BM until lunchtime/mid afternoon. After eating evening meal several BMs and 2 or so during the evening, little or no butt burn. When I do have a BM it feels like the J-Pouch is being emptied, ie. there is some feeling of relief and I sense the vacating of the J-Pouch. All tolerable.

Recently however, more BMs in the morning (all day/night really), feeling bloated, much more wind, and much more acidic output (in fact very acidic), BMs more loose, hence much more butt burn. Are these the typical pouchitis symptoms and should I just front up to my GP and ask to be put on antibiotics (Flagyl?)? I think because I'm currently in another city helping my daughter move from a furnished two bedroom unit to a tiny, unfurnished, inner city one bedroom unit and trying to maintain a day job by remote control has significantly upped the stress levels. This may have provided the better than average conditions for pouchitis.

One other thing, there is significantly more urgency than previously. In the past it was (almost) like just wanting to go to the bathroom when I had a colon (not quite, but you get the picture). Now it is more the UC type urgency, ie. I better get to a bathroom or this could get messy.

FWIW I am eating bananas, marshmallows, yoghurt etc etc, but none of this seems to have any effect (other than to make me feel bloated).

Any advice appreciated.

my two cents, I agree dgtracy it sounds like a known or suspected stricture is playing a role. my strictures often lead to what I term incomplete evacuations. Ie I evacuate whats from the stricture down, then as that void is created, the stool refills and bam, I get to sit again. so much fun!

kevin, urgency and frequency as earlier stated are the hallmarks of pouchitis. so yeah maybe get yourself some flagyl and hopefully things calm down. the increased frequency might be creating the infamous butt burn and or maybe that's pouchitis too. I don't really think about the why I just smear on the A&D ointment for relief and carry on.

Kevin, I also think you're likely describing pouchitis. I favor Cipro, but mostly because Flagyl alone never worked for me.

DeveyJ,

I think that's a good attitude, the why is largely irrelevant, it's the what that causes the grief (and fixing it). And I think you are correct, the increase in frequency in concert with the relative looseness of the BMs adds to the butt burn.

Scott,

Thank you. I've just (last 20 minutes) seen GP who concurred and prescribed Flagyl and said if no result there then we'll try Cipro. I guess the annoying thing was the way the symptoms crept up on me, little by little until you have an aha moment ...this ain't right....

My first pouchitis crept up on me, too. I was sick for months as a result.

Scott,

       My first pouchitis crept up on me, too. I was sick for months as a result.

Yes, I can see how that would easily happen.

On a footnote: since starting the flagyl (3 per day for seven days), there has been an immediate (almost miraculous) result: Flatulence greatly reduced, BM much firmer, acid output seems less, bloating reduced (not entirely gone) and urgency significantly reduced. If anyone had said the antibiotics could have such am immediate effect after such an initial low dose I wouldn't have believed them.

Moral of the story, I guess: if you even suspect pouchitis get onto antibiotics ASAP. Worst case you have spent a few bucks on unnecessary medicine. Best case you have spared yourself a whole load of grief.

Kevin, as others have said, that does sound like pouchitis to me, and definitely good that you got things sort it out.  Actually, pouchitis symptoms can sometimes be vague, especially if they are simmering for a while, or in the early stages. I first had pouchitis about 11 months post takedown.  I did not have increased frequency or urgency per se, but over about a month I did have a change in the consistency of the BMs, vague lower back/tailbone area aching, increased gas, and then a feeling that the pouch wasn't fully emptying, though that wasn't until later. I was always understood based on what my GI had told me, that pouchitis was "increased frequency and urgency with very watery BMs and possible low grade fever," and since I didn't have any of those symptoms specifically, I didn't immediately recognize that I might have pouchitis.  It wasn't until things started to get worse and I googled the symptoms (and ended up here!) that I started to think I could have pouchitis. Sure enough,  that's what it was, and a course of cipro and flagyl cleared things up.

As you said: moral of the story - if you suspect pouchitis, best to get it treated ASAP rather than let it simmer and turn into something worse.

Spooky,

but over about a month I did have a change in the consistency of the BMs, vague lower back/tailbone area aching, increased gas, and then a feeling that the pouch wasn't fully emptying, though that wasn't until later.

Exactly, as both you and Scott have said, symptoms can be non-specific, not necessarily all of the symptoms, but some of them, and generally getting gradually worse over time. And because of the 'vagueness' very easy to miss especially if you are run down anyway.

Surprisingly, I can't get over how 'good' it is when the J-Pouch functions as expected, I must have been deteriorating for longer than I thought.

I don't get pouchitis very often (fortunately) but I do get Cuffitis and that seems to give similar symptoms as pouchitis for me. The treatment for that is different ie cortisone foam. It works very quickly for me but I have to take it for a while, otherwise if I stop too quickly it seems to flare really badly.

had the scope done yesterday, there was indeed a stricture. they dilated and today i just feel alot of pain and even more difficult to go currently, i believe it takes a couple days for pouch to simmer down?

not for my strictures but might be location of stricture?

my strictures are mid pouch and above pouch opening.

I have heard others who have had strictures in their colon for example experience pain from dilation. so to be candid I'm not sure what is normal.

I suspect but don't truly note any material difference in my ability to evacuate.

I must admit I haven't had much pain or difficulty evacuating post dilation but maybe it depends on location ? Mine is where the pouch joins the rectum . I would imagine it's possible for some swelling to be present for a while ? 

Because of the location I am able to use a dilator on mine regularly ( particularly important since I had radiation for cancer last year .)

I believe my stricture was further up where the pouch and small intestine meet. I think not 100% sure