Hey, first post.

So I’ve been struggling with, as it turns out, pouchitis since around February or so. At first it was treated as an anal fissure of sorts (since the pain centred around that area), but that didn’t have any effect at all. So finally I was put on antibiotics earlier this month (the stuff that is marketed as Flagyl in the US from what I’ve been able to look up). By the time this treatment started my pouchitis had gotten pretty bad.
Having a BM was very painful, sometimes my pelvic region would somehow ‘seize up’ (cramps?) and I would be unable to urinate very much if at all, and overall I was pretty miserable and fatigued.
The antibiotics cleared things up completely though, in a matter of 5 days. I was on it for 10 days and obviously followed through with it.

After about a week or so it’s coming back now. Not like a freight train, just slowly making its presence known over the past few days, progressively getting worse.
Been put on a 2 week treatment this time (haven’t actually started it yet, my doctor’s computer broke down and he mailed the prescription to me instead, which means I’m expecting it sometime between Saturday and next Halloween).

So... My questions are, has anyone ever had trouble emptying their bladder while dealing with pouchitis? I’ve looked around a bit and haven’t found anything of the sort here. The antibiotics solved the problem last time, but I can’t help but wonder if something else is going on.
On the other hand from what I understand the bladder and the pouch are pretty much neighbours, so maybe an infection in one of them will just generally cause indirect problems with the other? Everything worked fine after my takedown in August, until I ran into this.

Secondly, for those of you who’ve had pouchitis and beat it back with these antibiotics (permanently or at least in remission for a good while), how long were you on them for it to work properly?
Finally, since these things seem to be somewhat individual and I noticed people ask from time to time on boards like this, these are my experiences with pouchitis and Flagyl so far...
Pouchitis:
Increased frequency, very painful BMs, cramps and derived discomfort/light pain sometimes ‘travelling’ as far as the genitalia, trouble urinating. Fatigue. Reduced appetite but no nausea. Epic buttburn.
Flagyl: A little fatigue that wore off the day after I went off them. Expected a lot worse actually.

Apologies if I got any of the terms wrong... All I got is a dictionary and Wikipedia (poor man’s medical encyclopaedia).

I've never had any bladder issues. I have had pouchitis since January 2008 with only brief times off antibiotics. I have all the pouch symptoms you mentioned. This week I have been on a week without antibiotics but after 5 days I started having symptoms so am back on antibiotics. My routine now is one week on Xifaxin, one week off, one week on doxycycline, one week off. I take culturelle everyday. We are trying to keep the pouchitis under control with the minimum amount of time on antibiotics. I am allergic to Flagyl. Sorry I can't be a bigger help. Use the FIND function to look at posts that might address your issues.
I wish you better health.

Nice to know there are other options out there at least. Went to my regular (non-GI) doctor today and had some tests done. No sign of infection or nasty bugs in the bladder or associates it seems. I was told this could be a side-effect of all the surgeries that just happens to only manifest itself when I've got pouchitis going too.. Sigh, good times. At least Flagyl seems to have started working now.. Hoping for the best.

Sorry, no suggestions/experience with the bladder issue.

You might want to check out the post I started called "Rotating Antibiotics - A List. . . What's Your Cocktail?" for ideas about antibiotics to use. I compiled a list of antibiotics that I'd read people had used successfully for pouchitis. When I get more feedback on that string of posts, I'll try to organize by drug family (sulfa, penicillin, etc.). My doctors have always started with Flagyl, then Cipro, and I think those are the typical first two. I'm currently taking Xifaxan 200 mg 3x/day, which is doing ok with keeping things manageable, but doesn't seem to work as well as Cipro and definitely took longer to kick in. I chose it because the long-term side effects seem much less with Xifaxan than the others. Every month I need to go through a hassle with the pharmacy because Xifaxan is expensive and designed to be used in a short course for traveler's diarrhea. So, depending on your insurance, you might need to push to get approval to try this one.

Good luck and keep persevering. It can be really frustrating that it's so individual and you need to do trial-and-error. I hope you find something that relieves your pouchitis soon.

Lynne

Last treatment ended Saturday.. Been feeling alright, but not really convinced that it's actually gone. I guess we'll see. I've started on some probiotics, no idea if it's of any use yet.
Took a week on Flagyl to get rid of the symptoms this time around, then of course another week following through.

Might as well update this for my own sake, since I can't remember a damn thing lately anyway. Been on Flagyl 3 times now with 7-10 day intervals. It just keeps coming back, so this time I'm starting on Cipro (just as you said Lynne). Only taken one so far so can't really say anything about it.

The application process for help with school I wrote about in that other thread didn't go through. They did not see how being sick with pouchitis and missing classes etc. would affect my performance. Filed a complaint with a note from another doctor describing in detail how miserable this can be and how it affects my mental health too. Probably on to something there, but if I am losing my mind I think it's at least not the part that does school work. Just all the other stuff.

Really need to get some sort of treatment schedule, instead of this... Whatever it is. I guess I wouldn't even mind the antibiotics that much if I had a regular rotation or similar (like some of you guys describe).

Just hoping Cipro kicks in fast now, getting pretty tired of painful BMs and the associated "phantom pains" (that's what my non-GI doc called them) that seem to be all over the place down there..

Hi Brows,

I've just rediscovered this website after a 5 year gap without any symptoms. My Pouch suffered from 3 bouts of pouchitis in the first two years or so then settled down and more or less behaved itself for the next 6 years. I, like you have had a slow build up of pouchitis that I did not recognise and yes, it was accompanied by a difficulty in urination to the point at which I thought my prostate was in trouble. I had pain, bloat and frequency, which all increased over the six months but I put it down to stress and a possible constriction at the old stoma site. Eventually, I was referred back to the surgeons who arranged a CT scan and Pouchoscopy for me. The scope gives a great view of the inside of the pouch and it was pretty obvious that it was unhappy. Inflamation and psudopolyps gave an official diagnosis of pouchitis. Been on Metronidazole 400mg (is that Flagyl?) for the last 13.6 days (only one left to take) and have seen a marked improvement although I don't think its completely gone yet. What is very interesting is that my urinary difficulty appears to have gone along with the pouchitis. My surgeon had suggested that occasionaly there can be a small cyst or something between the pouch and the bladder as they are very close together. This may have been the cause of the difficulty but apparently nothing showed on the CT scan so I'm still in the dark. Apparently he wants me on Ciprofloxy-whatsit for 3 weeks if this lot doesn't work so I'm keeping my fingers crossed. I am definitely interested in the baldder pouch connection though as its an absolute pain having to stand and whistle and put on the taps and it just gets worse until eventually I have to sit and empty the pouch before I can pee again.

I'll be watching this space and if I get any more infor from the surgeon in afew weeks, when I see him again, I'll be sure to update.

Somehow that completely slipped my mind, I'm having a pouchoscopy done soon. Haven't had one since just before my takedown.
And yeah Metronidazole is Flagyl, the latter being some sort of U.S. brand name I suspect.

quote:

Metronidazole 400mg (is that Flagyl?)

Yes, Metronidazole is what flagyl is in its generic form in the USA. That is what it says on my pill bottle as well. Only difference is my tablets are 500 mg.

I was diagnosed with bladder polyps suddenly last February. i have chronic pouchitis and take xifaxin, entocort, rowasa enemas for that. Because I had a multibug infection,they were worried about a fistula which they said a bladder/pouch fistula is RARE in women but can happen in men. New diagnosis is hemorraghic ureteritis. Turns out that this is NOT related to anything pouch wise as far as anyone can tell( I had cystoscopy, gastrograffin study, pouch scopy with biopsies...) Bladder issues from what they told me can be related to a fistula.

Update: Ended cipro roughly two weeks ago and things have been somewhat stable after that, apart from a lingering pain just near the opening on the left side, sometimes producing a burning sensation when having a BM.

Had the scope done today and as it turns out my pouch currently looks mostly fine, apart from a fissure on the left side (that was healing too fast as the doctor put it, at least until he accidently opened it again).

I also have some inflammation in a very narrow band near the bottom of the pouch (cuffitis?), which is probably UC related and the cause of the fissure too.

Was prescribed some sort of prednisone cream/lotion to apply for a couple of weeks. Apparently it also contains some form of antibiotics as well as lidocaine (I think it was, yet to go pick it up). Bit of everything then.

Hi!Everytime I get pouchitis I have trouble emptying my bladder also. I think its due to the inflammation and swollenness of the pouch. I currently have another episdoe right now. I am urinating okay, just keep feeling a bit constipated. I feel like I have to go but than nothing really come out. Ever have that?

Hi Amara,
This is a constant problem for me. Any time there is irritation in the pouch I have an associated difficulty in urination. According to my surgeon this could have been due to an abscess or some other scaring between pouch and bladder but this has been ruled out by CT scan. It seems that when I empty the pouch, it automatically gives me the need to pee. I have to then pee in the standing position because the nladder won't fully empty in the sitting position. When the pouch is inflamed or irritated, this ability to get started in either position becomes accentuated to the point where it can become impossible. There is also a link between the emptying of the bladder and what happens afterwards - within 5 minutes or so of emptying bladder, I have to go back and finish emptying the pouch that I thought was already empty! Hows that for fun?

I have enjoyed your post, as I have the same symptoms. Urination is hard at times, when I have pouchitis. I am taking Flagyl now, but the Dr. won't let me stay on it for anything over 10 days. Afterwards, I start to get it again. I have taken so many meds for two years without much relief. I wish you well and I will keep reading aqll the posts.

So.

Had a follow-up scope a few days ago. Still no sign of pouchitis, and what's more, no visible signs of fissures or inflammation of the cuff either. In fact the doctor was a little surprised by the results. Still bothered slightly when having a BM sometimes. Apparently there might still be fissures or minor damage so small it's not visible though.

Also this time the scope was one designed in size for children, and I've been told to always make sure this is the case for future scopes. I don't know what the regular routine is for j-pouch scopes, but my doctor wasn't bothered by it and it caused me less 'bother' as well.

Not really sure this even belongs in the pouchitis forum anymore. Basically cipro happened to clear up pouchitis, and prednisone locally applied helped with the apparent cuffitis. Content for now.