Problems with nightly incontinence

so the increased nightly incontinence especially from reading many others posts here might suggest pouchitis. my personal route with pouchitis had not until recently been correlated with nightly incontinence but I do believe it is now. pouchitis might also correlate with your recent bug, and aruguably a disruption to the bacterial balance which one might also find with pouchitis, as the most common treatment is with a course or two of antibiotics. for me its always been two 500mg pills of Flagyl or the generic version Metronidazole for a week or two, and usually I see almost an immediate response to my symptoms. good luck.  

First of all, thanks for your response!

The thing about pouchitis is that two and a half months ago I got my pouch checked and everything was fine and there was no sign of 'a real' pouchitis. I got my pouch checked as I had severe bleedings for two days but didn't feel bad at all. As the bleedings went as fast as they came (seriously, it was from one stool to another that there was only blood in it - after some stools there was no blood at all again) my doctor suggested it might have been a granulation polyp that splitted. Then I took Ciprofloxacin for one week, although it didn't seem to be necessary as my doctor only said that I might take it, just to go sure. I had these kind of bleedings for two stools one day before my infection I noticed above again.

So, what I want to say is that I got my pouch checked only two and a half months ago and took Ciprofloxacin back then. Furthermore there is no sign of blood in my stool (although I have to admit that I'm not sure whether this is a sign of pouchitis or not).

But okay, I might take Ciprofloxacin for a week again, my dad is a doctor anyway and I'll ask him first whether he might think it makes sense or not.

Any other suggestions?

Blood isn't usually a sign of Pouchitis. I agree with DEWEYJ that this sounds like Pouchitis. The fact that you didn't seem to have it 10 weeks ago doesn't mean much. Generally 10-14 days (rather than a week) of either Cipro or Flagyl does the trick (some people find that one works better than the other for them). In most cases the benefit is quick - within a couple of days or less.

yeah I hate the lingering aftertaste of Flagyl so I try to get away with only one week of 2x 500mg of it but the more usual course is 10 days to 2 weeks to insure beating the pouchitis. and pouchitis can come along after your scope of 10 weeks ago as Scott said. and also from what it seems blood is not necessarily an indication of pouchitis. in fact it might be more of the polyp issue your doctor described, but the nightly incontinence does seem to suggest pouchitis. read the many and varied pouchitis threads here, there is a whole section on pouchitis, and I think you will be persuaded.

Okay, thank you guys!

I'm going to take Ciprofloxacin for 10 days now (one in the morning, one in the evening) and hope it's getting better.

If so I have learned another lesson

Happy new year!

I sadly have to come back to you guys...

I'm done with 10 days of Ciprofloxacin and nevertheless had the same problem with nightly incontinence for two nights in a row  

While it has been better during the treatment I had problems during the last day of the treatment as well, so I can't say that it's only since I stopped taking Ciprofloxacin.

While this is not only bugging me psychologically it's also robbing my sleep as I have to clean everything instantly after noticing the disaster...

Are there any other suggestions concerning this problem?

curious what are you eating and what time is your last bite before bedtime? is your output generally loose? and if so have you ever used Metamucil or other soluble fiber product to firm up the stools?

i don't tolerate Cipro so don't take it. but Flagyl almost immediately squelches pouchitis for me, even my new breed of ischemic pouchitis. i would chat with your doctor. how long did you take Cipro for your first bought of pouchitis that you mention. candidly if i were you i would be chatting with your doc. i have a long term history of managing pouchitis and so my doc and i have an agreement about how i can self medicate but if it were to surprise me i would seek our her opinion to see if there were another/better way to manage.

good luck.

I'm eating 'normal', so I did not quit eating anything I've eaten before I got my pouch as there were no problems. Neither there was a problem with when I eat or so, in case you are wondering. But normally I eat about 4h before I go to bed and, of course, before going to bed I go to the toilette.

Before I took Ciprofloxacin my stool was quite loose, yes. But now it actually is like it's always been. I don't know how to exactly describe it but maybe it's a bit less loose than warm pudding.

I don't use anything to regulate my stool except for some Imodium here and there (not on a regular basis).

I have never tried Flagyl as my doctor only mentioned Ciprofloxacin until now. It got the job done anyway the first time and I guess the second time as well so there was no need to change anything. I've always taken it for 10 days, one in the morning, one in the evening.

I have absolutely no idea where this problem could come from... I didn't have to deal with these problems until my OP and now. 

Flagyl does work better than Cipro for some folks. DeweyJ's idea of trying soluble fiber (perhaps with dinner) is worth a shot. And I always take a Lomotil at bedtime. A few more things to try, anyway.

Well, the problem is that things can change. For us, it often does. I went nearly two decades with my j-pouch with just the occasional bout of pouchitis that quickly responded to Flagyl. Then they became more frequent and less responsive. Now it is chronic and I rotate Cipro, Flagyl and Xifaxin with only a few days between courses before the symptoms return.  

It sounds like you need to try a different antibiotic.

Jan

ah Jan, interesting as your timeline closely correlates to mine. 19 years of random, call it about once every 18 months of pouchitis, which started out bad but as I got better at recognizing it I was able to cut it off at the knees or would that be bowels, sooner by starting Flagyl. then about 10 years ago pouchitis every 3 months or so amended my dx, my meds. I tried that rotating abx for a year with little success plus I became allergic to Augmentin during that time, so on to biologics and then arguably evidence of amended dx by stricture manifestation, although no crohns tissue ever biopsied.

elsur I might have to take my own advice as presently my marathon training induced pouchitis that ive been subduing periodically with Flagyl seems to keep coming back. aggravatingly. ok, just convinced myself - emailing my doc now.  

Hmm, it seems like Lomotil is not available here, neither something else with Diphenoxylate which seems to be the active substance here.

Furthermore, Metamucil seems to be used in the first way for stool that is too loose? Why or better how is it helping us? I mean, we have the opposite of loose stool.

Concerning Flagyl: I've never tried it as I mentioned before. But I can't just take it now after taking Cipro, can I?

And it seems all of you are only thinking about Pouchitis in my case. Is there no other (frequent) solution for suddenly occuring nightly incontinence? 

you lost me? you have the opposite of loose stool? soluble fiber which Metamucil is largely comprised of works to act spongelike to absorb liquid thereby thickening stool output. for an experiment to watch it in action put a spoon full of Metamucil with a glass of water and watch what happens.

I suppose one could guess at muscular issues but given you hadn't had that initially post takedown I wouldn't think that is the issue. pouchitis may or may not be your issue but if symptoms respond to the medication treatment then we often conclude that is what it is.

Argh, dumb mistake. Sorry!

I meant that it's used in the first place for stool that is too hard (firm, thick - I don't know the correct word) as it's often named in context with constipation from what I've read. That's why I was confused. On their website it says that it also makes you feel less hungry. That would be a big problem as I already am a little too slim.

Metamucil is most commonly used for constipation, which does make it seem strange that we also use it to bulk up loose stools. Think of it this way: Metamucil makes anything more like the gel consistency of Metamucil+water+time. If someone is constipated, those bricks become more like a gel. If someone has liquid stool, the liquid becomes more like a gel. It helps either extreme get closer to the middle.

Yes, you can take Flagyl right after Cipro.

Pouchitis still seems to me like the best explanation for your symptoms. If Flagyl also fails then other explanations start to be more likely.

Since you can't get Lomotil, you could get good results with Imodium taken consistently at bedtime. If that doesn't do enough then stronger opiates may be needed at bedtime (e.g. Codeine or the hard-to-obtain Deodorized Tincture of Opium).

Another thing that helps some people with nocturnal leakage/incontinence is a *small* fatty "meal" at bedtime, such as a spoonful of peanut butter.

Good luck!

At one point I had to buy Depends for the nightly accidents.  Ugh.

For me, I found that when I changed my diet I had no accidents.  For me, the culprit seemed to be sugar.  When I did GAPS/SCD (no sugar except honey) my accidents stopped at night.  It's a huge change to make, but thought I would mention it.

Metamucil totally worked well for me.  I bought the wafers and had just one a day (1/2 dose) and that really helped thicken things up.

Laura

Okay, so I contacted my doctor and told him what I've told you guys here as well.

He said to me it might seem like I'd need to take Cipro longer, aprox. for three to four weeks. Furthermore I should try Metamucil as I suggested him.

The thing is: for about five days or so I have no more problems (I told my doctor as well). Should I still take Cipro for three to four weeks? Seems odd to me.

Additionally, how do you handle it with Metamucil? It says that one should only use Metamucil in combination with Immodium while a doctor has an eye on it. It's not like I take Immodium every days but nevertheless it would be nice to know. As I don't have any problems at the moment and my stool is like it's always been, is it smart to take Metamucil? I took one pack today and haven't noticed any difference. And a last question: it says that it has an impact after 12 to 24 hours. I can't believe that somehow, in that time I've been to the toilett for four times or so. What are your experiences with it?

Any Metamucil instructions you find will usually be for folks with colons; that changes the time scales a lot.

Where on earth did you read that Metamucil + Immodium needs medical supervision? Don't take any medication at exactly the same time as Metamucil - space them by a couple of hours if possible. But I've used both Metamucil and Lomotil every day for perhaps 14 years (prescribed that way by my Dr.), and have never heard of an incompatibility.

take the Cipro as prescribed ie 3 or 4 weeks, whatever the doc said to fully wipe out the pouchitis. if you don't then you will be committing the cardinal sin of everyone regular joe who say my doc gave me antibiotics for X period but after Y days I felt better so I stopped taking them. MISTAKE. well probably anyway. in some respects haven't you already gone through a short course only to find you presumably need it again? I understand not wanting to take it forever, but 3 or 4 weeks is not = forever.

and um yeah any instructions on Metamucil are for people with their colons intact. its essentially used off label if you will to absorb water for those of us special people in life who live without a colon.

I have no idea where or why anyone would write instructions for Metamucil for and Immodium for the general public, so once again I'm confused by your question.  I guess I would say if in doubt, ask the doctor. I will say you probably want to use Immodium with Metamucil judiciously, that is to say start slowly and see how your body responds to different dosages of each. I have a friend relatively newbie with jpouch who probably overdid the Metamucil and I don't recall if she was popping Immodium too, she might have been and then suddenly felt on the verge of an obstruction. so caveat Metamucil/Immmodium takers!

Regarding Metamucil + Immodium: 

I haven't read that anywhere on the internet but in the official package insert  There it says something like 'The following medication should only be taken under medical supervision if you take Mucofalk Orange (my version of Metamucil with the same ingredients) at the same time: Medication that slows down the natural behavior of the colon (e.g. Loperamid (Immodium), opiates) because of the risk of an Ileus.

I mean, I thought about it and that it's veeery unlikely for us to happen but nevertheless I asked as asking is for free here

Regarding Cipro:

It's not like I stopped midway. I have taken the usual 10 days (which helped since now) and after that medication it got better until I have no more problems. As I have no more problems and have taken the full 10 days it seemed odd to me to take it for 3-4 weeks. That's why I was asking. But yeah, taking it for this short time won't cause any trouble, I've been through worse

Once again to the Metamucil:

Do you guys really only take it when your stool is too loose or on a regular basis? And when would the impact kick in? I know, it differs from one to another but having some experience by other people may help As I said, I have taken one dose and haven't experienced anything different.

I hope I don't get on your nerves but I'm still quite insecure regarding my pouch. It's not like it's completely new anymore but nevertheless I don't have as much experience with it as you guys have and I don't want to mess anything up by doing dumb mistakes 

I appreciate your help a lot!

I always have terrible GI issues when dealing with a bug unfortunately, so I guess it's not surprising you had worse incontinence while sick. It usually takes me a while of probiotics, immodium and eating well to return to normal.

Also, to second LHETTI, if I'm not sick (virus, pouchitis or otherwise) and I'm having leaking problems, it's usually a diet issue for me. Too much gas means it's harder to keep those little leaks in. I did FODMAPS with my GI nutritionist to identify which carbs are the worst triggers for gas for me. It doesn't actually "cure" anything except make my life a lot more comfortable by knowing what foods to avoid.

Here's the thing. Package inserts are mostly applicable to the general population. Specifically, Metamucil instructions are for those with a colon. But, even for those with a colon, it is prescribed to help with diarrhea and bulking the stool. For us, the effect is sooner and the actual timing depends on your specific transit time. Think more around 2-12 hours instead of the 12-24 hours. It does not really slow the gut, but if you have strictures, too much fiber can clog you up. 

If you have not noticed a difference, you probably need more. Just increase it gradually.

Jan

@LHOLDEM

The problem was that I actually started feeling better or even good again and the problems still were going on. And furthermore, after a longer while, they came back But it seems like it's taking more time to become normal again. That's what I have learned from this situation.

Which probiotics do you use to support your body getting better sooner than later?

@JAN

Yeah, obviously they are for people with a colon But as there are no information about the situation for people like us, I wanted to get my information elsewhere

I still don't know whether it's actually useful right now as my stool is normal again. Does Metamucil still do good things?

Metamucil will give you a slightly more formed stool. If you try it and like it, then keep using it. If your untreated stool works fine for you, then don't bother.