Night time incontinence

After 5-6 years on Cipro I started to have breakthrough pouchitis symptoms exactly like that. I experimented with different antibiotics (patience is required) and found that the combination of Cipro and Flagyl in rather low doses worked well, and has continued to work for 8-9 years. I discovered that they work just as well for me taken once daily, which is more convenient. If I’d been unable to find an antibiotic (or combination) that worked I’d have started trying biologics.

Thanks, Scott, Cipro used to work well for me, but I'm not sure if it still does. I can't take Flagyl, wish I could!

Hello everyone!

I am having full on BM’s every night and this week as I sat at work in my underwear. I had been totally fine for quite some time and then started drinking raw kombucha and I think it messed me up?

Any ideas? my gastro had prescribed cipro in the past and it had done wonders but she said it’s not a long term resolution for me.

@barefootbri Not all gastroenterologists are familiar with chronic pouchitis treatment, which often includes long-term Cipro. In any case, nothing you wrote suggests a chronic condition, and your GI would probably be happy to prescribe a course of Cipro to get you back on track. If not then you probably need a new doctor.

Many people need low dose long term antibiotic use to keep the Pouchitis under control.  You can get yourself under control and then use the smallest amount of Cipro needed.  Cipro is a very safe drug. The only side effect that doctors are concerned about is tendon damage, but that happens like less than 1%.  Going to the bathroom at night and in your pants at work is not acceptable.  I am sorry that is happening.  Ask your doctor “what is the strategy for long term resolution”, but in the meantime get some Cipro.  I have learned from many on this site that not all gastroenterologists understand Pouchitis (lots don’t).

thank you so much, Doug!

I appreciate that. she said that my crohns has spread to my jpouch but the only real symptom currently is the nighttime incontinence. a few weeks ago I was fine, no nighttime incontinence and regular BMs. I think it’s caused by me thinking that drinking raw kombucha would be helpful? that’s really when it started all up.

i’ve asked her for a script for cipro. fingers crossed!

thank you for your support! i don’t know anyone like us.

Good luck!  Happy to be supportive.

thank you!

Scott, Just curious, what's the smallest amount of Cipro is needed to keep Pouchitis in control. I was taking it for the longest time and then it seemed to stop working.

People vary in what Cipro dose is necessary. I gradually lowered my dose to find the minimum amount necessary. In my case that was 500 mg once daily. When Cipro gradually became ineffective I tried various things and settled on Cipro + Flagyl, even though Cipro alone had stopped working, and Flagyl alone had never worked.

Thanks, wish I could take Flagyl but I remember when I did a long time ago it made me sick. Maybe I'll try it again.

Flagyl actually caused my UC which turned into crohns.. 😩

I can't help with the Flagyl or Cipro, as I've only ever used them short term. For night time incontinence I do a number of things. Eat by 6;00 pm, nothing after that. Limit fluid intake after dinner too. Set my alarm for3 or 4 hours after I go to bed, get up, empty pouch. Generally now, I wake through the night now anyways. Problems are usually when I am super exhausted, and don't set alarm.

I'm also still on Cipro and Flagyl for chronic pouchitis (low maintenance dose of 250 mg / 200 mg at late evening). I found it is usually sufficient to take it every other day.

When I tried to abort antibiotics completely I managed to get around for 2...3 weeks quite well, then my output became too thin, accompanied with weight loss and minor cramps. Though inflammation and BMs seemed to be hardly increased.

At that point I started antibiotics again, beginning with 2x 500 mg of Cipro and 2x 400 mg of Flagyl each day for two or three days, until things normalized again. Afterwards I reduced the dosage over several days to the above mentioned maintenance dose.

Thanks for both of your replies .... great advice. I'm just paying that I can take the Flagyl with no problems.

Hi Mema 1,

many people feel a little nauseous the first week or so of Flagyl- but then the nausea seems to fade for many.  I am not sure what your side effects were.  I hope it works for you.