Rebecca-

For me this is just a sign that pouchitis isn't adequately controlled. One or more of those rotated antibiotics may have lost efficacy for you. I found that adding Flagyl to my Cipro regimen got it back under control, even though Flagyl alone had never helped me. Combining antibiotics makes it harder to rotate them, though.

Are you noticing the leakage with a particular antibiotic, or more than one?

scott i have noticed it on different antibiotics...could it be a sign of something really serious i wonder... i was on kfelex recently three weeks now on augmentin

scott do not see anything under help forum..help!!!

scott also did not get notification of that reply you are telling me to look for under help?

I think it may be time for another scope, unless you had one recently. Scott is probably right that your pouchitis is not adequately controlled. I thought my pouchitis was under control with rotating antibiotics, but my scope last week showed severe inflammation in the blind loop of the pouch and the rectal cuff. If my biopsies come back negative for dysplasia, we are going to revisit my treatment, including changing my biologic again. 

The main thing is that even if you think you have the answer, things can change.

Jan

Rebecca, *this* is what I called the "Help Forum" (it's called "Help! Need Advice Now!"). You have seen (above) and replied to the message here that I was talking about.

thank you scott..

jan i have appt with doctor in april earliest i could get with the doctor i am using in l.a now..have not had exam in a while .

i do not seem to have any other symptoms of my usual issues with pouchitis just that night time leaking,,

wondering if my change of diet responsible..have been off scd now added glutton free instead of all starch elimination and because of that probably intaking more processed foods like breads that have say for example  with some sugar in them... at first just added some rice now extended it..

jan there is nothing i believe more with this pouch that things can and do change..and unfortunately not necessarily for the better!!!! thats why i put something on site about this new development...i guess i could try to clean up my eating again as to sugar and starches and see if that is a factor before i need to go for scope.

That probably is all you can do while you wait to see the doc. At least you can go in feeling you did what you could diet-wise in the meantime. I had to wait a couple of months for a scope with my doc. I was surprised how bad my pouchitis and cuffitis was last week. I am now just hoping for negative biopsies. 45 years of UC is a concern for me.

Jan

jan i am  betting  your biopsies are negative... i think i remember ct barrister having had some serious looking inflammation in pouch a while back he was very concerned..and he too did not feel any different as far as pouchitis went..he seems to be doing fine  and rotating antibiotics i think..

isn`t it strange that one could feel no real symptoms of increased inflammation yet come up with a nasty looking pouch...

i usually judge how my pouchitis is doing by symptoms but as you said things change..i think i have not had a scope in a year and a half...i guess one needs to go yearly?

keep us informed of how you are doing..

Pouch scope timing should depend on your original diagnosis, whether you still have a cuff, and whether or not you have ongoing issues. For me, I hit the jackpot with pancolitis, a retained rectal cuff, and chronic pouchitis. So, sure, I am hopeful that I'll continue with negative biopsies. But, I also know that long term inflammation can lead to dysplasia and/or neoplasia, so I am always preoccupied until my results are in. Same thing with my mammograms and PAP tests.

Bottom line, yeah, you are due. Your appointment in April is not for a scope? I don't think my GI has seen me with my clothes on since my first consultation 10+ years ago. We communicate by email in between scopes.

Jan

jan my appt is indeed for a scope because i have not done it in awhile and because  i am trying to set up relationship with this dr. melmed in la ..he has seen me once but i did not do a scope with him..dr. shen has been my doctor but it was tough going from cal. to cleveland once a year so i got sloppy with going yearly.. dr. shen recommended him when i asked for a closer dr. to santa barbara.figured i was always uneasy not hang a dr. near me in case of emergency etc..so although i was due with dr. shen i thought i better let melmed do it to establish patient/doctor relationship..

Oh that's good! I agree that traveling across half the continent is too much for regular maintenance, and you need someone local for urgent situations. You can always follow up with Dr. Shen as needed or your new doc can consult with him.

Good luck holding things together until April!

Jan