It may be pouchitits? Would you like to try biologics? Remicade?

If symptoms repeatedly return when antibiotics are stopped, sometimes the best choice is to stay on antibiotics, at the lowest dose that works. This is essentially chronic pouchitis (or irritable pouch syndrome if no inflammation can be seen). I’ve been on antibiotics for 13 years with excellent success. If that turns out to be your situation then ideally you could find two or three different *effective* antibiotIcs and change which one you’re taking every 2-3 weeks - this is called rotating antibiotics. If the continuous antibiotics stop working, or create unacceptable side effects, or just seem like a poor choice for you, an alternative that often works is a biologic medication like Remicade or Humira.

I’ve also found that high-dose probiotics help in my case, but they are expensive if your insurance doesn’t cover them. Good luck!

@Scott F posted:

If symptoms repeatedly return when antibiotics are stopped, sometimes the best choice is to stay on antibiotics, at the lowest dose that works. This is essentially chronic pouchitis (or irritable pouch syndrome if no inflammation can be seen). I’ve been on antibiotics for 13 years with excellent success. If that turns out to be your situation then ideally you could find two or three different *effective* antibiotIcs and change which one you’re taking every 2-3 weeks - this is called rotating antibiotics. If the continuous antibiotics stop working, or create unacceptable side effects, or just seem like a poor choice for you, an alternative that often works is a biologic medication like Remicade or Humira.

I’ve also found that high-dose probiotics help in my case, but they are expensive if your insurance doesn’t cover them. Good luck!

Would probiotics take over for antibiotics? How long before they start to work?  I haven't tried this yet, could be worth it.

@Bent-Arne posted:

Would probiotics take over for antibiotics? How long before they start to work?  I haven't tried this yet, could be worth it.

Most of the research data suggests that you can’t expect to manage pouchitis with probiotics alone. That being said, I was able to delay starting antibiotics for about a year with an appreciable dose of VSL #3. They can take a couple of weeks to start to do whatever they’re going to do. The dose I currently take retails for over $600/month, so there may be some difficult trade-offs to consider.

I use for gas pain etc Levsin/SI.  It works fast and has been my life saver.  If you have anal pain you may have cuffitis/proctitis.  I use Canasa suppository.  Good luck.  I’m sorry you are going thru this.  

@grandmaof1 posted:

I use for gas pain etc Levsin/SI.  It works fast and has been my life saver.  If you have anal pain you may have cuffitis/proctitis.  I use Canasa suppository.  Good luck.  I’m sorry you are going thru this.  

I sent my fundraiser for IBD to your email, feel free to check it out if you would like to

I've talked with my gi, and I'm gonna try 2 weeks on cipro and two weeks on flagyl, though a lower dose of flagyl. I'm on cipro now and everything is super fine again.. No air struggles, no burning, only 3-5 times on the toilet dali. No problem holding it for a very long time. And i can eat everything again without issues.

@Bent-Arne posted:

I've talked with my gi, and I'm gonna try 2 weeks on cipro and two weeks on flagyl, though a lower dose of flagyl. I'm on cipro now and everything is super fine again.. No air struggles, no burning, only 3-5 times on the toilet dali. No problem holding it for a very long time. And i can eat everything again without issues.

Thanks for the update, hope everything works out!