What I I have read from other people when antibiotcs stop working is that the next step is most likely Biologics. How do you feel about biologics??? Are you open to trying those again???

Sorry to hear you are doing poorly. Have you tried metronidazole yet? It another popular antibiotic for Pouchitis.

Figuring out whether the blockages are related to the pouchitis will be important in figuring out how to proceed. It’s common for Cipro to lose effectiveness eventually - when it happened to me adding Flagyl did the trick to manage the pouchitis, but I wasn’t also getting blockages. If the blockages are near the pouch entrance then antibiotic adjustments may be sufficient, otherwise looking for an effective biologic is likely to be more effective.

Short-term steroids are generally not a big problem, so I wouldn’t worry much about them if you aren’t having significant side effects. They hopefully will buy you the time to work out an effective long-term treatment.

Just wondering.

Has anyone here reading this have one biological med stop working (I have) and tried another and have that work?  (I haven't). 

R.

I have not gone on Biologics for Pouchitis, but I will be trying Entyvio. My doc says it could help.  So far for two years I have been on Metronidazole only.

Many moons ago I was given remicade. Oh man. I was sick.

Remicade worked so well I was actually amazed to be able to have solid bowel movements. I remember the feeling. Still.  It was amazing.

Well. About two years into treatment which was still working I had to have minor hernia surgery. I was told I had to stop my remicade treatment.

Well. It never worked again.

I tried humira. Stelara. Neither worked and I ended up where I am.

I'm fine with it. But I did find out about a decade after my hernia surgery that I didn't have to stop my remicade treatments. The surgeon who did my hernia said I had to stop.  I had no feelings either way. Mad? Too late.

That's why I was wondering as I posted above.

Sorry this is off topic and I certainly hope Liz can find a solution. Because it's miserable and no way to live.

R.

So to answer some of the questions in the chain.. Yes, have tried other antibiotics none worked except for Cirpo.  Also was on Remicade before I got the J pouch - it worked for a few months and then no more.  Since they thought it was UC we did the J-pouch.

I am open to biologics if they help. I am just scared that nothing else will help.  Anyone have luck with the biologics when either antibiotic resistant pouchitis or rediagnosed to Crohns?

In my case Flagyl alone had never been effective, but it nevertheless helped a great deal when added to my failing Cipro regimen. The combination has worked well for about 8 years.

The term "broad spectrum" antibiotic means it covers a lot of bacteria but not all. Cipro and Flagyl are from completely different antibiotic families, and work on different bacteria. It's common sense that using them in tandem ought to provide better results than using either one alone, and that was my experience as well as Scott's. A lot of people unfortunately struggle with the side effects of one or the other, particularly flagyl. If side effects are not an issue with either drug, there is no good reason not to use both in tandem in treating stubborn long term chronic pouchitis. I did for many years, before going on Remicade and having it work as well or better than antibiotics did.

There are tons of other biologics besides Remicade- Entyvio and the newer Skyrizi just to name 2.