Wow, I’d sure be tempted if I discovered, as you have, that the Cipro and Augmentin weren’t doing what they should, and a different medication worked great. Severe leakage is no way to live if there’s a decent alternative. I don’t know if there’s much experience with long-term Bactrim, which makes the risks potentially hard to predict. I’d be interested in whether a short course of Bactrim (e.g. 2 weeks or so) got things back into some sort of balance, and then the Cipro (etc.) worked better afterwards. If the Cipro did work better but it started to wane then you might have some success with rotating between Cipro and Bactrim, alternating a couple of weeks on each. You might also give the biologics a try, since they are at least recommended for long-term use. I hope you find a good answer!

Thanks Scott, the doctor said that with Bactrim I'd have to be checked for many things, including liver. He suggested Rifaximin or Penicillin (which I've never heard of using).

Rifaximin is an excellent one to try, if you can get insurance coverage for it (it's very expensive). It really does sound like you are past due for a change. I hope you find the right formula!

The problem is I don't have the coverage and it would cost me a fortune. I checked a site that I could have gotten it for nothing, but I didn't apply. Thanks for the comeback! The doc would like me to stop using antibiotics completely, he just doesn't understand what happens when I don't use them, I'm sure you must understand.

Is the doc proposing biologics, or just misguided lack of treatment? Plenty of docs and patients shy away from long-term antibiotics, but only the bewildered would choose untreated pouchitis on purpose. FWIW it’s usually possible to get the biologics inexpensively, even though their list price is eye-popping.

There is probably a path by which you could get rifaximin covered, assuming you have any insurance at all. The appeals process starts with the insurance company through a couple of levels, and then can escalate to your state’s insurance regulator. This process really needs your doctor’s cooperation and effort, and the best-case scenario tends to get it covered with an appreciable co-pay. This often means you’ll hit your annual out-of-pocket maximum, but then the drug (and everything else) is free for the rest of the year. I used to just budget for that.

Thanks, Scott, I'm going to try Cipro again with more lomotil. BTW, I'm on Remicade which he swears is working, I'm not too sure.

I get a SIBO/microbiome imbalance 3x/year.

I always take Bactrim DS for 14-21 days.

It works immediately and my doctor has no issues prescribing it me.

I think that 14 - 21 days is no problem, I wanted to use it longterm.

What about rotating in and out of it?

Several weeks on, week off, or something like that?

That's what I'd love to do, but I don't think he's willing to try that. Thanks though.

I don’t get it. No matter what antibiotic you are on (other than Rifaximin), you’d need monitoring of liver and kidney function if you were on them long term. Plus, you are (or should be) already being monitored because of Remicade. Ordinarily, being on the biologic is supposed to get you off the antibiotics. That is why I am on Remicade.

That said, the fact that Bactrim provided a big improvement for you tells me that you have an overgrowth of bacteria that was not covered by Cipro or Augmentin. I was on Bactrim for a year (low dose) to control chronic bladder infections many decades ago. Maybe once you get things under control, you mostly need a bowel slower, like Imodium or lomotil. I have been on Imodium for what seems like forever.

Good luck!

Jan

Thanks, Jan, I thought that the Remicade would help, but it doesn't. I often wonder if I'm taking it for nothing. As far as a bowel slower, I take between 6 to 8 lomotil a day! The doctor was going to put me on Rifaximin but it would cost me $800 a month, I don't think so!!

Perhaps the Remicade helps with inflammation seen on your scopes, but not for functional issues you have on top of it. Both issues need attention. I presume you have tried Imodium and it does not help?

Getting insurance coverage can be a real pain. It requires persistence and your doctor’s cooperation in applying for an exception. Many insurance providers are mostly in the business of providing denials, hoping you will just give up. Plus, it is hard to get your doctor to fight for you. They have other work to do too.

Sometimes it is just easier to go the path of less resistance. I wish I had better answers for you.

Jan

Thanks, Jan, I have an incredible doctor who I think is fighting for me, but so far nothing....I will, however, keep trying.

I never have tried Imodium, just have been using Lomotil since I think it must be stronger.

Stronger or not, lomotil may not be better, for you. They say that Imodium helps with sphincter tone, so that may be helpful for you. Plus, it does not have atropine, which is problematic at higher doses.

So definitely worth a try.

Jan

I didn't know that it helped with sphincter tone which I need very much! It's over the counter, isn't it or is there a stronger version with a script.

OTC is the same thing. But, it only comes in blister packs (per FDA rules) to prevent potential abuse. The Rx version is a capsule (same drug) and can come in higher quantities in a bottle. However, since it is available OTC, insurance usually does not cover it (so you pay retail). I get a reduced cost, but only because my doctor applied an exception for my script. OTC is not intended for chronic use.

I used to take 8 a day, but only take 4 a day now.

Jan

https://pubmed.ncbi.nlm.nih.gov/18477966/

Thanks, Jan, I'll get some and try it very soon. Do you only take 4 because of the Remicade?

No, I just reduced my dosage gradually over the nearly 30 years with a j-pouch. I take a “holiday” from it from time to time to see if it really makes a difference for me. Turns out I still need it.

Jan

By the way, you can buy bottles of loperamide OTC on Amazon, but I am not sure I would trust them. They are sourced from China and it is not clear what is in them.

Jan