I have been on antibiotics for chronic pouchitis since 2014, about 6 months after takedown. For about 15 years, it was Cipro, but my new doc put me on a rotation as well as Humira. I would like to get off the antibiotics and, since I am not working at the moment, decided to try. Last time I went cold turkey. This time, I took a week to wean myself off by taking Augmentin every other day. By day 4, I was explosively gassy and stool was much less thick. Day 5 brought increased frequency - as in 5 times at night. The days, like usual, have been less frequent, but it starts up earlier than usual and is kinda constant from about 4 PM on.  My cuff area has gotten sore too.

For those of you that have gone off antibiotics, is this how it goes? I am not sure I will be able to do it. On my last scope, the pouch was way less inflamed on the surface, but biopsies showed inflammation. Is the inflammation the pouchitis? Do the antibiotics control inflammation? I will ask my doc these questions next time I see her, but that is in about 2 months. Yes, I could try to get in earlier, but with the whole Covid 19 thing going on, I prefer to just stay in and avoid doctors' offices. This is not an emergency, just me trying to change things up.

Original Post

Try Rifaxan it is antibiotic but very different than what you are on.  Look at up, I think it help your issues. 

Kta, just to make sure I understand correctly: when you’re on the antibiotics you feel well and do well, but you want to stop them. When you stop them the condition they are intended to control returns. Have I got that right?

When I stop antibiotics my symptoms come back, too.

Yes, Scott. That is correct. I guess I just don’t know if it is normal for j- pouchers to have explosive gas and crazy frequency. I have never really been off antibiotics since 6 months past formation of the pouch. There is so much out there about a healthy biome in the gut and on the and I feel like I keep killing mine. But I know I could not work at my teaching job without the antibiotics. Even if I weren’t teaching, quality of life would not be as good without them.  Am I overthinking this?

Yes, you are overthinking this, IMO. A person with a J-pouch will never have anything close to what is generally meant by a “healthy biome.” We don’t have colons, and that where that microbiome is supposed to live. No one has any idea what a healthy pouch microbiome consists of (heck, they barely have any idea what a healthy colon microbiome consists of). It does seem like there are certain *unhealthy* pouch microbiomes, at least in some people, and antibiotics seem to help those people. This is primitive science, but it’s much better than putting yourself through misery in service of an even-less-well-developed idea. If you get significant side effects from the antibiotic(s) that’s a whole different conversation.

@kta when you mention sore "cuff"...for me, I feel like I should be a spokesman for Canasa suppositories. If you haven't tried them, give them a whirl?  They have literally been lifesavers for me for ~10 years related to "cuff"/cuffitis and and acute stinging/burning and never had a doc tell me they were concerned about side effects. They aren't cheap if you don't have insurance coverage. But for a couple years my insurance didn't cover them and I got a somewhat affordable price from canadian pharmacy.

Mike - I used Canasa for a long time until I developed an allergy to it. The swelling went clear into my mouth. Yes, they helped massively. Now I use hydrocortisone suppositories as needed. 

My doctor told me I will be on antibiotics for life, when I stopped taking them my symptoms got worse. Also you will build antibodies when you stop taking them. Consider a probiotic, vsl3 or vis biome. 

I’m pretty sure you don’t “build antibodies” to antibiotics if you stop taking them. That’s a problem that seems to be limited to Remicade.

When antibiotics are used for a specific infection with an inadequate or incomplete dose, sometimes the targeted bacteria can develop a resistance to that antibiotic. That’s why the instructions are generally to take the full course, even if you feel better. Pouchitis treatment is a bit different, since many bacteria are being “targeted” (even though we really don’t know exactly which bacteria would be best to get rid of or add). Nevertheless, over time a pouchitis antibiotic can sometimes become less effective (that happened to Cipro for me). Switching antibiotics every 2-3 weeks is thought to help prevent this, but is only possible if you have several antibiotics that work. Stopping (really switching) the antibiotics in this case doesn’t seem to reduce effectiveness.

Pouchbro, I don’t know what antibiotics you might be thinking of, but in any case it’s not generally true that antibiotics are so limited in how often you can use them, unless you have side effects or are approaching a toxic dose (e.g. enough to cause something like hearing loss).

Add Reply

Post
Copyright © 2019 The J-Pouch Group. All rights reserved.
×
×
×
×
Link copied to your clipboard.
×