Trying a short course of rifaximin for SIBO

[JDTM]

Okay, so I think we're gonna try a short course of rifaximin to get rid of what could very well be SIBO. Gassy, bloating, the works. My meds have seemed to have gotten rid of the inflammation (no more mucus, etc.), but a few nagging issues with this remain.

Here's the thing: How should I follow up after (or during) the course of antibiotics? Any recommended probiotics? I have a bunch of Align hanging around, should I dip into that? Other recommendations?

I know that an altered diet will help as well, but I'm mainly wondering about probiotics used in conjunction with antibiotics, and whether any of your have tried and found some success with a short course of rifaximin or other antibiotic treatment, especially if you have a mild-to-moderate case of Crohn's in the small intestine.

Thanks peeps!

 

[SarahD]

Hi Jesse,

I'm curious about this too, as Rifaximin was suggested as a possibility for me by my consultant during my last appointment. I'd love to know how you get on. It sounds like many patients respond very well short-term but less so longer term. Worth a try nonetheless.

The only advice I was given was that probiotics should be taken, but take the antibiotic and the probiotic as far apart as possible (i.e. one first thing in the morning and the other at night) so that the antibiotic doesn't kill off all the good bacteria in the probiotic.

Good luck and please update us as to how you get on!

Sarah

 

[JDTM]

Very cool -- I will be sure to keep you updated. Yesterday at my appointment, I was hesitant about taking an antibiotic, but after a bit more research on SIBO and the role of antibiotics in Crohn's disease, I felt like it was worth a shot. I'm not really improving much, just kind of steady-state and feeling about 70-80% on any given day, so I figured why not.

I called the gastro office this morning and left a message saying that I'd take her up on the prescription; just got the call back saying the prescription would be filled and to call back with any questions. I will likely not start taking this until Monday, however -- I am part of a Crohn's study that involves periodic surveys, and I have yet to submit biological samples. I plan on doing it on Monday, and I'd rather wait to start antibiotics so I don't skew the data. I've been dealing with occasional discomfort for long enough, so I figure a couple extra days won't kill me.

 

[JDTM]

Also, Sarah -- I see that you have previously been on Cipro and Flagyl. How did those work for you? I realize that they are different than rifaximin... I think that rifaximin is less systemic, as it isn't easily absorbed by the body, and it just goes to work on the bacteria in the gut and not much else. (I could be mistaken.)

My doctor also mentioned Flagyl, but she explained that rifaximin wasn't systemic like most other antibiotics. When I hesitated, she admitted that she wasn't a big fan of antibiotics either, but they did have their place in the treatment of Crohn's, and it makes some sense that this treatment could possibly work.

 

[SarahD]

I'm in a fairly similar situation, being in a steady state. I'm following the LOFFLEX diet and am maybe 90-95% better but just can't get into full remission.

I've been on flagyl twice and cipro once. The first time on flagyl I took it for about a week and my pain went away and I felt great for a few weeks. Unfortunately it didn't last and my symptoms returned. About 6 months later I was prescribed flagyl and cipro together, again a 1 week course. Unfortunately they didn't help relieve my symptoms at all this time and I had a horrible reaction to the cipro as well. They clearly did their job at getting rid of bacteria though, at least in some parts of my body, because I ended up with a couple of really stubborn yeast infections!

You're right about Rifaximin not being systemic, it doesn't get absorbed into the blood stream and acts almost completely in the gut, which means it has fewer side effects and acts just on the part of the body we need it for. Judy did some fantastic research for me when I asked about Rifaximin a couple of months ago, which you can read here.

Sarah

 

[JDTM]

Well, I started Xifaxan (rifaximin) on Saturday, and... so far, so good. If things keep going as they are, this might be the last piece of the puzzle that puts me into remission, but the trick will be seeing if it holds. I've stocked up on some plain Greek yogurt and I plan to cool it on the carbs/sugars for a bit once I'm done with the medication, but yeah... I'll keep updating!

 

[JDTM]

Day... uh, four? I was really gassy over the past few days, but even that seems to have cleared up somewhat. So maybe I was close to remission to begin with, and this is just taking care of the resulting SIBO? Weird.

I'll keep updating as I'm curious to see whether or not this will have any effect on my stomach pain, and/or if it holds up for a decent amount of time after I'm done taking the medication.

 

[JDTM]

So, day five. I am NOT off to a good start this morning, as I've had to use the bathroom three times already. Guhhh. I'm hoping this is a bump in the road and/or something that was my fault -- last night, my wife and I met up with a friend and headed out to dinner, and we went to a little pub-style place (one of my favorite places in town, and I haven't been in a long while). I had been doing really good up to this point, but I decided to forgo getting a burger or something along those lines. Instead, I ended up ordering a huge plate of tortellini w/ veggies, figuring that the veggies would be good for me and I could probably handle them, and I absolutely LOVE tortellini, so why the hell not. I only ate half of the order and took the rest home. Felt fine the whole evening.

I don't necessarily feel lousy as if I were flaring or anything, but still -- kind of a bummer when you've had a few days of normalcy!

Starting to theorize that red bell peppers are the enemy. Hmmmm.

 

[JDTM]

Quick update: Things normalized somewhat soon after the bump in the road, and I'm back to doing pretty well. I'd say I feel at about 90% at any given moment -- I have momentary reminders from my body throughout the day that I do, in fact, have Crohn's disease, but it's manageable. I'd like to get to the point where I can just forget that I have it altogether for a while, but still... so far the rifaximin seems to be doing it's job. I usually feel much less gassy, that's for sure. Still dealing with occasional cramps. I think that once I'm done with this course of antibiotics and I stop taking budesonide at the end of the month, then I'll really start to get an idea about where I stand.

 

[JDTM]

Also, I feel the need to clarify something. Although my GI mentioned trying this medication after she asked me about whether I was experiencing bloating, she talked to me a bit about SIBO and how it could be causing persistent (but relatively minor) issues. That said, I was NOT tested for SIBO via a breath test or any other means -- it was only a hypothesis. The doctor mentioned it during our office visit, and I said that I'd think about it; I called back later after weighing my options and basically told the receptionist that I'd be willing to try the medication. However, I didn't specifically request any sort of testing.

 

[kiny]

When you said you had cramps, do you not think it's still inflammation.

I had a lot of inflammation and I was put on budesonide together with amoxicillin (augmentin), the inflammation didn't go away after 2 weeks and they used infliximab to get it under control.

I asked about Flagyl and rifaximin and the biggest worry was that the inflammation wouldn't be under control fast enough and that I would develop resistance, very common with Flagyl and rifaximin, so when later on they make an antibiotic for CD people who have used Flagyl or rifaximin have higher resistance strains of bacteria.

 

[JDTM]

Hey there kiny,

So, I think the inflammation has gone down quite a bit, and I wasn't sure that's what was causing the cramps -- here's why! My diagnosis was mild, and the inflammation was not severe or even moderate. I've been on budesonide for a while now (a full month of the full dose, another month on 2/3-dose, and this month I'm on 1/3-dose as part of the final bit of tapering) which seems to have knocked down the inflammation as well -- my BMs are fewer and further between, and the mucus that used to be present on a constant basis has been gone for a while now. The inflammation could still be there to a very slight degree, but overall it made sense to me that the nuisance symptoms might be caused by something else, hence my willingness to try an antibiotic for a brief amount of time.

Also, both my doctor and I are operating under the assumption that I probably have IBS as well, which doesn't surprise me. I'm currently trying to get my anxiety under control, as I'm sure that it's not helping me health-wise. If I can manage my stress a bit better I might be in better shape, both in terms of IBS and avoiding triggering an IBD flare. I had read somewhere that rifaximin is sometimes used to treat IBS, but I wasn't quite sure what to make of it.

I also worried about taking antibiotics in general, which was part of my hesitance. I was happy to hear that rifaximin was less "systemic" than other commonly used antibiotics (like Cipro or Flagyl), so I figured it was a little less risky to give it a try. In addition, I'm much more comfortable with a shorter, 2-week course, versus being on an antibiotic for an extended amount of time. If it helps me out, then great! But if not, I'm not sure that I'd be super anxious to jump on another antibiotic for exactly the reasons you mentioned -- I don't want to develop any super-resistant bad bacteria if I can help it. We'll see if it works.

 

[JDTM]

Day... um... ah, who cares. I'm nearly at the end of this prescription, so I must be around the 2 week mark.

At this point, I'm less convinced that the rifaximin is going to be the final push into good health that I was hoping it would be. I'm still having off days (like today), plenty of gas/bloating/cramping depending on the day, and I still can't handle certain foods (veggies in particular, which is frustrating). So, either the bacteria isn't what was causing me most of my problems in the first place, or I have some sort of really stubborn IBS going on that's making things difficult.

Or, I could be flaring up again as I near the end of my budesonide.

Or, it could be some sort of stubborn bacteria that isn't getting knocked out by the rifaximin.

Or it could be a million other things. Man, **** this disease.

I know that there are no silver bullets for Crohn's disease, but after reading more and more about the heavy-hitter medications that can be "miracles" for some people, I'm starting to feel like it's time to cave in and give something like Imuram a shot. I haven't really shaken this thing since February, and I really think that I should be feeling better by now if I'm such a mild case.