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Starting Rifaximin (Xiifaxin)

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Crohn's Disease
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Posted 9/19/2015 10:35 PM (GMT 0)
I'm supposedly in remission, but around 10 days ago I started with dizziness and ended out with D, which has continued through today. All my blood tests and stool cultures were normal. I have ongoing IBS, but I tend toward constipation, and only really have D when I have taken too much laxative, so this is unusual for me. I've been taking Florastor probiotics, but it hasn't helped. I called my GI and we are trying Rifaximin to see if it helps for around 5 days.

Anyone out there done this before? Without a test confirming SIBO (small intestine bacterial overgrowth) and normal stool tests, can we still assume that's what's wrong with me? I'm hoping it helps. I can't eat much without feeling gassy and bloated. I only have D 1-2 times a day but all my bowel movements are D, and it's driving me nuts! Any ideas are greatly appreciated;-)
Posted 9/21/2015 6:28 PM (GMT 0)
Gumbo I'm on rafaximin now and I didn't have a Sibo test. I'm doing awesome too!!! I will take it for 7 days 550mg twice a day, then take two weeks off and if things flare up I will do a cipro/flagyl combo. And then in two weeks go back on rafaximin if things go backwards. Antibiocs have been great for me.
Posted 9/22/2015 2:30 AM (GMT 0)
Hmmm, that's not fun. :( I'm not sure, but make sure to drink lots of fluids! D is more dehydrating than vomiting.
Posted 9/22/2015 2:52 AM (GMT 0)
Well, the Rifaximin was a disaster for me. After about three doses I started having massive D, much, much worse than the original D I was trying to treat in the first place!! I was also nauseous and felt very ill. So I thought maybe it is die off and will get better, but I need to work, and I completely lost patience with it. So I switched to Cipro last night and I seem to be doing a little better. I had one massive semi-formed poop fest, but then felt better the rest of the day and was able to make it through my work day. I'm also taking Florastor probiotics, which usually help me, but not yet this time.

Since all my stool and blood tests were normal, we don't really know what we are treating, but I feel pretty strongly that I needed something. I was sick for around 10 days and it wasn't seeming to clear on it's own. My Crohn's is supposed to be in remission, but I'm wondering if that is really true.....getting a little worried here!

Therearemiracles....that's interesting that your doc has you on ongoing antibiotics. Do you have abcesses or something that they are treating that way? Just wondering. Thanks for your responses!
Posted 9/22/2015 2:56 AM (GMT 0)
oh never mind therearemiracles....I read your post and see you have a fistula....now your treatment plan makes more sense to me.
Posted 9/22/2015 2:43 PM (GMT 0)
Well it's three days in and today I feel a little nauseous and lots of bathroom trips so probably the rafaxamin. I want to stick it out for two more days at least get five days on it to kill any bugs I might have. My butt is raw from pooping. Rafaxamin is not supposed to be absorbed that much I thought so few side effects? I see my antibiotics guru tomorrow (my lymes doctor) he knows a ton about them. Maybe he will have helpful suggestions.
Posted 9/22/2015 4:08 PM (GMT 0)
i rarely post ont his forum, but this one caught my eye- my 12 year-old daughter (w/Crohns) just started Rifaximin about a month ago, & is doing awesome. She takes Pentasa & Rifaximin now, used to be Pentasa & Flagyl. Flagyl is tough to handle, used to cause stomach pain & loose stools. Hoping the Rifaximin is a wonder drug for her- it can be taken long-term, which is our plan at the moment.
Posted 9/22/2015 8:28 PM (GMT 0)
How much rafaxamin Eva Lou?
Posted 9/22/2015 9:26 PM (GMT 0)
gumby - I hope the cipro works. I feel convinced I have something going on with me, but I don't want to go on antibiotics unless an infection is found. Still waiting on my blood/stool tests - I'll have to chase my hospital up for those, which I hate doing.
Posted 9/22/2015 11:07 PM (GMT 0)
Thanks for everyone's responses. I've been pretty grouchy about having to deal with this. I feel like I'm working in the dark. The Cipro seems to maybe be helping.....we'll see.

NCOT- let me know what you find out from your blood/stool tests. I tried to stick it out after all my tests were normal, but I felt like I was getting progressively worse. So here is something I'm pondering.....I get it that when you have Crohn's inflammation, you are more likely to have bacterial imbalances, but if I'm in remission, then why would that be the case? Maybe just the re-section and lack of ileo-cecal valve? I don't quite know what to think. Oh well, I hope you either feel better or at least get better answers than I was able to find out.
Posted 9/23/2015 12:23 AM (GMT 0)
Rifaximin 550 twice per day was a life saver for me during my last flare up. It was with its help that I could tolerate being on Entocort 3mg (remember I'm steroid -dependent ) and managed to reduce my bms from 8 to 2 or 3.
I was told I have to stay on it long-term. However, in my last visit to my GI, I was told to stop it for two weeks and resume it again after two weeks and see how things will go on. The same applies to the probiotic I take. But as I'm always lucky after only 5 days of the break, I started having soreness in my abdomen again which antispasmodics couldn't control and symptoms changed to severe c and my proctitis is acting up. So, I started taking it again. I think cramps have slowed down but I 'm still constipated. This might be to my proctitis.
Gumby, were you started off at rifaximin 200 or 550? The 200 mg dose usually caused me nausea and d. The 550 mg one is different.
Take care :)
Posted 9/23/2015 12:03 PM (GMT 0)
Daughter is taking 200mgs 2x a day, so total 400 mgs per day. That is a pediatric dose- she's almost 13, weighs about 86 lbs. Yeah, we both have been very pleased with the results- when her GI suggested it, of course I did some digging on the internet ASAP- found a lot of ppl. w/Crohns who have have success with it. Good luck!!!
Posted 9/23/2015 1:14 PM (GMT 0)
Minnie--I was on the 550 dose, but I switched to Cipro, and I think it might be helping but still having issues. We'll see I guess. Thanks everyone for your responses and support.
Posted 9/23/2015 1:58 PM (GMT 0)
Gumby - Surgery will alter the bacterial load in the gut. In fact abdominal surgery just about increases the risk for everything - SIBO, stricture, abscess, fistula, etc. Most of them are, I think, short term risks, but I'm not sure about SIBO. I don't think doctors themselves really know much about this kind of stuff. It's a mystery why some people have good outcomes after surgery and other people bad ones.

Sorry, that hasn't helped a lot, I know... :-/
Posted 9/23/2015 5:33 PM (GMT 0)
You may have D at first, but give it a week. It is famous for causing constipation. It may get hard to deal with the constipation but stick it out if you can. It is not a broad spectrum antibiotic, and it is supposed to remain inside your intestines. It mainly targets e.coli, and is not supposed to kill good bacteria although who knows what all it actually kills… I have read about it being used for C.Diff, but on the manufacturer’s website it says it may cause C.Diff.

It also has some anti inflammatory properties which could be what many people find beneficial about it.

It most certainly is crazy expensive though. There is a coupon on the website that may help you. Read the fine print though.


/www.xifaxan.com/
Posted 9/24/2015 12:39 AM (GMT 0)
Thanks NCOT and Homeboy,
Maybe I should have stuck with the Xifaxin, but I had to go to work and the D was out of control. I switched to Cipro and seem to be doing better. I strongly suspect food poisoning but my stool tests were all negative, so I really don't know what happened. Hopefully I can get past this until my next GI adventure. I really and truly "hate my guts!!"
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