# Day 1 of Xifaxan and I am miserable



## SKW (Mar 17, 2014)

Have worked with 6 different GI doctors and have exhausted all the options. I am now trying Xifaxan for the second time. I tried it a year and a half ago, and lasted 3 days as I felt it made my bloating/distension worse. This time I am determined to finish the entire course.

HOWEVER - today was day 1 and I again feel like its making me worse. This week has been somewhat of a flare up in that my symptoms have been worse than usual, but the bloating/distension was still manageable. I could still leave the house and do things.

Today, as soon as I took the first pill, I blew up like a balloon. I have had lower ab bloating all week from cheating/going off Fodmaps at a BBQ last Sunday (I ate guacamole and half a burger patty and I have been paying for it - never again). But now my entire abdomen is bloated - upper and lower. The pressure is unbearable. It feels like there is a giant air balloon pushing against the insides of my stomach. It is hard and round and so uncomfortable.

Is this normal? I had really high hopes that Xifaxan would help this time around. All the doctors I've asked have said that it should NOT make my symptoms worse - it'll either help, or have no effect. But I feel pretty f*ing miserable right now and I'm sick of this. I don't see how I can go into work Monday feeling like this. I look 7 months pregnant.

Please help - has anyone else had Xifaxan make them feel worse before feeling better?


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## Nojokeibs (Apr 14, 2014)

SKW said:


> Have worked with 6 different GI doctors and have exhausted all the options. I am now trying Xifaxan for the second time. I tried it a year and a half ago, and lasted 3 days as I felt it made my bloating/distension worse. This time I am determined to finish the entire course.
> 
> HOWEVER - today was day 1 and I again feel like its making me worse. This week has been somewhat of a flare up in that my symptoms have been worse than usual, but the bloating/distension was still manageable. I could still leave the house and do things.
> 
> ...


Any doctor that told you that it shouldn't have gas/bloat effects is severely mis-informed or deliberately lying (any time a doctor uses the word "should" a little red flag goes up in my head... does he actually know, or is that a guess?). Just look up the drug on rxlist to get the full info on the drug (13 pages of info), and it will be obvious that this is a common side effect. This drug specifically targets E. coli bacteria, which might be a problem for some people, but only you would know if it's a problem for you. Did they say that was the problem? How did they determine that?

Suggestion: If you're determined to continue with this program, then I'd say, cut your dose in half, clear your bowels completely with magnesium citrate, and fast, yes total abstinence from all food, during the treatment (just drink water, tea, coffee, cheat with broth and/or coconut oil but only if you MUST because bacteria can work on cheats). Otherwise you're going to have a gas bloat problem that's "unbearable" like you said. People can fast for a 10 day course of antibiotics. But when you're not eating, you might want to cut your med doses in half. On day 1 and 2 you will feel like a truck hit you, but after that, ketosis will kick in and you'll feel pretty ok, maybe a little achy, but at least not like a balloon about to burst.

Just goes to show what E coli are doing... they're absorbing that gas for you... the other bacteria are making the gas, the E coli are absorbing it, but now they're dying off... so your body has to slowly absorb it into your bloodstream so you can breathe it out. I think this may prove you have SIBO, because if it was in your colon, you'd probably just fart it out. If it's up higher, it tends to get stuck, for me anyway.

What do the doctors say now that you obviously have symptoms from the treatment? Do they say continue? Or stop? Probably a good time to check in. Show them responses to your questions in this thread and anywhere else, so they know you're trying to get answers, and they know you're serious about finding help. I know it sounds funny, but doctors sometimes think you're just there to get attention and need to be reminded that you're really looking for an answer. Reason I say that is the "exhausted all options" comment. What about writing to the FDA about prucalopride? Those letters are way more powerful if your doctor and you write together (assuming it's a good treatment for you).

I hope you find something that works for you, keep us posted.


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## SKW (Mar 17, 2014)

I've been calling my doctor's office this morning trying to get in touch with him. I haven't been able to speak with him but will keep you posted on what he suggests.

I was reading online a lot yesterday about Xifaxan and many people said they saw symptom IMPROVEMENT after a day or two. I read a lot of testimonials on this forum and others where people noticed improvement within a day OR felt nothing - but could not find many testimonials where they felt worse. I felt worse immediately after taking the first pill and have been bloated like a balloon ever since. It does not go away at night. I do feel more gas rumbling and have been releasing some gas but the bloating is not going away.

Re: your comment on fasting - doesn't the bacteria need food to feed off? Doesn't the antibiotic only work to kill bacteria when its feeding?


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## Nojokeibs (Apr 14, 2014)

Actually fasting will put the bacteria into a dormant state, but I doubt it will make the medication not work. Most meds work twice as well if you're fasting. The dosages assume there is food getting in the way of absorption. It takes about 5-7 days to put the bacteria into a dormant state anyway (in my personal observation of my body, based on what happens if I drink a bit of kefir - ie. do I get a reaction or not). By the time they became dormant, you'd almost be done. So I'm not sure it's a relevant worry. Rxlist would have more information about how the drug works, but if not, Pubmed would be the next place I'd research the drug's mechanism. Can't tell you off the top of my head, so I suggest you research it as best you can and ask the doctor if you are concerned. They are the expert on drugs, and mechanisms, or if not, a pharmacist should be able to help if the pubmed/rxlist stuff is gibberish to you.

I'm better on fasting probably because I do it a lot. I've had to learn how because it's one of the few ways I can manage my bowels. I'm not sure it's for everyone and I only mentioned it because you were so determined to stay on the drug. Seems like the germs are producing gas from food and if the food wasn't there, less gas, or no gas... and you can complete the course of antibiotics as you are determined to do. At least you'd know if that antibiotic did or did not help you once and for all. But I agree that if that's the only reason you're fasting, it's kind of an extreme measure.


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## SKW (Mar 17, 2014)

I finally had someone from the doc office call me back. The nurse relayed that the doc basically had nothing helpful to say except that Xifaxan should not be causing bloating. He said it must be from something else. How can he say that when my symptoms started IMMEDIATELY after taking the first pill? I get bloating all the time, but I can tell the difference - there is added pressure here, and it is much worse, and it does not go down after a bowel movement and/or a night's rest, whereas my normal daily bloating usually does.

Anyway, he ordered a CT scan, which I now have to go do on Wednesday morning. He said to continue taking the pills till then so they can see my stomach with the bloating. I am sick of having to deal with all of this. I couldn't go to work today and don't see how I can go to work tomorrow.


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## rita41 (Oct 8, 2012)

My goodness I can just imagine how horrible this must be. I just have the normal bloating n even that feels terrible. Bless you I really hope you get things sorted out after your scan. Good luck ....


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## SKW (Mar 17, 2014)

i have been laying on my couch the last 24 hours because the bloating is so uncomfortable. even today i went to the bathroom slightly more than usual and the bloating did not subside at all. i don't know what to do my entire abdomen area is swollen.


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## SKW (Mar 17, 2014)

My doctor is a moron. The CT scan came back and all they said (mind you, I have not spoken directly with him once through all this, but with his assistant) was that it showed I was constipated.

Weirdly, I was going to the bathroom more than usual on the Xifaxan (and without laxatives - I am trying to wean off as they're giving me side effects) but the bloating was 10x worse than usual bloating. What does that mean?

His assistant then tried to reason that I was bloated because I did not take Xifaxan with a probiotic, which is what she claimed the doc wanted me to do. When I spoke with the doctor himself a few weeks ago, he told me NOT to take a probiotic during it, but rather after. When I picked up the Xifaxan last week, I double checked wit hthe nurse and she read his instructions which clearly said to take Florastor AFTER the Xifaxan.

so it sounds like they have no idea how to explain my case, and are trying to make up excuses.

Does anyone have any explanation for why my bloating might have been WORSE even though my bowel movements were more regular?


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## Nojokeibs (Apr 14, 2014)

SKW said:


> My doctor is a moron. The CT scan came back and all they said (mind you, I have not spoken directly with him once through all this, but with his assistant) was that it showed I was constipated.
> 
> Weirdly, I was going to the bathroom more than usual on the Xifaxan (and without laxatives - I am trying to wean off as they're giving me side effects) but the bloating was 10x worse than usual bloating. What does that mean?
> 
> ...


Yep, sounds like typical bungling. But insist on talking to the doctor and it should be clarified at least on the point of probiotics. I can't imagine he wants you to take something that kills bacteria at the same time as a probiotic. I personally think the nurse had it wrong.

As for the why you're going more often, I'd say that's a normal gut reaction to the bloat. Be thankful that at least this works normally... if you have more distension, you will have more BM's, normally, that is. Abnormal people will just hold on to the gas until their bloodstream absorbs it. Thankfully, your nerves are firing correctly, at least in the overall scheme of things. There could be local spasms or inertia, but a CT scan can't show that unless there's an obvious narrowing somewhere.

Explaining the bloat would require culturing your stool and identifying the bacteria that are surviving the antibiotic. At least I think that's the only way to know exactly why it's happening. If there's some other way to tell, I'd like to know too.

I know this is a hard time for you, and I hope it gets better once it's over. In principle, a flora restart is a good idea, though it can be painful, as is clear from your experience. Thanks for sharing with us.

While you're talking to the doctor, you might get his opinion on taking a cathartic like magnesium citrate to get a clear out while this is going on. If you're "constipated" then something like that is technically indicated. Once, not daily or anything.


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## PD85 (Aug 19, 2010)

The first couple days on Xifaxan were the most gas I've ever had in my life. After that I was back to my normal IBS.

I would say it is absolutely normal that you are having bloating.


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