Xifaxan for pouchitis

Xifaxin is a go-to drug for pouchitis I take in rotation with the other 2. Those are the "Big 3" antibiotic drugs used to combat pouchitis. Xifaxin has less side effects than cipro and flagyl due to it being poorly absorbed and mostly staying in your gut. Hence most side effects are usually gastrointestinal in nature.

I tolerate all 3 antibiotics very well (as well as augmentin and a number of others). I think Xifaxin is as effective as cipro and flagyl in controlling my pouchitis but it does need to be rotated or else it loses its effectiveness.

One thing I have noticed is that xifaxin does not thicken my stool as much as cipro and flagyl does.

I had wished Xifaxan worked for me, but it didn't. It definitely didn't have any side effects, but didn't really have any effects at all with me. Cipro and Augmentin were my go-to drugs until I found Pepto Bismol.

I suffer from SIBO. Xifacin never worked for me. I tried it 2 times. My insurance doesn't cover it anymore, most don't and it is really tough to get it approved according to Cleveland Clinic. I tried for the third time a few months ago but got denied. It is 1500 a month! Guy at CVS couldn't keep a straight face when asking how I wanted to pay for it.

if it works and you get it covered go for it. It is a better option.

My group health insurance coverage now is Anthem Blue Cross Blue Shield. They cover me for a 30 day supply of Xifaxin which is 60 550mg tablets (2 a day) for a $40 co-pay, which is the highest level of co-pay in Anthem's 3 tier co-pay system. It is more expensive than cipro or flagyl is, in terms of the co-pays I am paying.

Vanessavy, I feel very lucky to have health insurance and think all the time about what dead meat I am if I ever lose it. I would be in some deep doo doo. Although I have been able to rotate lactulose one week, antibiotics the next. Given the extreme cheapness of lactulose in comparison to the antibiotics, this lightens up the co-pay burden somewhat.

Xifaxan is soooo expensive so many Insurance companies are now saying you can only get it covered if ALL drugs have been exhausted and or you have Traveler's Diarrhea. 30 day supply was 1500 cash if I wanted it.

I didn't appeal like CC said I could, because the last 2 times it never worked, so I didn't want to exhaust myself for nothing.

Hi Again!

Thanks so much everyone for responding to me, this is so great. Ct, I too have Bluecross Blue Shield, therefore the Xifaxan wasn't breaking my bank thank God. Does anyone else feel that they have spasms and almost feel as if they have a constant urge to go to the bathroom. Does this just come with having the J Pouch surgery or is it a bad side effect of pouchitis? Ct you've had your JP pouch since 2012 any words of advice. I just need it to get better. I feel so young to even have to go through the surgery.

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Does anyone else feel that they have spasms and almost feel as if they have a constant urge to go to the bathroom.

Chrissey I have actually had a J Pouch since 1992 and I have been treating pouchitis with antibiotics since 1995. In those early years I had spasms like what you described and they were treated with anti-spasmodics like bentyl, levsin and donnatal, my personal favorite. My surgeon called it a spasmodic pouch. However over time it died down and the need to take anti-spasmodics diminished. My problem was constant bathroom trips and strong urges right after eating meals. Anti-spasmodics taken 45 minutes before meals completely resolved this problem. It is a very common problem in the time after takedown and it dies down or at least it did for me. Your body adjusts to the new alignment over time and peristalsis adjusts as well.

I took Xifaxan for pouchitis, but I don't really think it helped much.

What I can tell you is that the last antibiotic I took for pouchitis was erythromycin. I stopped taking it in early February and have been free from pouchitis ever since. Prior to this, I was on antibiotics constantly for years.

Antibiotics don't have to be your "last hope" for chronic pouchitis. Entocort, Immuran, and biologics can be options as well.

Just putting that out there because failing antibiotics for pouchitis doesn't have to mean losing the pouch and going back to an ostomy. Find a good GI who either knows this or is willing to read about it if you are open to medical management before making the decision to go to perm ostomy.

JJA

Thank you so much for filling me in on that important information. I would hope I wouldn't be looking to go back to an ostomy this soon, it really has only been 3 months since the take down surgery. Do you have any recommendations for butt burn? Was this something that you had a problem with in the beginning? Not to be gross but i've been in so much pain, it seems the only thing that works is warm baths. I'm open to any other suggestions!

Thanks!

Hi Chrissey!
BB is the worst! I like calmoseptine cream, it cools it right down, however it is a bit messy! A little goes a long way I often use it before bed.
Kate

My GI is having trouble finding anything authoritative about dosing Xifaxan for pouchitis. Everything I've seen suggests that the dosing is mostly guesswork. Can anyone point to a legitimate source for the right dose? Thanks.

Hi Kate,

How easily did you find it was to get back into a normal routine post surgery? Did you have to fight with spasms and butt burn for a while? I'm getting kind of depressed because I thought by now I would be on the right track to going back to a somewhat normal life.

Hi Chrissey,
I was 23 when I had my takedown. I think it took around 6 months to a year to get in the groove. You will get the rhythm. It's a really hard process for young women to go through. I know it can't be easy for the guys either, we just have a lot going on in the area. If you ever want to private message me I would be happy to chat further about anything you would like. Despite the fact I am having a bit of trouble at the moment, I have done really well with the pouch. I have travelled, got my masters degree, married and hope to eventually have a baby I am really overall happy with it, but it was most definitely a bumpy road in the beginning. Hang in there, Kate

Hi Kate,

I would love to chat maybe something you say can help give me the hope I need that things will get better because right now i'm just so depressed. Wow, that is great to hear congrats on the marriage and degree! I don't know to private message is this something you do through this website or regular email? Thanks so much for offering to talk to me, I really need to speak to someone who understands. Friends are great but they really have no idea what it is like, same with family.

Hi Chrissey, you can email me at ksmarisa@gmail.com, I promise you, it will get better. It's only been a few months. It's very natural to feel depressed. Your body has been through so much, you are still healing. You will be a thriving young woman very soon,
Kate

Here is a link to Bo Shen's2011 research on pouchitis and xifaxin dosages. http://www.biomedcentral.com/1471-230X/8/26

Xifacan keeped me in a blissful remission for almost 3 years then it stopped working. I'm trying it again after a 4 year hiatus.

I've been a lurker for some time and decided to register today as there is a ton of great information from you fellow J-Pouchers! Anyway, my takedown was this past April at Mayo in Rochester and I had issues with strictures and pouchitis so I went through an additional procedure (again at Mayo) in May...which didn't help. The surgeon only dilated and then sent me home to self dilate (fun, I know). In June, I started to "back up" and ended up in the hospital here in Des Moines. That surgeon actually snipped scar tissue away and things started to get better.

Started having more issues with frequencies and urgencies so I was put on Flagyl and Cipro for almost three months until my hands and feet started going numb. Went off those three weeks ago and was put on Xifacan. This antibiotic hasn't helped at all so now the Dr. has me on prednisone (low dose for now) and just gave me Welchol to take. I have another scope this Friday to get some biopsies as he feels I have chronic pouchitis. He says if this doesn't work my Mayo surgeon will want to see me sometime in the next couple weeks to discuss options )including removing the J-Pouch and replacing with an M or W pouch. I've had nothing but issues since the removal and then takedown and it's getting to get pretty old. Sorry for the long post but I just needed to vent a bit and ask for any suggestions. Thanks in advance.

If the meds aren't working (though there are additional ones you could try - I'm currently on doxycycline), you may want to try diet adjustment (e.g. very low carb or low FODMAP). This can take a while to work, so give yourself six weeks or so if you're going to try it. It's better than another surgery, I think.