# Antibiotics Support Group



## theOcean

This group is open to anyone who has questions/concerns about antibiotics, or who simply wants to share their experiences with them here. 

This first post will also be edited in the future to include brief summaries of some of the more common antibiotics used for IBD and their potential side-effects and what to look out for.

*Ciprofloxacin* ( Cipro, Neofloxin, Ciloxan )

*Dietary Interactions*: 


Dairy
Calcium
Antacids
Magnesium
Aluminum
Iron

Do not drink alcohol while using this medication.

*Administration*:

Cipro can be either injected subcutaneously, given by IV, or taken orally. Do not take with food. Drink lots of water while on this medication.

*Potential Side-Effects*:

List here. Some people experience constipation while taking this medication. Taking this medication while immunosuppressed also opens you up to infections and you must keep an eye out for them. For women: watch out for yeast infections and get an anti-fungal as soon as possible if you do.


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## theOcean

So, the main post for this support group is obviously still a work in progress, but I think it's a good idea to get an antibiotic support group going!

I think my worst antibiotic experience was with Cipro and Flagyl, from when I was first dealing with my fistula. I think I was luckier than most people with them, but man, those antibiotics were terrible. I got a bunch of infections while on them, which was super frustrating when all I wanted to do was get better, not get more bogged down.  They definitely did wonders for my fistula, though.

How about everyone else? How've your IBD antibiotic experiences been?


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## DustyKat

Matt was on antibiotics for 6 months. 

Augmentin Duo Forte was a 3 month stint due to an intra abdominal abscess. He was on it pre operatively to keep the abscess at bay, he also had a pigtail drain in for the same length of time. He did not appear to have any side effects from this antibiotic and it did do its job well as evidenced by no further issues with the abscess. 

Flagyl was a 6 month course, 3 months pre op at 400mg three times a day and 3 months post op at 200mg three times a day. Pre op was a treatment for the flare and I have to assume that along with his other meds kept his stable. The 3 months post op was due to the Crohn’s specialists belief in the studies that show 3 months of Flagyl post op increases the chances of maintaining a longer remission. Matt has been in remission since his surgery 3 years ago but then my daughter has also been in remission since her surgery nearly 8 years ago and she did not have the Flagyl therapy. So who knows! 

Matt did not appear to have any adverse effects from the Flagyl either. He did much prefer the brand Flagyl over the generic Metronidazole due to finish of the tablets and he did not complain of the taste side effects that many people experience. 

Dusty.


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## theOcean

That's great that he had such a good experience with the Augmentin Duo Forte!

And that's wonderful that both of your kids are in remission.  It's always nice to hear.

And now I'm wondering if I ended up getting the generic Flagyl back then, too! I remember they had the most awful taste to them at 250mg. I remember asking my GI if I could be bumped back up to 500mg purely so I didn't have to deal with it anymore. (Although he said no, anyway, haha.)


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## DustyKat

Thanks.  

It may be that the 250mg was the generic. The generic has a powdery finish to the tablet, so no doubt that doesn’t that help!


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## theOcean

Yep, that sounds about right. 

Has anyone here had experience being on antibiotics while on a biologic? I remember when I first started Remicade, I was terrified of going on antibiotics at the same time and thought I would need to miss infusions if I was on them.

But instead, I never encountered any problems being on them simultaneously. In fact, when I developed my fistula I was _supposed_ to be on antibiotics while using a biologic. So where does the idea that we're not supposed to use them at the same time come from?


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## nogutsnoglory

I have never had any success with antibiotics for general crohns flares, abscesses or fistulas. 

I have been on many antibiotics but the ones of IBD interest include cipro, flagyl and clarithromycin. I wish i could say they helped me but I never found them to make a difference.


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## theOcean

I'm sorry to hear that, NGNG.  I didn't realize you'd had experience with fistulas.

Part of me wonders how much of a difference the antibiotics made with treating my fistula. I think it definitely helped at first, but once I got taken off of them in December I really didn't notice any transition at all, which makes me think it may have been all my Humira, instead. Especially since I found -- comparatively -- that Remicade stopped making any difference at all re: drainage within a few infusions.


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## Jay Woodman

Soon starting Isoniazid(INH) for treatment of latent TB. Tuberculin Skin Test(TST) resulted in an induration of 22 mm. Understand from my review of Humira that latent TB should be treated prior to starting a biologic. Interesting, though, my Infectious Disease Specialist indicates that his algorithm calculated only a 2% risk for me developing TB while on Humira.
He wasn't strongly recommending INH treatment. I indicated I would prefer to accept the risks of INH versus the risk of untreated latent TB while on Humira.


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## theOcean

Still, it's better to be safe about it. Good luck on the antibiotic and I hope it treats you well, as well as the Humira!


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## nogutsnoglory

Has anyone tried rifaximin? That's supposed to be the other antibiotic for crohns but not widely used. I never tried that one.
http://www.crohnsforum.com/wiki/Xifaxan-Rifaximin


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## Jay Woodman

I was recently prescribed a combination of Ciprofloxacin & Metronidazole both at 1000mg a day for a combined daily cocktail of 2000mg.  These were prescribed for my third perianal abscess since 2012. The challenge was this perianal abscess would not present. It remained dormant for a few months. I think the existing setons in the anal canal from two other previous abscesses and now double tract fistulas were perhaps alleviating some drainage from the new abscess via a new sinus tract.  The GI prescribed CiproMetro for a 14 day course to try to attempt to resolve the abscess. Another 14 day course was prescribed when the abscess failed to present. I did not continue with the back to back  additional 14 day course. The abscess did ultimately present & I had an Incision and Drainage at Emergency about 5 weeks ago. 

The CiproMetro at 1000 mg daily each caused nausea, diarrhea and loss of appetite. I found them challenging for 14 days. I was prescribed a smaller dosage of the Metro with an increased frequency this did seem to alleviate some of the nausea but not diarrhea.


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## theOcean

Jeanette Woodman said:


> I was recently prescribed a combination of Ciprofloxacin & Metronidazole both at 1000mg a day for a combined daily cocktail of 2000mg.  These were prescribed for my third perianal abscess since 2012. The challenge was this perianal abscess would not present. It remained dormant for a few months. I think the existing setons in the anal canal from two other previous abscesses and now double tract fistulas were perhaps alleviating some drainage from the new abscess via a new sinus tract.  The GI prescribed CiproMetro for a 14 day course to try to attempt to resolve the abscess. Another 14 day course was prescribed when the abscess failed to present. I did not continue with the back to back  additional 14 day course. The abscess did ultimately present & I had an Incision and Drainage at Emergency about 5 weeks ago.
> 
> The CiproMetro at 1000 mg daily each caused nausea, diarrhea and loss of appetite. I found them challenging for 14 days. I was prescribed a smaller dosage of the Metro with an increased frequency this did seem to alleviate some of the nausea but not diarrhea.


I had the same amount of Cipro/Flagyl (Metro is commonly referred to as Flagyl) prescribed. For me it just ended up causing really bad nausea... but only if I took it after I first woke up. I found that taking it at night was usually fine because I had already eaten and had something in my stomach. But when I took it earlier I had to take zantac or an anti-emetic beforehand, otherwise I would just end up getting sick.

Flagyl can cause diarrhea in a lot of people, with Cipro tending to cause constipation. So it's not surprising that was an issue for you.


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## theOcean

nogutsnoglory said:


> Has anyone tried rifaximin? That's supposed to be the other antibiotic for crohns but not widely used. I never tried that one.
> http://www.crohnsforum.com/wiki/Xifaxan-Rifaximin


Tagging just in case she might have some input, but I saw Stardust_Fiddle on the forum was taking it!


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## malmer7

Thanks for starting this thread.  Someone mentioned antibiotics WITH biologics.  I'll have my 3rd remicade infusion next week and have not gotten much better (maybe just a touch better).  My doctor has not even mentioned the idea of adding an antibiotic to treat my UC.  At what point do I bring that up to him as an option if the remicade continues not to work..?  Any thoughts?


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## Tuff

I got peripheral neuropathy from Flagyl 3 years ago. My feet are still numb and tingly. The docs say it may eventually wear off by itself. At least my fingers got better. I'm still on Cipro 3 1/2 years later. Hopefully if Remi does the trick, I'll be able to get off the rest of my meds.


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## theOcean

malmer7 said:


> Thanks for starting this thread.  Someone mentioned antibiotics WITH biologics.  I'll have my 3rd remicade infusion next week and have not gotten much better (maybe just a touch better).  My doctor has not even mentioned the idea of adding an antibiotic to treat my UC.  At what point do I bring that up to him as an option if the remicade continues not to work..?  Any thoughts?


I've heard of people going on Cipro/Flagyl to treat it, but otherwise I think I would consider an immunosuppressant + biologic combination first. I was on Imuran/Remicade and Imuran/Humira. If you brought that up, you could also ask your GI about an antibiotic + biologic combination, too, and see what they say.


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## theOcean

Tuff said:


> I got peripheral neuropathy from Flagyl 3 years ago. My feet are still numb and tingly. The docs say it may eventually wear off by itself. At least my fingers got better. I'm still on Cipro 3 1/2 years later. Hopefully if Remi does the trick, I'll be able to get off the rest of my meds.


I really hope Remicade helps! I remember hearing about those potential side-effects with I was on Cipro/Flagyl. I hope that you recover in your feet, too.


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## Stardust_Fiddle

Just realized that I was tagged in this post; sorry, I'm still getting the hang of this forum! :eek2: I take Xifaxan daily every other week for small intestinal bacterial overgrowth. It has been beneficial, but I still have symptoms. The downside, of course, is that I have to keep taking it all the time or the bacterial overgrowth will get out of hand again. I'm not familiar with Xifaxan's use in anything other than SIBO; is that why you were considering taking it?


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## SupportiveMom

Has anyone tried this 4 antibiotics cocktail penicillin, flagyl and 2 others? We are trying Simponi 1st, the this antibiotic treatment. I am not finding anything on it. Anyone heard of it?


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## lisadc1

Being sick the entire month of August, I have now been on four antibiotics while on Humira. I was first taking amoxicillin. Then, Cipro/Flagyl combo for my recent problems, as well as rocephen (sp) for the kidney stone & UTI. Took another Humira injection today...is there a specific reason antibiotics shouldn't be taken while on Humira???


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## SupportiveMom

What I am talking about is a treatment strategy. You take all 4 of these antibiotics at once as a form of treatment. As far as I know there is no problem taking an antibiotic while on Humira.


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## leezapeza

Hi guys I'm on metronidazole for 3 months my GI us using it to treat the Crohn's I had a small bowel resection they took the end of my colon and I had a wedge resection of meckels diviticulum that was nearly 4 weeks ago I'm going in to azatriapane when I see my GI in march


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## Mommeran

malmer7 said:


> Thanks for starting this thread.  Someone mentioned antibiotics WITH biologics.  I'll have my 3rd remicade infusion next week and have not gotten much better (maybe just a touch better).  My doctor has not even mentioned the idea of adding an antibiotic to treat my UC.  At what point do I bring that up to him as an option if the remicade continues not to work..?  Any thoughts?


If you see other Crohn's patients having success with a medication, yes, definitely discuss it with your doctor. If they disregard it, consider getting other opinions. My 25 year old son passed away this fall from complications due to Crohn's. His doctor sent him to the lead Gastro specialist in Portland Oregon.Today they are changing their early intervention practice due to the death of my son. Your doing the right thing by reading this forum. I hope the remicade is working for you now and your doing better. Hugs


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## k_stewart

Has anyone heard of taking tetracycline for Crohns?  I only see things about Crohn's starting due to that med.  I'm not sure I want to take it.  I am also on Remicade.


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## subtlevibrations

I'm currently taking Metronidazole 500s and I've got the nasty taste side effect, and Jolly Rancher candies are pretty much the bees knees right now. They're also relatively low in sugar for being so potent. I just thought I'd share this~


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## leezapeza

subtlevibrations said:


> I'm currently taking Metronidazole 500s and I've got the nasty taste side effect, and Jolly Rancher candies are pretty much the bees knees right now. They're also relatively low in sugar for being so potent. I just thought I'd share this~


I'm on the 400 dose do you get thrush with it ?


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## subtlevibrations

leezapeza said:


> I'm on the 400 dose do you get thrush with it ?


Well, I'm not sure. This is my first time with it, but I do have change in taste and a coating on my tongue, but I'm not sure if that fits the bill. The coating is a light brownish colour; I thought it might just be a sign of ama due to the dramatic change in my diet (I was living on mostly rice, legumes/lentils, and cooked greens for a while now). 
But if it is thrush, it sounds like eating Jolly Ranchers is probably just going to make it worse because it's high in sugar, right?


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## leezapeza

Yeah I think so too anything with sugar isn't good I feel really good I don't have the itch like a thrush just the discharge


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## Steveyank

Hi. I've taken rifaxamin and it really does work wonders. I've taken 3 two week courses of it over the past year. The problem is the gas and bloating comes back after you stop taking it. But it's not as harmful to take as flagyl or cipro.


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## Crohn2357

Antibiotics work wonderful for me. Unfortunately I get tendon problems with cipro and developed allergy to metronidazole. Rifaximin makes me much worse. Only remaining antibiotic that helps is clarithromycin. I asked my gi if there is any antibiotic that is safe and effective for crohn's disease and he said no, there are no abx other than cipro, metronidazole, rifaximin and clarithromycin. I think he is probably right.


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## Ann Morgan

theOcean said:


> I had the same amount of Cipro/Flagyl (Metro is commonly referred to as Flagyl) prescribed. For me it just ended up causing really bad nausea... but only if I took it after I first woke up. I found that taking it at night was usually fine because I had already eaten and had something in my stomach. But when I took it earlier I had to take zantac or an anti-emetic beforehand, otherwise I would just end up getting sick.
> 
> Flagyl can cause diarrhea in a lot of people, with Cipro tending to cause constipation. So it's not surprising that was an issue for you.


I was diagnosed with C-diff on April 1st of this year. My PCP prescribed me the generic of Flagyl until I could see my new Gastroenterologist a week later. I took it for six days and had diarrhea every day and I stayed home. Terrible. When I saw my Gastroenterologist I was prescribed Vancomycin.


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## Ann Morgan

I am still trying to figure out how one antibiotic probably caused my C-diff and then I was taking another antibiotic to help me get rid of the C-diff. Last November I was blowing my nose and I noticed green snot. I had never had green snot and I figured this meant infection. My PCP gave me antibiotics for it. He knows I have UC, so why would he give me antibiotics if he knew I had the UC ?  Also, would something like green snot just go away on its own without antibiotics. I am going to be very, very careful from now on if any doctor is going to try to give me antibiotics. I did not know until recently that certain antibiotics can cause C-diff. And I did not know what C-diff was until this year either . I don't think my Vancomycin got rid of my C-diff. My doctor did not have me re-tested after my Vancomycin treatment was completed. I finished the Vancomycin on April 29th. I have not been doing well at all with my symptoms since completing my treatment. I am going to give myself a week or two to see if my symptoms are still bad. Then I will see my Gastroenterologist again to get a C-diff stool sample test again. I am so tired of playing the doctor game.


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## Ann Morgan

What are biologics


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## nogutsnoglory

Ann Morgan said:


> What are biologics


They are a different class of medications that work to stop certain mechanisms in the body. Examples being humira, remicade and Cimzia which suppress production of TNF, believed to be causing an unnecessary inflammatory process. They are not antibiotics and come as injections or iv as of right now.


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## Ann Morgan

Thanks. I will do more research on the Internet.  : - )


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## guest19

Steveyank ... would like to know more about your experience on Xifaxin.  I am at my wits end as I am certain what my issues are is SIBO, but I never show on any tests (which is true of a lot of things for me).  I have always felt enormously better whenever I needed antibiotics.  My GI is leary of prescribing anything long term.  He'll only give me amox about twice a year if I beg.
I can tell I am in some sort of infection now...I get burning hot right before and after a BM, the stink is very strong and makes hubby run from the area!, and I feel blech in general.  [sorry if TMI] Just getting over a cold which also tends to be when this kicks up.
So are you on xifaxin in bursts or continuous?  Any c diff issues, any other downsides other than I know it is expensive (but I am fortunate to have good insurance).


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## irishgal

I'm on clarithromycin, rifampin and was on levofloxicin until I got bad neuropathy and had to discontinue. I replaced it with low dose naltrexone. Anti-MAP therapy has done wonders for me. Yes, docs are hesitant to prescribe, and CDiff is a risk, but antiTNFs carry a load of risk as well, and they never worked half as well as AMAT. Integrative health docs will generally consider it as your GI probably won't. Flagyl worked wonders for me, which is why I thout this therapy would work. Lots of other info on AMAT on TheCrohnsInfection.org. Be well friends!


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## JackG

Almost a year since the last post above, irishgal, are you still doing well on anti-MAP therapy? I'm just coming into the MAP discussion and don't know much about it. Would it be worth talking to my GI about, and are docs getting more likely to prescribe? The Humira I'm on is working in that I'm surviving, but the extorted cost is preventing me from retiring, among other side effects like runaway psoriasis.


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## irishgal

JackG said:


> Almost a year since the last post above, irishgal, are you still doing well on anti-MAP therapy? I'm just coming into the MAP discussion and don't know much about it. Would it be worth talking to my GI about, and are docs getting more likely to prescribe? The Humira I'm on is working in that I'm surviving, but the extorted cost is preventing me from retiring, among other side effects like runaway psoriasis.


Hi Jack - yes, I'm still on the same AMAT protocol and doing very well. No CD symptoms and I have fully healed mucosa at this point (confirmed by a repeat colonoscopy in Dec. 2015.) I also sent a repeat human MAP test to John Atiken at Otakaro, and in contrast to my first test right before I started AMAT, there is almost no human MAP left in my blood. A small amount of persistors, but I will probably always have these since I've had CD for 25 years and the pathogen is really hard to totally eradicate. Overall, I've never felt better since I got CD decades ago. This treatment has literally saved my life.

As for talking to your GI, you can try but I haven't seen much movement in thought over the past year in the GI community. If anything, they seem to be getting more resistant! Maybe if you have a really good relationship with your GI you could broach the subject, but my guess is one of two things will happen: 1. They will have no idea what you're talking about and never have heard of this research or 2. They will know about it, and tell you that it's been disproven by the 2007 Selby study and even if you get past that, they'll tell you it's not an approved treatment pathway and they won't consider it. 

If you really want to talk to a doc about how this may help your case, you can PM me and I'll send you a list of docs that may discuss it in your area if I have any, or you could go to see Dr. Chamberlin in New Mexico who prescribes for patients, or you could search for an integrative health MD in your area and bring the research to them. They are generally more open minded, plus they come with the added benefit of being able to implement helpful dietary measures to boost your recovery. Dr. Chamberlin will talk to a local doc in your area about AMAT if you can get one to consider it and call him. Another strategy is to get human MAP blood test results from John Aitken in New Zealand by sending him a blood sample, then if you come out positive, take the results to an infectious disease doctor who could treat you for a mycobacterial infection, thereby helping your CD as well.

As for the Humira, it sounds like it may not be working well. Possibly time to talk to your doc about that and alter your treatment. It never worked well for me either, and really only works in about 30% of people, and then sometimes for a limited amount of time until the patient builds antibodies. If you want to continue it, I know they have copay assistance. Have you looked into that program? They covered the balance of the expense in my case, and I only had to pay $5 per cycle. I've heard the psoriasis is miserable. I had a different skin manifestation, and that it so tough. I've heard other patients talk about how difficult it is to deal with the psoriasis, and it really messes with quality of life. Certainly something to discuss with your doc, since there are treatments for that as well.

Overall, if I can help, let me know. I'm happy to. I hate seeing so many people suffer with this awful disease when different strategies may work. Take care!


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