Long-term use of flagyl?

Crohn's Disease Forum

Help Support Crohn's Disease Forum:

Cookie

Cookie

Joined
Jan 7, 2009
Messages
709
Hi all,

I would just like to get anyone's thoughts/experience on this...

I had a second apponitment today with a surgeon for treatment of a persitant rectovaginal fistula(s).When I first saw her a month ago, she examined me and said that there were multiple fistulas but there was too much inflammation/ infection to determine a proper course of action. She sent me home with a month's supply of cipro and flagyl, as well as some steroid cream and suppositories. All of these things cleared away the inflammation quite nicely. So much so that, when I told her how well things were going, she said that she did not see any need to operate (she did not examine me) because it could just cause further problems. I am find with that. I myself would like to avoid any surgeries as well. However, I told her that I have been down this road before and as soon as I discontinue the flagyl/cipro, the infection returns. Her solution is to keep me on a low dose of flagyl (250mg as opposed to the 750mg I have been taking).

The thing is, I do not tolerate this medication well at all. Now I am not usually a complainer, but I have taken countless doses of this stuff and it causes me to have symptoms of severe fatigue, nausea and headaches. Sometimes I feel i would rather tolerate the fistula than take the flagyl. She told me that I will probably be able to tolerate the lower dose and that it is really the only option she sees right now. I have a six week supply and an appointment to return to see her in March. Aside from not wanting to take this medication, I am also worried about the long term use of an antibiotic. So I was just wondering if anybody had experience with flagy long-term and if there was any advice? Thanks much!
 
Recent research has indicated that long term use of some antibiotics which included Cipro, I didn't see Flagyl listed, can lead to problems with ligaments up to and including spontaneous snapping of any ligament itself. So one must be careful in long term use in my opinion.
 
Thanks for the info. Just to clarify, Pen, do you alternate between the Cipro and flagyl? For how long do you take each one and how much? I am worried about my body building a tolerance to the antibiotics. I have always taken these meds together but for some reason, always assumed that the side effects were coming from the flagyl (probably gave it a bad rap in my own mind due to the awful taste!) but it could just as well be the cipro. Guess I'll find out...
 
hey shady
ive been on cipro and flagyl for about 2 years i think. 1000 mg of cipro and 1125 mg of flagyl per day for fistulas and abcesses as well. one of the was rectovaginal for me too, fun fun.
never really had any side effects though, so sorry not much advice. only had a problem with being on IV flagyl for about 7 months i started having numbness in my toes and feet. once i stopped the iv the feeling slowly came back.
but they said it happens sometimes with the oral medication as well, so any tingly toes tell you doc!
good luck
 
Wow Kello. I never would have guessed that it would be safe or beneficial to take antibiotics for that long. And I am shocked that you take such a large dose. I guess if you can handle 1125mg/day, I can stop complaining about the 250mg that I have to take.

On a side note, I would like to mention what an inspiration it has been to read the stories and experiences of some of the people on this forum. Many of you are so young and have been through so much that I don't think most people can even begin to comprehend. Yet you are able maintain a positive attitude and that deserves a lot of recognition. I'm sure that everybody has their down days, but the fact that you are here, sharing your stories and giving advice to others is truly worthy of praise. Thanks to all for the inspiration!:)
 
I stayed on Flagyl (500 mg) for about one year with no side effect, till my GP told me I shouldn't be on it for this long so I stopped it. But when I asked my GI why he kept on it for this long , he said that at this low dose it's safe. Anyways after that I usually took a combination of Cipro and Flagyl for 10 days when I had flares....
 
I've been on lots of flagyl and cipro over the years. What I hate the worst is the two week treatment then stop cycle, get worse, start again, stop, get worst thing. I much preferred it in high school when my doctor just kept me on flagyl for about six months straight until the fistulas cleared up.

With my most recent bout of fistulas my surgeon/GI would use cipro/flagyl to make the condition bearable, but the surgeon said that my fistulas were so severe that treating them with flagyl was like shooting an elephant with a bb gun (or some metaphor like that), so they started me on remicaide (which didn't work) then an ileostomy (which is working :).

On the other hand, I never had negative side-effects from flagyl or cipro, so I didn't mind the long-term thing.
 
I have been having 250 mg of flagyl per day for years and I didn't have any side effect.

There is another antibiotic I am taking now, Rifaximin; It is supposed to be safer because it runs into the guts but does not pass to other parts of the body.

http://en.wikipedia.org/wiki/Rifaximin

I hope it helps, regards,

Sebastian
 
Flagyl (in combo with pred) is the only thing that keeps my life bearable at the moment. I can relate to the experience of being on antibiotics, coming off and feeling worse, going back on and being able to tolerate life etc. My GI has put me back on Flagyl and 40 mg pred for the next month to get me through my wedding day (in 3 weeks!!) then he wants me to come off the antibiotics to see if Humira has made any difference. If no improvements he wants me to have surgery (ileostomy) as he said that flagyl and pred are not long term solutions. I've had no serious side effects as yet but I also have concerns about the long term effects on your body of all these meds. It makes me feel better in the short term but I still have symptoms and wonder how much my body can take?
 
yay Good luck Amanda!! My wedding is supposed to be next year, but I have put it off so many times now who cares when it ends up being. lol
 
Thanks Jamie. I'm keeping my fingers crossed that all goes well on the day. Sorry to hear that you've had to postpone :( We are postponing our honeymoon. We were supposed to be going to Maui in April but have decided to go next year for our 1 yr anniversary. I hope you get better soon and will be able to start planning your big day. The wedding has been the only thing getting me through this by giving me something nice to look forward to.

Stay strong,
Amanda
 
I can sympathise with your problem my doc has recommended i take an antibiotic called tinizadole which is supposed to be very similar to metronizadole(flagyl) but less side effects, maybe it would be worth discussing with your doc,to see if it,s worth giving it a go. Pity we cant order new bums online!:lol:
 
drew_wymore said:
Recent research has indicated that long term use of some antibiotics which included Cipro, I didn't see Flagyl listed, can lead to problems with ligaments up to and including spontaneous snapping of any ligament itself. So one must be careful in long term use in my opinion.
Click to expand...
This is for cipro only...the class of medications called fluoroquinolones. Sorry to post so late...I'm a newbie.
 
I was on Cipro 1000mg / Flagyl 1500mg to help treat my fistula.

The Flagyl made me sick to my stomach and very sluggish.

My doc took me off Flagyl and kept the Cipro.

BAD MOVE!!!! DO NOT TAKE CIPRO ALONE!!!!

I developed a C.-Diff colon infection because the Cipro killed off all the good bacteria as well as the bad. The Flagyl holds off the C.-Diff and is used as treatment for it.

I had to do a two week cycle of Vancomycin 5ml x 4 times a day to clear it up.

I am back on the Cipro/Flagyl combo with half the dose of the Flagyl, so far no problems.

I also take Florastore and yogurt twice a day and have no antibiotic diarehea like I had before.

Good Luck to All.

Mike
Please be careful with antibiotics.
 
drew_wymore said:
Recent research has indicated that long term use of some antibiotics which included Cipro, I didn't see Flagyl listed, can lead to problems with ligaments up to and including spontaneous snapping of any ligament itself. So one must be careful in long term use in my opinion.
Click to expand...


This is not true for adults. The joint and ligamentous injury occur in infants/fetus when the mother takes cipro during her pregnancy. That is why this antibiotic is contraindicated in pregnancy (due to the negative effects on the child.)
 
crohnMD said:
This is not true for adults. The joint and ligamentous injury occur in infants/fetus when the mother takes cipro during her pregnancy. That is why this antibiotic is contraindicated in pregnancy (due to the negative effects on the child.)
Click to expand...

I assume you're not a real MD ;)

WARNING:
Fluoroquinolones, including CIPRO®, are associated with an increased risk of
tendinitis and tendon rupture in all ages. This risk is further increased in older
patients usually over 60 years of age, in patients taking corticosteroid drugs, and in
patients with kidney, heart or lung transplants (See WARNINGS).
Click to expand...

http://www.accessdata.fda.gov/drugsatfda_docs/appletter/2008/019537s068,019847s042ltr.pdf
 
Desperate for more Flagyl!

hi all! :)
female my age with crohns since her 20s, i was diag w ulcerative colitis (pan) in 2002. no firm poo since then, always diarrhea. upper gi, barium enema, 1 colonoscopy 2009 showed pan colitis. docs prescribed asacol & prednisone, tried asacol one x, made uc worse. never took prednisone. typical day: up 4-5 x @ night to poo, no deep REM sleep/no dreams, exhaustion all day/lay on couch fatigue, poo during day 15-20 x. bad abdominal/schtummy pains/bloated. on bad nights fever. hospitalized 5 days for peritonitis/hole in colon via MRI (1 doc wanted to remove colon/1 doc voted keep for 5 days rest & flagyl & complete bowel rest) felt great! almost no symptoms, except headaches & metallic taste from flagyl. just got another rx for flagyl, thank goodness!
 
question about the hole in your colon

Hi. I have a lot of similar symptoms you're experiencing. I'm trying to convince my doctor to run tests or do something. I have acid reflux really bad. I was wondering, do to the hole in your colon, have you noticed any bad smells that seem to be exhaled? I think something is seriously wrong with my stomach, but my doctor doesn't seem to think its urgent. My girlfriend says that I seem to be exhaling a foul odor from my nose. With all my stomach problems, I believe it is related. Thank you for a response.
 
I must take the record, having been on a flagyl and cipro regime non-stop for 8 years!!! but, it keeps it all under control and I do not take any other meds. When I complain to my doc that I worry about the long-term antibiotics, he sighs and says, "it works! It helps my crohns patients and keeps them out of surgery and off of harsher meds." I have fistula/abscess that recurs immediately if i stop the meds (i learned the hard and stupid way by trying to test it out alone).

I take 250 of flagyl and 500 cipro every day. i also heard you must take them together. my doc says that the risk of torn ligaments is miniscule and mostly only in the Achilles area i believe (Not all ligaments in the body).

I think your body will adjust. I felt way worse at the beginning, on 2000 mg a day. at this low dose, I feel fine. occasional tiredness, nausea etc. but is that meds or Crohns?
 
UPDATE! - As of February 2012 - Ended Flagyl (finger numbness/tingling was too scary!), now on SULFASALAZINE 500 mg tabs, 2 pills x 4 times a day (total 8 pills a day), and LOVE LOVE LOVE how they work! Back to normal weight, hardly go at all anymore! Sleeping great! And they are not expensive! So for all of you out there with UC, if you haven't tried this medication, please do! For me they work and are fabulous. God bless!!
 
And for SunnyDay, about the odor - ALL of this is indeed systematic (from my findings/personal experience)...in my opinion, it all has to do with an imbalance/overgrowth of bad bacteria/flora in our schtummies and entire system/body. For me the only thing that has worked besides using the flagyl (i.e. antibiotics) to control the bad buggies (i.e. odors etc) is the Sulfasalazine which I am now on, which seems to work by relieving the inflammation (though I seem to think now that, as it is based on a turmeric-like compound (sulfa), it also may have other natural antibiotic qualities (?)...I need to do some reasearch on this to be sure, but that's my initial 'gut' instinct. :)
 
And to Jobell - definitely ask your Doc if you can give sulfasalazine a try - I am not sure, but I think the risk of side effects might not be as high as for flagyl. But I do understand- if it ain't broke, don't fix it! Been there! :)
 
Hi
Just to let you know I have been on a long term low dose of various antibiotics due to having kidney disease for nearly 9 years now & have not had serious effects that would cause me to stop taking them.
The only real problem is my body eventually gets used to a certain type so I have to switch to another every 3 years or so.
Just ask what the alternative medication would be if this happened to you.
Hope the low dose suggested does the trick for you.
 
I have just finished a 3 month course supply and now I'm a week into a 3 month course of flagyl, I'm taking 400mg 3x daily, I'm finding I'm have some degree of tummy upset and diahorrea anyone any experience ? Just wondering if the side effects will lessen in a week or two. Cheers.
 
Hi Cookie - I found this web site just now while searching for information about long term use of flagyl.

It is prescribed for treatment of inflammation in the small bowel pouch I have which a surgeon created so I do not have to wear an ileostomy bag.

Nothing else seems to work for me, and two days ago a Dr. advised me to use a permanent 250mg tablet twice a day for the rest of my life!

After reading several posts on your thread I thought it might be helpful if I shared some information.

Three years ago my gastroenterologist recommended a permanent daily dosage of cipro - based upon research done at the Mayo Clinic. I suffered full thickness teares in tendons in my shoulder and archilles. My Dr. told me it is a very rare side effect, 1/100,000 have this. However flagyl does not cause this.

By the way, I have had an ileostomy for 50 years and am heading for my 76th birthday. So the "rest of my life" may not be 30 years, but whatever it is, I want to enjoy it to the utmost.

All the best, Stroke57
 
Our newspaper this am had an article about an athlete who suffered from Crohn's and had surgery to remove his colon and has an ileostomy. He still suffers from bouts of Crohn's and his Dr. prescribed medical marijuana in the edible variety. Since then he has regained his strength and weight and is in remission.

Anyone else on this thread is using this medicine?
 
I don't recall how long I was on it but I did experience some numbness in my hands but that is just my experience.

2
 
Stroke1957 said:
Our newspaper this am had an article about an athlete who suffered from Crohn's and had surgery to remove his colon and has an ileostomy. He still suffers from bouts of Crohn's and his Dr. prescribed medical marijuana in the edible variety. Since then he has regained his strength and weight and is in remission.

Anyone else on this thread is using this medicine?
Click to expand...

Cannabis is my life saver! It helps my pain and slows down my guts so I'm not in the washroom as often. It hasn't helped me acheive remission alone, but from what I have read, it can work in tandem and as a catalyst to help your meds work even better.
 
sillygirl said:
hi all! :)

female my age with crohns since her 20s, i was diag w ulcerative colitis (pan) in 2002. no firm poo since then, always diarrhea. upper gi, barium enema, 1 colonoscopy 2009 showed pan colitis. docs prescribed asacol & prednisone, tried asacol one x, made uc worse. never took prednisone. typical day: up 4-5 x @ night to poo, no deep REM sleep/no dreams, exhaustion all day/lay on couch fatigue, poo during day 15-20 x. bad abdominal/schtummy pains/bloated. on bad nights fever. hospitalized 5 days for peritonitis/hole in colon via MRI (1 doc wanted to remove colon/1 doc voted keep for 5 days rest & flagyl & complete bowel rest) felt great! almost no symptoms, except headaches & metallic taste from flagyl. just got another rx for flagyl, thank goodness!
Click to expand...



Are you still on flagyl. I'm going through this at the moment as seems to help my Crohn's
 
I had a similar experience to sillygirl, except I ended up having surgery, had an ileostomy, and then now have a J-pouch for UC. But what I want to emphasize is that Cipro and Flagyl worked for me, and had I been left on it, I don't believe I would have needed surgery. You see, I never had any GI problems before. Seriously, never. In about 3 weeks of diarrhea starting, I ended up in the hospital. They started me on Cipro and Flagyl. It worked and I was set to go home. Then they did a colonoscopy, said I had severe UC. My first stool culture to check if I had an infection was lost. My second one was done after I was already on antibiotics. It came back negative. They took me off the antibiotics after 6 days (after pain had already stopped) and instead put me on Prednisone. I went downhill almost immediately, the pain came back, and when I asked if I could be put back on the antibiotics, they said I was technically no longer their patient because they had already put in transfer orders to send me to another hospital because of my declining condition. I waited about 3 or 4 days for another bed and they stopped treating me altogether except to continue the steroids. It was all downhill from there and every other doctor assumed the antibiotics had already been tried and didn't work (even though I told them differently), and they all went with higher and higher doses of steroids. I got worse and worse, lost 50 pounds due to an undiagnosed SIBO in just 4 weeks, they found out I had a C. Diff AND CMV infection the whole time. But when I kept losing weight and couldn't gain it back, no matter how much I ate, they wanted to do surgery or Remicade. With my horrid response to the steroids, I opted not to do the Remicade and do surgery instead. Now it's a year later and I have the J-pouch. And after all this, they finally put me back on Cipro and Flagyl to treat the SIBO and I've been fine since. In fact, if I get off of it, I get pouchitis. And now my doctor is considering something other than Flagyl because of his concerns about it being administered long term (can cause peripheral neuropathy) even though I have always tolerated it extremely well and have had no problems.

Moral to the story: If antibiotics work, stay on them and NEVER and I mean NEVER let them put you on steroids. And if you do and it makes your condition worse, get off it immediately. This could have all been prevented if the doctors I had in the hospital listened.
 

Similar threads

Papantoine
Neglect?
Replies
2
Views
579
Bufford
Bufford
K
This has destroyed my life.
Replies
27
Views
3K
kephra
K
S
Suspected IBD but no one will say that
Replies
16
Views
3K
Maya142
Maya142
C
Exhaustion from 1st Stelara infusion
Replies
1
Views
2K
nate_87h
N
W
Bowel disease and inflammatory arthritis
Replies
2
Views
2K
whaleroad
W

Latest posts

Back
Top