Flagyl and FMT

[C2Difficult]

Hi all,

To sum up my story I was diagnosed with C. Diff January 8th of this year after having "D" since last May. I first thought it was stress, then IBS, then realized I couldn't live with it anymore and finally performed for the stool sample test and was told it would go away with 2 weeks of antibiotics (flagyl). I started taking the flagyl and felt better after only one day. Then hell broke lose, the antibiotics tore me apart. I finished the 2 week course and I was not back to normal. The D wasn't AS bad, but I was left with really bad gurgling and sometimes pain. When I do have D, it's urgent and multiple times a day on the bad days. There have been good days which I am grateful for, but I can't accept what's going on with my body. So here's some info/tips for those going through this as well that I have came across and learned by my experience so far. It's been a few months since I started researching, but I wish I knew all of this in the beginning.

First of all, STAY POSITIVE. Everyone says it, but it helps. Appreciate the little victories, like a good day where you have the energy to walk your dog. My motto is everything happens for a reason, let me tell you when this is over I will have a much stronger appreciation for all things around me. That for me is a personal gain even if I have to go through some shit (pun intended) to realize what I have. And it will be over, for me and for everyone else.

My case could be a lot worse, things could be a lot worse, but I still can't do the things I used to. I came across the FMT foundation. FMT stands for fecal microbiota transplant and it sounds disgusting but I would do it in a heartbeat. 90% success rate y'all. Read the success stories! This is my hope. It should be a first line of treatment but it's time consuming and there's not as much financial gain as prescribing antibiotics that can be up to thousands of dollars. So, only patients that relapse multiple times after taking antibiotics are eligible most of the time. So whether antibiotics are working for you or not, you have hope. Either the meds will fix you or you can do a little work and find a doctor who will perform the FMT for you. Visit the FMT foundation website to locate a doctor in your state who will perform the procedure. I found a doctor in my state who I visited yesterday and he is eager to show the FDA how beneficial FMTs are. Sadly I have to suffer 2 more weeks on flagyl before I am eligible for the quick fix procedure (I've read that people feel normal after just one day, how cool would that be?!?)

So, my two weeks start today. From prior experience, I know flagyl sucks but I'm trying some new tactics to make this round less miserable.

1. Flagyl tastes awful. I dreaded taking my pills, but I've come up with a brilliant technique. FRUIT ROLL UPS. Wrap the pill in a little bit of fruit roll up and you won't have the disgusting aftertaste lingering for the next few hours :)

2. Eat! Antibiotics tore up my stomach before because I had no food in it because I developed a fear/ loss of appetite due to the D. But it really helps to have something in your stomach. Take imodium if you have to.

3. Be consistent when taking your pills. The bottle says every 8 hours, so try to be as close to that as possible. This is important because the medicine will work best when its at consistent amounts in your body as opposed to switching from a lot to a little during different time periods. (I hope that makes since? Just follow directions!) Don't miss doses, don't stop taking it when you feel better. These pills are hell but take them properly and they should benefit you greatly in the end.

4. If you're feeling down, seek out support. This discussion board has done a lot for me. I messaged one user and was delighted to hear back from her with very insightful advice and encouragement. My friends and family have seen what I've gone through and they help a lot, but they don't fully get it. These people do and it seems to me that we all have common ground and want to get through this. I would love to be able to help anyone I can, so message me on here if you are in need of support :)

Not a lot but a little goes a long way!

For those of you who have had an FMT, can you share your experiences? Post FMT symptoms, benefits, anything? I'm hoping the flagyl works, but just in case I would love to hear about it!

[getwellsoon]

STANDARD INTRODUCTION: Welcome to the site. Read the first forum “All Users Read This First” and subtopics “Please Read before You Post” and “Guidelines for Posting to our Discussion Boards.” (Note limits on posting.) They will guide you in using the site and answer some frequent questions. Read Dr. Borody's article and topics in “CDI” including “Hygiene” “Nutrition,” “Testing,” and “The C. diff. Bible.”

“Doctors” lists doctors our posters have recommended and also a list of C. diff. specialists throughout the world. (Many perform FMT's.) Contact info. is provided.

The majority (about 80%) recover with one to two rounds of Flagyl or Vancocin. An unfortunate small percentage doesn’t and can suffer for months. Most recover unless there are factors such as advanced age or other severe health problems. New treatments include FMT's, which have a high cure rate, and Dificid. Other drugs and treatments are in the pipeline, and there is increased recognition of C. diff.

If antibiotics contributed to your C. diff, be careful about taking them again. (“CDI – Antibiotics”). Some people tolerate them; some develop C. diff again. (“Dr. Borody's article). Don’t take medications for C. diff. unless you are tested. (“CDI – Tests.”) The best protection (for you and others) is thorough hand washing and good hygiene.

For further information see http://www.peggyfoundation.org/, several other support groups on Facebook, the “Mayo Clinic” and “Web MD" web sites, and the FMT Foundation.

This is a support site not a medical site. We can’t give you medical advice but can tell you what worked for us and offer support. No one will understand what you are going through except someone who has/had this unpredictable disease. All of our moderators and frequent posters had/have C. diff. (or a loved one with it) and know how physically, mentally, and financially disabling it can be.

Again, welcome. Remember, the odds are in your favor.


You have given good info for a Cdiff sufferer. Welcome again and hope you do well with the Flagyl and the FMT. Carol

[amyc]

DO NOT take Imodium with active C diff unless your physician specifically tells you to do so. I will not take the stuff at all. If you have D that lasts over a few days, you must seek medical attention, not just take Imodium for a few weeks/months to see if it will just go away on its own.

[saraht]

Welcome to the site, and thank you for the input! I'm so sorry to hear you have been battling this beast along with the rest of us. C.diff was known to effect mainly older people, but anymore it's become a huge problem for all ages. Have you been on just Flagyl? I will say there are a good percentage of us that flagyl doesn't work for, but Vancomycin does. The first time I had c.diff at 23 I was on SEVERAL treatments of flagyl which I just relapsed over and over once I finished the meds. The first treatment of vanco, I was good to go. I wish it was that easy now. Plus flagyl has more side effects than vanco, and the percentage rate for flagyl to not help is on the rise.

I agree FMTs should be used more often, and something every GI should be doing, as well as know about, but I don't want anyone to feel that just because flagyl didn't work for them, doesn't mean Vancomycin or Dificid won't either. In fact a lot of Dr's who do the transplants require you to have done different methods of treatment before agreeing to go forward with the transplant. Some require a relapse on Dificid and or 1-2 Vanco tapers. It's sad that people like us have to relapse, and continue to suffer to get a FMT, but not everyone that has c.diff where flagyl doesn't work to rid the infection needs a transplant. I hope one day FMTs will be used as a go to treatment for the infection, but sadly right now there are drs out there who do not even know that exists. My PCP for example. The costs of antibiotics are high, I do wish vanco and dificid were cheaper. It's ridiculous they are so expensive, when they are what people need to live.

You are right, people need to educate themselves. Without this site, I don't know where I would be as far as this illness. I'm glad you joined the site, and are offering to help others as well. It can feel like a very lonely illness, but here no one is alone. Let us know how you do over the next couple weeks!! Prayers for you that things go smoothly and you can rid this beast once and for all!

-Sarah

[seekingcure]

Agree with Amy about the Imodium. It can be dangerous to take if you have active c-diff. Also agree with Sarah about the Vanco. I'm not sure what side effects you have from Flagyl but you stated it "tore me apart." If you have bad side effects from the Flagyl, ask to be switched to Vanco. It's a much easier drug to take. I had terrible side effects from Flagyl, but felt much better on Vanco. Often a single course of Vanco is all that it takes to cure someone after Flagyl has failed. You've always got the option of the FMT if the Vanco doesn't work.

If the Vanco capsules are too expensive with your insurance, ask the doctor to write the prescription for liquid. A compounding pharmacy can mix the IV powder into liquid form and it is much less expensive than the capsules.

Good luck and hope you feel better soon. Keep us posted.

[C2Difficult]

Wow thank you guys for such a quick response! I appreciate all of the support and I'm glad you've found this site to be as helpful as I have. I probably should have posted a disclaimer to follow doctors advice before taking mine, oops! But one of my GIs told me it was okay to take Imodium while on Flagyl, is that dangerous? And I had the option to take Vanco but it was super expensive and the specialist I visited was not in my area and I wasn't sure what pharmacists in my area could make the compound solution (he did offer to check for me though, I might just be a little stubborn and I'm scared of new things). My goal is to be a pharmacist one day but personally more natural treatments are more appealing than chemicals to me so if the flagyl does not work this time I will happily undergo the FMT. Along with my benefit I see this as another step towards FDA approval for the treatment, and hopefully one day will benefit many others as well so they don't have to spend months on antibiotics and relapse multiple times. Sarah T, I do agree with you that people shouldn't rule out the antibiotics because they are prescribed to help you and will work! I just personally see the FMT to be less time consuming and a more natural method. I've done A LOT of research on it and it's ancient medicine, before the chemicals and medical terms came about. Something about that is just comforting for me. Don't get me wrong, I love chemistry and the interactions that occur intrigue me and modern medicine is totally beneficial in so many ways. But putting whatever was in your colon to begin with (healthy bacteria) back into your body and letting the body work with what it knows could be less traumatizing on the body. I don't know, call me old fashioned I guess! (just kidding (: ) I could rant on and on about this, the good thing about this illness is that I can learn more about my body and myself AND I can see that there are still good people in the world! Everyone has their own preferences of treatment, and I think whatever you think is best for you is most likely best for you!

And so far on flagyl (I've taken 3 pills, not much) I am not feeling as bad as the first time! It seems to really help to have food in your system. Still had D this morning, but I ate and was able to keep food in afterwards. Almost choked because I used too much fruit roll up but other than that, it seems to help too! There's not much of a taste left over. I'm trying to alter my mentality into thinking it's just a normal day and there's no chemicals playing around in my body. Mind over matter!

Again, I really appreciate y'alls support and input. This can be a lonely illness, but it doesn't have to be! :)

-Rose

[Bobbie]

Rose,
I admire your "upbeat" attitude - rare in a first time C diff. patient. Love your sense of humor!

If Flagyl doesn''t help you (and it does help some but also can have some nasty side effects) I'd try Vanco. as the others suggested. See CDI - Vanco - conversion from IV to oral. Any compounding pharmacy can make it - along with most larger Walgreens and perhaps CVS.

There is also Dificid and FMT's. Dificid is very pricy, but there is aid available - see CDI.

See the FMT forum which is new to the site. There is a list of posters you can contact for information about the procedure. Several of us on the site have also had it and can provide basic information - but not medical details because this is strictly a support site. It has a high cure rate - about 92-94%.

Some docs. do advise you to take Imodium; many say it is a "no no." I took it - but only when I had inactive C. diff.

Keep us posted. Best of luck to you. And yes, we do understand what you are going through - we've all "been there." "Welcome to my C. diff. World" is not understandable unless you've suffered through it.

[saraht]

I myself am looking more into natural medicines, am currently trying several different natural remedies for chronic yeast infections and a yeast over growth in the mouth. I've had this problem for 3 years now, ever since I took clindamycin. I was hit c.diff and the yeast problems from the antibiotic, it just completely destroyed my flora. I have relapsed so many times on vanco, finally went into remission after a year, was good for a year, then relapsed again from a medication that is suppose to be considered safe to take for us relapsers. I relapsed on vanco tapers twice, went and seen a FMT dr who didn't think I needed the transplant. That was a blow! I was exhausted, but decided to take his advice and do a very long taper over about 6 months. I took it upon myself and research more about probiotics, and starting really getting into them. I drink kefir everyday which I love.

But I agree 100% for people like us who continue to have the issues, a FMT should be more available. Perhaps one day they will be, and c.diff will be just a thing of the past. I understand being weary of taking vanco or any other med, but for most of us vanco is ok. Less side effects than flagyl.

I actually was on vancomycin 6 out of 9 months of my pregnancy. No matter how much my ID and OB/GYN Drs reassured me that the baby wouldn't be effected since it stays in our GI tract, I was still scared. She is almost 2 now, and is a healthy little girl. No developmental issues, and is advanced for her age.

I hope things get better quickly and you can get back to school. Again, let us know how you do!

-Sarah

[seekingcure]

You're lucky to have found a doctor who is willing to do the FMT after two rounds of any c-diff antibiotic. Many require several relapses and at least one treatment with a Vanco taper or pulse. I agree that FMT seems like a much more natural approach. If it was offered as a first-line treatment for those of us who would choose it, we wouldn't have to deplete our already ravaged good bacteria further with all the antibiotics. Is your FMT scheduled for several days after you complete this round of medication or do you have to test positive again to qualify? Many doctors require at least two positive tests.

I hope to eventually see FMT again available for those of us who have IBS, crohn's disease or ulcerative colitis. Currently the FDA is only allowing it for c-diff infections, as far as I know. There were several doctors performing the FMT's for these other conditions prior to the FDA cracking down on it. I know Dr. Brandt in New York and Dr. Shepard in Tampa, Fl were doing them. My IBS is so much worse since my bout of c-diff that I would be anxious to try one if it were available for me.

I know that FMT has a high success rate, but it's not always an immediate complete cure. A number of posters have developed IBS after having FMT. Who knows whether it was from the actual FMT, the c-diff itself or the antibiotics taken prior to the FMT?

Good luck with your treatment. Let us know how things go.

[pinkangel]

I agree FMT is the way to go and look forward to the day it will be used before antibiotics. The antibiotics already have caused us enough trouble. I wish you luck in getting rid of it and I am sure you will especially with FMT. I do believe that Dr Shepard does these still for other issues. When I told them today I have Cdiff they said they will get me in sooner. They said they schedule the Cdiff FMTS before others . That leads me to believe they are still doing them.

[Bobbie]

See Mon Jan 27, 2014 4:22 am by ncmimi4
2 weeks post FT

Believe she went to the same doctor. Why don't you PM her and see what info. she can give you.

You will eventually get through this, but I know how difficult it is.

[AllisS]

Rose, re: your initial post: though I don't personally believe that "everything happens for a reason," the reason(s) that c. difficile happens are numerous, ranging from overuse of antibiotics to poor hygiene practices in medical facilities to general ignorance about this illness on the part of medical practitioners. Best wishes for successful treatment and recovery.

[C2Difficult]

Hi guys,

Thanks for sharing all of your knowledge and experiences with me! I'm sure many others can find this thread helpful. I've strayed away from the Imodium which feels like diving into trench in the ocean, that was my safety net when I wanted to spend time with friends on my better days. I know this isn't the tmi page but I'm sure the girls feel my pain when I say my first week of flagyl falls on the one week of the month… so there's that. I've already noticed my body reacting to the antibiotics, it could be worse but I keep getting headaches on the left side above my eye. Not sure if I'm just stressed or what, but I rarely get headaches. BMs are more formed, which is good but still urgent. Appetite isn't there and the metallic taste is there but not a bad as before, so the fruit roll up technique does help!

Sarah, have you sought out other doctors listed on the FMT foundation website? After multiple relapses you should definitely qualify.. I'm sure you could find someone who would do it for you! I felt bad looking for other doctors besides my GI but there's nothing wrong with getting second, third, or fourth opinions when it comes to getting better. Did the kefir help at all? I've read a lot about that. And that's awesome that you have a healthy baby girl! I'm sure she makes it easier to want to get up in the morning. I was worried for some reason I wouldn't be able to have kids after this, sex just seems so out of the question right now!

Seekingcure, yes I would have to test positive again for the FMT. The doctor said I could also have IBS since I don't wake up in the middle of the night to go (is that common for you guys?). Pinkangel's post below yours suggests there could be a doctor that will perform the FMT for you, so maybe you could look into that! Post what happens, I've got my fingers crossed for you :)

AllisS.. I know there are many physical reasons as to why cdiff happens. By "everything happens for a reason" I mean that with every bad situation that's happened in my life I've found that there are positive things that surface and I have the opportunity to grow as a person. You learn a lot about yourself when you're put in a bad situation. But if you let the negative take over, you won't see the reason. Does this make sense? I don't know, I'm rambling. I just think you can take as much from a bad thing as you can from a good thing. What we take from our experiences determines how we grow as individuals (in my opinion). Thank you for your positive wishes, I hope the same for you and if you are already recovered, cool beans!

[seekingcure]

Glad to hear you are doing some better. Headaches are listed as one of the side effects of Flagyl, so notify your doctor if they continue or get worse. I had the loss of appetite with Flagyl also. I tried to eat small amounts throughout the day rather than three large meals. I could manage a half a turkey sandwich or a half a baked potato at a time. I also like kefir and feel like it helps me some. Lately I have been buying the flavored LIfeway brand, but early on I was making my own. It's easy to make, but it's definitely an acquired taste--quite sour. I had to blend it with some fruit and stevia.

As far as IBS, I don't know about other people, but I sometimes wake up with severe stomach cramps in the middle of the night, usually followed by several episodes of D. Apparently it's more common to wake up in the middle of the night to go if you have c-diff, because I remember the doctor asking me that question also.

Hold on to that positive attitude of yours! It will carry you through the tough times and it's uplifting for the rest of us.

[saraht]

I too am glad to hear you're doing better. Flagyl is rough. I got weird headaches. I know well about the intercourse issue, as well as many other. You just feel ill, then there is the mental standpoint of it. My daughter did make it better to get up in the morning. I am very grateful she is healthy. I am over a month post vanco now with no relapse (knock on wood)

Actually when I hit the 2 week mark post vanco which is usually when I relapse I started getting ill. I was doing great, my husband and I decided to go to Philadelphia for the weekend, as soon as we got there, I had to go to the bathroom, then it just kept coming. Getting hit with waves of needing to run to the nearest restroom ruined our weekend getaway. Got terrible M and some B. Thought 100% sure I was relapsing. I was SO upset. I stayed up a lot that night in the hotel room crying, then slept most of the way home the next day so I didn't feel the urge to run to a bathroom. We live 4 hours from Philly.

Monday morning called my Dr who ran a c.diff test and it was negative. That was a shocker. Had them run another stool sample for other pathogens and ran a different c.diff test, again it was all negative. Before I got my results I was determined to find a Dr for a transplant. I had papers printed out and ready to be faxed to Dr Kelly in RI, who several people on here have seen. She was 8 hrs from me but you know at that point you just don't care anymore and you want to feel better. Looked up all my insurance info to makes sure everything would go smoothly. Thankfully I didn't have to, but that's not to say I won't need one in the future. I pray not, but none of us seem to have the best of luck. I had to chalk it up to IBS-PI which slowly started getting better. I will never be able to take any antibiotic without relapsing. Not even the ones on the safe list. So I pray the vaccine comes, and is a cure. Or like many others have done on here, take vancomycin along with the antibiotic treatment in attempts to prevent another c.diff infection.

I love kefir, I think it makes me feel better. Probiotics are personal and act different for each person. Some love them, some don't. Some drs swear by them, some are against them. Some prefer one brand, others another. It's possible that all the kefir I drink helped me to not relapsed, but no one is 100% sure.

Others on here that have had transplants, had their drs tell them no probiotics after a transplant. That it messes with the newly transplanted good flora. Then I have heard drs saying to take specific brands a month or so after a transplant. Every dr has their own way of how they like to do things. I don't think I have ever heard the same answer twice out of all the specialists I have seen about c.diff.

Hang in there, the transplant will be coming soon! We all know how rough you feel.


-sarah