Just diagnosed today with cdiff

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IsThereReliefInSight
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Just diagnosed today with cdiff

Postby IsThereReliefInSight » Thu Mar 20, 2014 8:49 pm

Hello all,

I am an RN that was just diagnosed with c-diff after finishing a course of augmentin (Amoxicillin/Clavulanate Potassium). I have been having mucousy, watery, and sometimes bloody stool since Sunday. The doctor who prescribed me the antibiotic just chocked it up to the anbitioci since it can cause diarrhea in up to 30% of patients. However, i had stopped the antibiotic 4 days earlier. Being a nurse it was a red flag to me that it was c-dfif but i went against my better judgement and hoped it would clear up on its own. WRONG i suffered for 2 more days and i finally scheduled an appointment with my PCP. C-diff came back positive ( as i knew it would) I started keifr on Monday and actually was feeling better by Wednesday all on my own however my doctor decided to start me on flagyl 500 mg 3 times a day for 10 days. I am researching probiotics and i think i might go with ultimate flora and florastor. Has anyone had any success with these two? I like i said work as a nurse and I do not A) want to get my patients sick 2) do not want to have any reoccurances! I am only 27! :(

seekingcure
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Re: Just diagnosed today with cdiff

Postby seekingcure » Thu Mar 20, 2014 9:24 pm

STANDARD INTRODUCTION:
Welcome to the site. Read the first forum “All Users Read This First” and subtopics “Site History” and “Information and Guidelines for Posting to our Discussion Boards.” (Note limits on posting.) This will guide you in using the site and answer some of your questions. Read Dr. Borody's articles. Also see the topics under “CDI” – particularly Recent CDC Report, The C. diff. Bible, Tests, Antibiotics, Hygiene, and Nutrition.

“Doctors” lists physicians our posters recommended and also a list of C. diff. specialists throughout the world with contact information. (Many perform FMT's.) See the new forum “FMT’s and FE’s” or “Media Reports” for new information on C. diff.

The majority of patients (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. You can help by educating your family, friends, neighbors, and co-workers. Help us make others aware of C. difficle – which will lead to further advances in treating and/or preventing the infection. If antibiotics contributed to your C. diff, be careful about taking them again. Some people tolerate them; some develop C. diff again. Don’t take medications for C. diff. unless you are tested.

If a medication contributed to your case, please fill out an Adverse Event Report online at: http://www.fda.gov/Safety/MedWatch/default.htm. Under "Resources for You," in left-hand column, click on "Report a Serious Medical Product Problem Online." (Allison provided this information.)

The best protection for you and others is thorough hand washing and good hygiene. (See Dr. Borody’s articles and “CDI.”) For more information, see other support groups on Facebook, including http://www.peggyfoundation.org, the Mayo Clinic and Web MD web sites, and “The FMT Foundation” under “Links” on the homepage.

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, emotionally, and financially disabling it can be.

Again, welcome. Remember, the odds are in your favor. (End of letter.)

I am so sorry to hear you have contracted c-diff. I drank a lot of kefir when I had c-diff. If you are doing research, you have probably read articles about it helping to prevent relapses of c-diff. I also took Jarrow s. boulardii (same as Florastor) along with VSL-3. These two seemed to help control symptoms for me. I did relapse after Flagyl, but was cured with a taper/pulse of Vancomycin. I was on it longer than normal because of recurrent UTI's that kept necessitating other antibiotics. If you are interested in further information on probiotics, I suggest you read a book by Kelly Karpa, called Bacteria for Breakfast. I got the kindle edition on Amazon for just a few dollars. It's been out awhile, but has a lot of good information that is still pertinent.

You have youth on your side, so hopefully you will bounce back quicker than some of us older folks on site. Of course, you know to try to avoid antibiotics in the future, especially near future, if possible; and hand washing is your single best defense against getting it again. The alcohol-based hand sanitizers that are so popular in hospitals and doctor's offices don't kill c-diff spores. Keep us posted on how you do.
Bea

chunderly
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Re: Just diagnosed today with cdiff

Postby chunderly » Fri Mar 21, 2014 6:53 am

I'm a nurse, too, and the same thing happened to me about a year ago. I did well after flagyl and didn't relapse. It made me feel horrible and I lost a lot of weight while on it.

As for probiotics I took florastor while on flagyl, then switched to vsl #3 (super expensive but very high quality and recommended by a gi doc). I actually paid for a consumer reports article on probiotics and they're level of quality and they found that the Jarrow brand probiotics had actual counts that were similar to the claim on the bottle, while most other brands didn't.

I hope that the flagyl does the trick for you. Just remember that you'll be at risk to pick up new c diff for weeks after finishing treatment while the gut flora restores itself so be extra extra cautious at work.

lucidvision
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Re: Just diagnosed today with cdiff

Postby lucidvision » Fri Mar 21, 2014 4:23 pm

I'm right there with you, just got diagnosed today - a week after symptoms started. Started Flagyl for 10 days. I'm a vet tech in an animal hospital, who was given Amoxicillin then Clindamycin following a tooth infection and extraction 3 months ago. I believe that might be the cause of my C. diff. (Right before symptoms began I had been on a 5-day Z-pak course, but my PCP doesn't think that was the cause). I've been out of work all week due to the severity of my symptoms. The abdominal pain and nausea is the worst, of course so is the diarrhea (and mine has frequently been bloody). I've lost about 10 lbs. I used to drink Kefir so I'm gonna get some of that, I'm glad you reminded me about it. I'm taking a probiotic but I don't think it's a very high quality one. I think I just naturally have a bit more of an imbalance of bacteria than I should and antibiotics are really hard on my body. I'm most curious about how people who get severe abdominal pain treat it, as mine has been awful. Here's to hoping treatment works the first time and we don't relapse!

AllisS
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Re: Just diagnosed today with cdiff

Postby AllisS » Fri Mar 21, 2014 5:14 pm

lucidvision, I, too, contracted c. difficile after being given clindamycin (though not after a dental procedure). Clindamycin is probably the highest-risk antibiotic for c. diff. Amoxicillin, another broad-spectrum antibiotic, is also a frequent offender. I am surprised that your dentist would give you not just one but both of these risky antibiotics in close sequence. I hope you will complete FDA's online adverse-event form for each of the drugs you were given. This is important because it is the only reliable way that FDA has of knowing how many people are sickened by these drugs; we can't count on doctors, dentists, and hospitals to report instances of c. difficile. Here is the link:

http://www.fda.gov/Drugs/GuidanceCompli ... efault.htm

Best wishes for a quick recovery.

Allison
If your illness was preceded by use of a medication, e.g., an antibiotic, please fill out an FDA Adverse Event Report at http://www.fda.gov/Safety/MedWatch/default.htm

seekingcure
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Re: Just diagnosed today with cdiff

Postby seekingcure » Fri Mar 21, 2014 6:15 pm

lucidvision, one of the most helpful things to me when I have stomach cramps is a heating pad. Some doctors will prescribe an antispasmodic once you are on an antibiotic for c-diff. Ask about it. Your pain and D should begin to subside within a few days of starting on medication. If it doesn't, contact your doctor and ask about being switched to a different antibiotic. Dificid is one of the newer ones, but it is very expensive unless you have good insurance to cover it. Vancomycin capsules are also expensive, but the IV powder can be mixed into a liquid form that is much cheaper. Kefir is a good idea. There was a study done showing that kefir had some benefit for reducing the possibility of relapse if taken while being treated for c-diff. S. boulardii yeast (Florastor and Jarrow brands are good.) Many doctors recommend s. boulardii. My GI recommended it as well as VLS-3, a very good quality probiotic, but expensive. Start slowly with whatever probiotics you try, as they can cause GI upset for some. They don't bother me, but there are several on site who cannot tolerate them or can only tolerate very small amounts.
Bea

lucidvision
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Re: Just diagnosed today with cdiff

Postby lucidvision » Sat Mar 22, 2014 1:56 pm

Thank you all for your replies. AllisS, I did go ahead and fill out an adverse reaction form on the FDA site you linked to.

seekingcure, yes the heating pad does help, although it also seems to encourage me to go to the bathroom sometimes too... at least if I've eaten recently. Today I'm not in the mood to eat so far. The abdominal cramping was pretty bad this morning. I have some leftover Klonopin when I was going through a phase of anxiety & mild depression in the fall, and am occasionally using this Klonopin to help me relax. Also, there are these "self-hypnosis apps," one of which I have that helps relieve pain by imagining all the pain leaving your body and healing energy coming through. So that helps temporarily. You have to let yourself become deeply relaxed for it to work.

I have insurance through Kaiser Permanente, and my job pays for a pretty good plan. I don't have to pay for my prescription drugs, I know, lucky me. But on the downside, I think that means it would be harder to request more expensive meds (such as the Difficid or Vanco, not even sure if they would have it). It may not be "in their formulary" as they call it. Not sure how many people on here are familiar with Kaiser..

I'll look into those probiotics you mentioned, thanks for letting me know the recommended brands. I know Jarrow is good. Again thank you guys for such prompt replies to my posts, it is much appreciated! This site has been very helpful in only the short time I've been here.

code3rn
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Re: Just diagnosed today with cdiff

Postby code3rn » Sun Mar 30, 2014 1:02 am

Lucidivision I am an RN with kaiser as well. I think you have to fail on flagyl first or have an adverse reaction before they would allow you to have vanco. Not sure about dificid though . Where may I ask do you live? I know kaiser walnut creek is doing FMT's on patients with reoccurrences now. Something to think about if you do relapse, but hoping you do not!!

beth22
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Re: Just diagnosed today with cdiff

Postby beth22 » Sun Mar 30, 2014 1:34 am

If you have side effects from the Flagyl like tingling or numbness, then they would have to give you something else.

IsThereReliefInSight
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Re: Just diagnosed today with cdiff

Postby IsThereReliefInSight » Mon Apr 07, 2014 3:36 pm

Just wanted to update everyone... I finished my flagyl on March 30th and thought i was doing well but relapsed again yesterday. Spend the night in the ER PCR test came back positive i was started on liquid vanco today (125mg 4 times a day for 10 days.) I am continuing to take my ultimate flora womens probiotic twice a day and florastor (Saccharomyces bouldari) twice a day. I am going to try and see if my PCP will refer me to a GI doctor. This pain and suffering is unreal. I wouldn't wish this on anymore. has anyone had any success on vanco after their first relapse?

ppp67
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Re: Just diagnosed today with cdiff

Postby ppp67 » Mon Apr 07, 2014 5:56 pm

yes. Vanco worked for me after Flagyl failed. I bet hundreds here can say the same.
And I'm still good 8 months later.
Recovery is slow but I do not have active CDIFF anymore (fingers crossed).

IsThereReliefInSight
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Re: Just diagnosed today with cdiff

Postby IsThereReliefInSight » Mon Apr 07, 2014 6:13 pm

Thank you ppp67, if you dont mind me asking can you tell me the dose and duration of your vanco? I know everyone is different however, it would be nice to know. Thank you

Bobbie
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Re: Just diagnosed today with cdiff

Postby Bobbie » Mon Apr 07, 2014 10:44 pm

IsThereReliefinSight,

Sorry you had a reoccurrence. I empathize - happened to me so many time I couldn't count them. If Vanco. doesn't work this time, there is always Dificid and the FMT which its high cure rate.

Some need to be on 250 mg. 4X a day. Wait and see how the 125 mg. quid does.

Frustrating, but ultimately you will beat this.

ppp67
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Re: Just diagnosed today with cdiff

Postby ppp67 » Wed Apr 09, 2014 1:16 pm

My dose? I forget but I remember taking 1 pill various times a day, for 14-days.
My first thoughts were it didn't seem to be doing too much. On day 9, I seemed to
be getting sick again (like day 9 with flagyl) but I kept with the program. Things straightened out.

CDIFF causes damage which takes months or longer to heal, so depending on how sick
you are (were), you need to be patient after the VANCO, eat wisely, exercise and heal. It takes time.

You probably heard on this site -- everyone is different. Well, let me take it a step farther.
Every CDIFF infection is different. It's a bacteria that mutates. How do you explain why
CDIFF is more toxic and deadly these days, and why it's resistant to many antibotics including flagyl.
Flagyl is still the antibiotic of choice (perhaps this is changes though).
CDIFF mutates, so who knows how many strains are out there on the go. Some are more resistant than
others.

Having said that, it would be wrong for me to tell anyone exactly how their CDIFF will behave, what
works and what doesn't.

Bobbie
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Re: Just diagnosed today with cdiff

Postby Bobbie » Wed Apr 09, 2014 3:21 pm

You are so right. There are different strains of C. diff. now and different people react differently to the same strain. Little we can predict about C. diff. except give you a few basic tools to try and cope and to provide support.

Write your meds. down when you take them and the dosage. Best way to remember while under stress - and C. diff. is major stress. There is a lot more known about C. diff. now, however, and different treatments.

Flagyl is usually still the first drug prescribed because it is inexpensive, and Vanco. and especially Dificid are not. It still works for some although maybe have nasty side effects.

It's usually best to go to a GI or ID because they see more cases of C. diff. than "regular" docs - although there are exceptions.


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