New to C Diff and really need advice!

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Mixdemoj
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Joined: Sun Sep 17, 2017 6:45 pm

New to C Diff and really need advice!

Postby Mixdemoj » Sun Sep 17, 2017 7:08 pm

Hi there,

I am new to the board. I am also new to C diff. Here is some background about what is going on:

Back in April/March/May I began to have several UTI and yeast infections. I was placed on several rounds of antibiotics to treat a UTI that seemed to last over a year. A few weeks later in June, I was bit by a tick and presented the bullseye rash, and was given antibiotics to treach like disease. During this time I started having serious problems with diarrhea, panic attacks, and insomnia. Since July, I have been having 5+ stools a day, fatigue, chills, depression, and have lost the ability to enjoy anything I did before. I am a mother of four, all under the age of 9.

I also have undifferentiated connective tissue disease. During the months of July and August I was treated for depression and anxiety with my doctors thinking all of my problems were depression. My diarrhea become to the point that if I put anything in, it immediately came out. I couldn't take medication because I was throwing everything up, I lost ten pounds in a week, and I was having over 10 BMs a day. Two weeks ago the doctors took a stool sample and I tested positive for C Diff. I was given flagyl for 10 days.

I have since finished the flagyl. It's only been a day since my last pill, but the last five days I have spent getting right back to the way I was before. I have no appetite again, I am having BMs 5+ times a day (6 just today), I have no drive to do anything around the house, and I am feeling so depressed at this moment. I don't know what to do.

I really thought I would get some relief but it seems like it's back with avengence. What do I do? My doctor doesn't plan to see me for two more weeks and said that during these two weeks to just "stick it out." Can anyone help?
Last edited by Mixdemoj on Sun Sep 17, 2017 7:36 pm, edited 1 time in total.

Mixdemoj
Brand New Poster
Posts: 4
Joined: Sun Sep 17, 2017 6:45 pm

Re: Should I go to the ER?

Postby Mixdemoj » Sun Sep 17, 2017 7:12 pm

I just want to make sure to say that I am not asking for medical advice here so much as for someone to relate their experience.

I would also like to add that I have more flagyl. They gave me double what I needed and didn't know if it would help any to take what was left

Machaon
Regular Contributor
Posts: 254
Joined: Sat May 20, 2017 11:50 am

Re: New to C Diff and really need advice!

Postby Machaon » Sun Sep 17, 2017 7:57 pm

Hi mixdemoj!

I took 14 days of flagyl and was still sick. I called the doctors office and requested 14 days of vancomycin which they electronically sent to my Pharmacy. You might consider calling your doctor and requesting another prescription, of which he feels is appropriate.

Sorry you are having such difficult reactions to C-diff. It is a nasty infection which saps one's energy and makes one feel very sickly!

Personally, I would never have been strong enough to take care of 4 kids under 9, with C-diff, so I've got to applaud your strength and dedication, and hope you will get better and feel better in a short time!
Male 77 S.Florida

900 weight lifts 750 knee bends day

Since 1987 had CHF afib asthma

I inhale $6 Flonase nasal spray for asthma :)

Ex C-diff (4/19/17- 9/12/17) after 10 days dificid

Diet:6 meals ~1500 cals 2 eggs 2 steamed broccoli, apple, bagels

NanciT
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Posts: 3035
Joined: Thu Sep 18, 2014 12:01 pm

Re: New to C Diff and really need advice!

Postby NanciT » Sun Sep 17, 2017 8:48 pm

Hello and Welcome to the site Please read the first thread for all new posters

Sorry you had to find us and are going through this. If you have completed the flagyl and your diarrhea continues, see your doctor now. It can take more than a round to beat this. I would also suggest your see a GI specialist if you are still having these symptoms.

Dr.s often do not retest, they treat symptoms so if the diarrhea continues, you may need more medication. I would ask for Vancomycin if the Flagyl did not work.

I hope you feel better soon

NanciT

Mixdemoj
Brand New Poster
Posts: 4
Joined: Sun Sep 17, 2017 6:45 pm

Re: New to C Diff and really need advice!

Postby Mixdemoj » Sun Sep 17, 2017 9:15 pm

Machaon wrote:
> Hi mixdemoj!
>
> I took 14 days of flagyl and was still sick. I called the doctors office
> and requested 14 days of vancomycin which they electronically sent to my
> Pharmacy. You might consider calling your doctor and requesting another
> prescription, of which he feels is appropriate.
>
> Sorry you are having such difficult reactions to C-diff. It is a nasty
> infection which saps one's energy and makes one feel very sickly!
>
> Personally, I would never have been strong enough to take care of 4 kids
> under 9, with C-diff, so I've got to applaud your strength and dedication,
> and hope you will get better and feel better in a short time!




Thank you so much for commenting! I called the Nurse on call and she wasn't aware that my doctor hadn't actually explained what C Diff was clearly, and recommended trying to get an appointment or going to the urgent care they have on site tomorrow if I can't so I can get a different medication. I want so badly to feel better, and I really want this over because I am running out of Clorox wipes and dont want to get the kids sick!

beth22
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Posts: 10852
Joined: Tue Apr 07, 2009 2:23 pm

Re: New to C Diff and really need advice!

Postby beth22 » Sun Sep 17, 2017 10:11 pm

If you can't get an appointment go to Urgent Care of the ER. I would ask for Dificid if your insurance covers it. If not, then vancomycin. Flagyl is not that effective for many people. I did not take it and vancomycin did not help me much, but Dificid was not out yet. I really would not "wait it out". Get some help tomorrow!

georgina
Long Time Contributor
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Joined: Sat Sep 12, 2015 10:07 am

Re: New to C Diff and really need advice!

Postby georgina » Mon Sep 18, 2017 12:42 am

Hi
Sorry you are dealing with Cdiff . As Beth said , Flagyl often fails to cure the infection and sometimes it can actually make CDiff worse ,and just want to add that Flagyl; is not an FDA approved drug to treat Cdiff. If one round of Flagyl failed already it is pointless to take another as it would probably fail again. Go back to your physician , or the ER in case you can't get an appointment , and ask for Vancomycin or Dificid. Try adding a good probiotic to the treatment , Saccharomyces boulardii is studied to be the most effective in the battle with Cdiff.
Hope you get some relief soon!

Musings
Regular Contributor
Posts: 313
Joined: Tue Nov 01, 2016 8:38 am

Re: New to C Diff and really need advice!

Postby Musings » Mon Sep 18, 2017 10:44 am

As others have stated, flagyl often fails to beat c.diff for a lot of people (like Georgina mentioned, I am one of those people who had the lovely effect of flagyl making my c.diff worse...) and it's just a harsh drug overall with a lot of side effects. If you can, get Dificid (there are assistance programs if your insurance doesn't cover most of the cost) would suggest that but if not ask for vanco and hopefully those treatments can get you feeling better and on the road to recovery.

Mixdemoj
Brand New Poster
Posts: 4
Joined: Sun Sep 17, 2017 6:45 pm

Re: New to C Diff and really need advice!

Postby Mixdemoj » Tue Sep 19, 2017 6:53 am

I went back to the doctor and tested positive again for C Diff. My symptoms have increasingly gotten worse AND my insurance will NOT cover the Vanco!! I am not sure what to do now since I can not afford this medication out of pocket. Anyone else experience this? What programs could help, if any, me be able to get a hold of this medication?

Musings
Regular Contributor
Posts: 313
Joined: Tue Nov 01, 2016 8:38 am

Re: New to C Diff and really need advice!

Postby Musings » Tue Sep 19, 2017 9:11 am

You can get the vanco compounded as a liquid formula which brings the cost down significantly (around $100, I believe) so would ask your doctor about prescribing that so you can start. You can also ask your doctor to intervene with your insurance company and push for the vanco to be approved but would ask for the liquid version in the meantime.


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