Just diagnosed with C Diff

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ShannonS
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Posts: 25
Joined: Tue Nov 20, 2018 7:45 pm

Just diagnosed with C Diff

Postby ShannonS » Tue Nov 20, 2018 9:10 pm

Hello everyone
I am a 35 year old female and I tested positive for C Diff last week. Some history on me: I was healthy until 3 years ago when I started experiencing constant nausea on and off. I would have it for weeks everyday and then it would go away so I didn’t get it checked out as I don’t have insurance. The diarrhea was once or twice everyday. 8 weeks ago the nausea came back more extreme and I stopped wanting to eat. My husband insisted we go to the ER. I ended up having gallstones and they did emergency surgery to have it out. I spent 2 days in the hospital because my heart rate was high.
Ever since coming home, I’ve still had the nausea and diarrhea and vomiting. In and out of the ER several times. Fast forward 8 weeks and I’m not getting better. I finally get a appointment with a GI doctor. She does more bloodwork and also a stool test which the ER never did. She called me the end of last week and said that my stool test came back positive for C Diff and she started me on Flagyl 500mg 3 times a day for 14 days. I don’t have insurance so she didn’t prescribe the Vancomycin like she wanted to.
From the get go, had terrible side effects. Extreme nausea, vomiting, loss of appetite, racing heart, could barely drink anything, metallic taste in mouth. I got to day 4 which is today and I feel like I’m dying. Still having diarrhea 2-3 times a day. I know I got dehydrated and my husband called my GI doctor and left a message, but after almost passing out, we decided to go back to the ER.
That is where I currently am. They are talking about admitting me. Even though I mentioned the vancomycin, the doctor still gave me IV Flagyl. Plus IV Phenergan for nausea and Morphine because my stomach hurting. So far no side effects. I’m feeling good right now. Plus they are giving me fluids.
I found this site a few days ago after researching and was reading for a few days before deciding to register a account. I had no idea what C Diff is. I don’t know how I got it. Did I have it before the Gallbladder surgery? Or did I get it in the hospital? I don’t know. I do know that I want my life back. I haven’t been able to work in the past 8 weeks and we are feeling the financial pinch.
Well the doctor just came back in and told me they are admitting me and also giving me Vancomycin by mouth. Sorry for the book but I’m scared. Don’t know how long I’ll be in here.

Whyme111
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Posts: 58
Joined: Mon Jun 18, 2018 12:32 pm

Re: Just diagnosed with C Diff

Postby Whyme111 » Tue Nov 20, 2018 9:39 pm

Hi,
I am terribly sorry you're going through this! We all know the uncertainty it can bring. Were you on antibiotics around the time you started experiencing symptoms or even a month before that? If so, what kind?
I'm glad you're getting Vanco. I had Flagyl and relapsed and then was put on a Vanco taper/pulse, which I've now been off of for 14 weeks. I'm happy that you are feeling a little better already! It is a nerve wracking illness. This support site is great though and is very helpful. There are a lot of individuals who know a lot about it and can offer words of wisdom.

ShannonS
New User
Posts: 25
Joined: Tue Nov 20, 2018 7:45 pm

Re: Just diagnosed with C Diff

Postby ShannonS » Tue Nov 20, 2018 9:58 pm

When I first started experiencing symptoms years ago, I wasn’t on any antibiotic. When I went for my gallbladder surgery they said my white blood count was up a little so they gave me antibiotics through my IV, I think it was Clinamysin (sorry I’m not a great speller)
I’m nervous that my family is going to catch it though. We only have 1 bathroom at home. As soon as I found out about the C Diff, my husband took bleach wipes and started wiping the bathroom and everything I touched.

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

Re: Just diagnosed with C Diff

Postby NanciT » Tue Nov 20, 2018 11:55 pm

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

First, Flagyl is VERY harsh to take, it made me very ill and I needed up in the ER also. It is NO LONGER listed as a treatment for CDIFF. Please discuss this with your GI or ask for a 2nd opinion. If you google" New Guidelines for CDIFF" Flagyl has been removed. Either Vancomycin or Dificid are the treatment. Generally narcotics are not given with CDIFF because it can cause constipation and can be dangerous with CDIFF. Please have your husband or someone help you with this and gather all the information and have a meeting with the doctors. I would insist on Vancomycin. You need someone to advocate for you Also have them take a good look at this site

The other concerning issue is IV medications are not a treatment for CDIFF, they need to be oral and get through the gut.

I am so sorry you are going through this

NanciT

AllisS
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Posts: 1889
Joined: Fri Sep 07, 2012 10:52 pm

Re: Just diagnosed with C Diff

Postby AllisS » Wed Nov 21, 2018 1:57 am

Another welcome to the site. Sorry about the ordeal you've been going through. As Nanci mentioned, Flagyl is no longer recommended as treatment for C. diff. I don't remember vancomycin (which I was given for C. diff after Flagyl wasn't successful) as being expensive. Dificid, which is even more effective than Flagyl, is more costly; however, I think there may be financial assistance available from the manufacturer. The fluids were probably given because you were dehydrated when you were admitted to the ER.

You mentioned that your husband was wiping down the bathroom with bleach wipes. It's a good idea to wipe down hard surfaces, especially in the bathroom -- e.g., countertops, toilet handle, doorknob -- with either wipes or a home-made bleach solution (one part bleach to nine parts water). However, ordinary bleach wipes aren't effective against C. diff. If using wipes, a product that's available only online (e.g., through Amazon), Clorox germicidal bleach wipes, can be ordered. When you say he's also wiping everything you touched -- that's unnecessary, other than in the bathroom; C. diff isn't transmitted that easily. The most effective way to prevent its spread is thorough handwashing with soap and water.

Hope you feel better soon.
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

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

Re: Just diagnosed with C Diff

Postby beth22 » Wed Nov 21, 2018 2:37 am

Dificid is another drug that is used to treat c difficile and it is also very expensive, but the company that makes it has an assistance program and you can get it for free or for low cost. I know several who have done that. You might want to see about applying since you will need to continue medication once you are out of the hospital.

roy
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Joined: Sat Aug 02, 2014 1:05 am

Re: Just diagnosed with C Diff

Postby roy » Wed Nov 21, 2018 4:51 am

Vanco pills can be very expensive without Insurance $2000+!
Flagyl given by IV does treat c.diff but is not "the best"
Theres a way of reducing the cost of vanco to around $100 for a 2 week course.
Ask for it to be prescribed in liquid form.
NOT the ready made version called Firvanq but ask for the version that is made from the powder in the vials that are used for the IV version.
It's not branded so it's cost is not inflated by manufacturers excessive profit!
Its EXACTLY the same medication.

ShannonS
New User
Posts: 25
Joined: Tue Nov 20, 2018 7:45 pm

Re: Just diagnosed with C Diff

Postby ShannonS » Wed Nov 21, 2018 5:23 pm

Thank you everyone for your comments. The internist came in this morning to talk with me. He said that he is taking me off the IV Flagyl since it’s not recommended anymore for treatment. I’ve been taking the Vanco capsules and my D has decreased. He is saying they will probably send me home tomorrow. I still have a lot of nausea. I wish it would let up. The anti nausea medicines they are giving me are half working. I still have loss of appetite. I get hungry but I find it hard to eat. I have to force myself.
I do have a question for anyone that took Vanco: did you experience any muscle aches or cramps? Because my legs are cramping up real bad. I told my nurse and she said she is going to talk to the doctor.
They are trying to get me emergency state insurance since I’m not working right now. That will cover the hospital bills and the prescriptions.

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

Re: Just diagnosed with C Diff

Postby NanciT » Wed Nov 21, 2018 5:45 pm

Hi Shannon

Very glad to hear you are on Vanco and it's starting to work. One thing is to make sure they check your Potassium level and all electrolyes before leaving the hospital. I did have this issue with Vanco and Potassium although it is not common. It caused me alot of nausea, I used "Sea Bands" for a very long time. They have them at most drug stores. They helped.
It can take some time to feel better but it sounds like you are on your way. Hang in there, things will improve. Stick to a bland diet to give the gut a rest while recovering.
Take Care
NanciT

sammyp
Contributor
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Joined: Thu May 24, 2018 2:08 pm

Re: Just diagnosed with C Diff

Postby sammyp » Thu Nov 22, 2018 4:11 am

Yes, I had calf pain during most of my time on Vanco. And don't be surprised about the appetite. Mine still isn't what it was and I'm 13 weeks post Vanco treatment. Most days I have to force myself to eat. It's definitely better than it was (I didn't eat for over 3 weeks before I was diagnosed) but it's been a process trying to get back to normal.

MKW
Regular Contributor
Posts: 392
Joined: Mon Sep 26, 2016 9:49 am

Re: Just diagnosed with C Diff

Postby MKW » Thu Nov 22, 2018 4:10 pm

I am so sorry you are going through this... everyone has already given you great advice.
I wanted to tell you - first, I work on patient accounts for a large hospital organization. Let them help you get your bills paid, or written off to charity. Trust me they prefer this over collections efforts.
Also, the 10% bleach wipes on Amazon are great. Spraying a 10% solution is better, but you end up inhaling a lot of bleach fumes!
I used the spray for the toilet, and the wipes for bathroom counters and surfaces.
And Walmart sells boxes of 100 count nitrile or latex gloves for $8.
You can wear these while using the toilet and wiping, then toss in the trash.
Then you don’t have to wash your hands so extensively.
C Diff spores are spread hand to mouth.
Encourage everyone in your household to wash hands regularly.
There are very reasonable tips for household care on the c Diff foundation website.

ShannonS
New User
Posts: 25
Joined: Tue Nov 20, 2018 7:45 pm

Re: Just diagnosed with C Diff

Postby ShannonS » Fri Nov 23, 2018 5:21 pm

Update on me:
I came home from the hospital yesterday. They put me on Vanco 125mg 4x a day for 14 days, well 12 days since I started it in the hospital. I slept the rest of yesterday except to take the medicine. I woke up today and no nausea so far. I am praying that the nausea is gone. It’s the first day in almost 9 weeks that I haven’t had it! My appetite has came back better. Now I’m eating soup, broth, and drinking Ensure clear. I didn’t know Ensure made that. It’s juice, not the milkshakes. My stomach didn’t like the protein shakes. The only thing since starting the Vanco, I’m really exhausted, but I will take that over the nausea and D. I also get heartburn, but only at night. My leg muscles still cramp up but only at night.
My D since starting the Vanco is only 1-2 times a day, and it’s only a little bit. When I was in the hospital, I didn’t have a BM at all.
It’s like night and day for me since being off the Flagyl and starting the Vanco. They need to ban Flagyl or put a warning on it. I wouldn’t give that medicine to my worse enemy! I’m still trying to get state insurance. I hope I don’t releaspe as I can’t afford anymore Vanco right now. The doctor was able to get my prescription for free before I left the hospital. I go back to my GI doctor on December 19th. My husband bought some bleach spray and we’ve been wiping down the toilet and counter and sink after every use. Stopped wiping everything I touch since I found through everyone on here that it’s unnecessary. My husband is still insisting on washing my clothes by themselves.


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