Diagnosed with severe c diff infection & shocked

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abroad
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Diagnosed with severe c diff infection & shocked

Postby abroad » Mon Mar 05, 2018 6:05 pm

Hey everyone,

I was put on antibiotics about 2 weeks ago for a sinus infection that traveled to my lungs. I never had antibiotics before and no one ever mentioned any possible serious consequences. I trusted the healthcare system to be honest and transparent, especially about certain risks.
Anyway, the first day of taking the meds I got severe diarrhea, I thought it was just one of the side effects and tried to toughen it out. But after 4 days it got so bad I stopped taking the meds because I was getting dehydrated, and started drinking probiotics immediately.

Within 4 days I was lying on the floor because I was bleeding & had high fever. my husband rushed me to the ER. They did every test and said my white count was way up but the CT scan did not show anything. They send me home after an IV with fluids. I knew something was very wrong, and within the hour they called me back and told me to come back asap because I had a bad case of C Difficile.......C what? I Flatlined/nuked my precious gut by taking meds? How is this not on the label!

They gave me oral Flagyl tablets.

OH MY!!!!!! This stuff is absolute poison. I got so violently ill ( even with 32 mg of zofran a day to fight the relentless nausea) and the pressure behind my eyes made the veins pop. I was seeing double and everything got weird. The taste in my mouth as you guys know did not help with the nausea :/ Oh and I am still not getting any better after 5 days of taking it. I currently weigh 87 pounds at 5'5...I would like to eat something lol

I went back to my doctor and begged him for Vanco..I live in Canada and it will cost me 700$ for two weeks. At this point I had to scrape and beg inlaws and had to beg my doctor. His response: " I'm not giving you Vanco, it is way more effective and potent but it costs too much and you can only get this when you have tried the Flagyl longer" I cried and my husband stepped in. Lets just say he got angry :D

We are waiting now for the meds, I stopped taking flagyl this morning because my body would not let me take one more poison pill. I am nervous about not getting it until tomorrow because my infection is bad bad and one day without meds to fight it might put me in danger of blood poisoning says the hospital. They already did more blood work today just in case.

I am praying the Vanco will not make me violently nauseous and have double vision, because I can't fathom the idea of spending 700$ for more poison.

wow , what a rant. But at least you guys know how sick I am right now. I have never felt this sick in my entire life. It feels like food poisoning X 10 and ongoing. This sucks!

NanciT
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Re: Diagnosed with severe c diff infection & shocked

Postby NanciT » Mon Mar 05, 2018 6:42 pm

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

Sorry you are going through, we do have several posters from Canada so I am hoping a few will jump in to help about the medication coverage. I know Vanco is expensive but that seems very high.
Are you seeing a Gastroenterologist? If not, try and get in with one. It's always best especially when you doctor did not want to give you Vanco. Flagyl is horrible to take,it also made me very sick,
I hope you start feeling much better as you start Vanco. I did have nausea on Vanco but used "Sea Bands" and they helped a great deal. Well worth trying, I used them for a very long time.

Also you did not mention the antibiotic you took, make sure you find out what it is

Feel better soon!
NanciT

abroad
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Re: Diagnosed with severe c diff infection & shocked

Postby abroad » Mon Mar 05, 2018 8:58 pm

They reduced it to 500$ I just took my first dose. I am praying it does not make me nauseous because I really need to start eating something. I have not eaten for 14 days. He did not want to give me Vanco because it is too expensive, he told me it would be way more effective. He is also trying to claim the money back from some government program, so hopefully I will get some of it reimbursed.

I read that Vanco mostly causes less nausea, or at least not so violent that you can't eat all day. Lets pray this works.

jennnny
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Re: Diagnosed with severe c diff infection & shocked

Postby jennnny » Mon Mar 05, 2018 8:59 pm

My insurance and Rite Aid wanted me to pay $3,000 for a course of vanco, I went to costco and it was $150 for the same, generic pills. See if you can find a discount online or if you have a Costco nearby.

roy
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Re: Diagnosed with severe c diff infection & shocked

Postby roy » Tue Mar 06, 2018 9:15 am

If you ask for liquid vanco it's far cheaper at about $100.
A compounding pharmacy uses the powder that's in IV vials and mixes it with liquid so you can take it oraly.
SAME medication!
No pharmacy company profit mark up though!

Machaon
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Re: Diagnosed with severe c diff infection & shocked

Postby Machaon » Tue Mar 06, 2018 10:47 am

abroad wrote:
> I have not eaten for 14 days.

It is so very important to eat and give your body the fuel it needs to be strong and to fight! The best medicine you can take is "food"! If it is difficult to eat, make a can of soup and try to eat one or two tablespoons. Then a little later on, eat another one or two tablespoons, and so on and so on.

I eat six small, low calorie meals a day. When I was at my worst with C-diff, I barely ate one small, "easy to digest" meal a day, but I got it down and kept it down. After I stopped taking the nauseating, horrible Flagyl and started on Vancomycin, I was able to eat more.

I hope that you have a full recovery while taking Vancomycin. Feel better fast!

Bob
Male 74. S Florida. Retired systems analyst and programmer

1987 had CHF, perm afib, sensitive asthma, autoimmune

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

Diet:6 low cal meals <1500 cals, 2 eggs a day, 4 large salads, cereal, yogurt, cheese

abroad
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Re: Diagnosed with severe c diff infection & shocked

Postby abroad » Tue Mar 06, 2018 1:40 pm

I live in Canada, my doc says the liquid form is just as expensive.

I’ll try Costco if I need a second round.

I chicken noodle soup okay? I heard nothing greasy?

I am still nauseous and the metallic taste is still so strong, how long will it take for it to disappear from my mouth?

roy
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Re: Diagnosed with severe c diff infection & shocked

Postby roy » Tue Mar 06, 2018 8:19 pm

Drs do not deal with medication they only prescribe it.
Ask your pharmacy about cost of liquid vanco.
If your pharmacy quotes a high price then change pharmacy!
Be specific that you want the vanco that is reconstituted from the IV vanco vials, not anything that has a brand name.
It's exactly the same med and full cost is very much lower.

sophie
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Re: Diagnosed with severe c diff infection & shocked

Postby sophie » Wed Mar 07, 2018 12:59 pm

Re. Vanco - also check out a compounding pharmacy if your regular pharmacy doesn't have access to the liquid form. Having lived
in Canada for most of my life, I know there should be compounding pharmacies who should be able to help you out.
Good luck!

Megs717
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Re: Diagnosed with severe c diff infection & shocked

Postby Megs717 » Wed Mar 07, 2018 8:52 pm

I am so sorry that you're so sick. I know the feeling. My first experience I hadn't crashed that bad yet - and started on Flagyl. I took ten days of it, and within 3 days of stopping, I was in the hospital with a very high white blood cell count, and an ever swelling colon. It was misery. I will say this, I actually felt a difference after my first dose of vanco. Within 24 hours I could've been a different person. My WBC dropped by over 10,000 within 24 hours of Vanco. I am on day 10 of Vanco now, eating relatively normally (but I've noticed some things don't "sit" well and start the various intestinal pains - but not severe) but I am back at work, and have an appetite, so I'll take some random pains. You need to get something down, and stay hydrated. That's equally important to any medications. Additionally, if you get too dehydrated, you're opening yourself up to a variety of complications, including the potential for cardiac problems.
Hopefully you're on Vanco and feeling better now. It's night and day from Flagyl.

abroad
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Re: Diagnosed with severe c diff infection & shocked

Postby abroad » Thu Mar 08, 2018 2:46 pm

Wow guys, Vanco is amazing! The next day I was already feeling better and I could keep water down. The next day my abdominal pain lessened and I slowly ate a whole can of soup and some crackers, and today the bleeding has finally stopped and I don't need any zofran for the nausea anymore. Why on earth does flagyl even exist, it is a monstrous and horrible drug that no one should ever touch. It was literally poisoning me!

I can't eat anything solid yet, I don't want to shock my system, but I think I'll give it a go if today I can get two soup cans and crackers in.

Any suggestions of good foods to start with?

Bananas, Mashed potatoes? Can I eat bread? or pasta...I heard some people are sensitive to the gluten after this and lactose. Is it okay if I eat lactose free probiotic yoghurts?

I know it is early but I'm so happy you guys, I'm praying 1 round will be enough. Do most people heal after 1 or do most people need 2.

Bobbie
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Re: Diagnosed with severe c diff infection & shocked

Postby Bobbie » Fri Mar 09, 2018 1:44 am

Glad u are feeling better.

See CDI - Nutrition for tips on what to eat.

Hang in there.

abroad
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Re: Diagnosed with severe c diff infection & shocked

Postby abroad » Mon Apr 02, 2018 12:10 am

*UPDATE*

After 14 days on Vanco I was feeling much better, I thought I was cured. Unfortunately this morning ( 10 days after taking the last dose I believe) I had severe bloody stools and a lot of pain, went back to the hospital and got diagnosed with c-diff again. I am honestly so bummed out. I want this to be over. It is costing me a fortune and this time I have to be on Vanco for 3 months! I lost so much weight and have no idea how to get it all back with so much food intolerance.

beth22
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Re: Diagnosed with severe c diff infection & shocked

Postby beth22 » Mon Apr 02, 2018 1:11 am

Are you doing a vanco taper? If not, ask your doctor about it. It generally works better.

abroad
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Re: Diagnosed with severe c diff infection & shocked

Postby abroad » Tue Apr 03, 2018 1:36 am

beth22 wrote:
> Are you doing a vanco taper? If not, ask your doctor about it. It
> generally works better.
What is a taper? I think they are gradually making it a stronger/higher dose over the course of three months.


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