C diff Free after Dificid & how I healed my gut

We spend a lot of time talking about the bad news in this discussion group - here's the spot for the good news. If you've had c-diff and are now well, please tell us about it here.
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C diff Free after Dificid & how I healed my gut

Postby KFM » Wed Sep 18, 2019 6:52 pm

I am now four months C diff free, and I want to share my story in case it might help someone out there.

In January, 2019, my appendix ruptured. I was misdiagnosed (and thus untreated) for two weeks, and this led to a major intestinal infection that required a 5-week course of antibiotics, and then surgery to remove my appendix. Two and a half weeks after surgery, I got C diff.

I was treated with Vanco (125mg, 4x/day) for 14 days, and then relapsed after 3 days. I was treated again with Vanco for 14 more days, and then started on a taper, and relapsed three days into the taper (while still on Vanco, but only on 3x/day). I was desperate and asked my doc to let me try Dificid. He was hesitant at first because he knew it would be hard to get the insurance to pay for it, but he agreed and we had to get a pre-approval (it was $5,000 for 20 pills.) After 10 days, I was approved (insurance companies suck) and then I was on Dificid for 10 days, 2 pills a day. My next step was a FMT, but the Dificid cured me. I was tested two months later (upon my request) and it came back with a negative PCR. In August, I had a colonoscopy and the doc said there was no evidence I'd ever been sick. Pretty good news. Now I'm 4 months out and symptom-free.

I want to share a few things.

First about Dificid:
1 - Many on this forum have said it only works if you take it as the first line of defense. I took it as the third line of defense and it worked. So please do try it, if the Vanco isn't working for you. It can work!
2 - If you can't get it approved by insurance, go to Merck's website and see if you are eligible for a coupon. If you are, it can save you several thousand dollars. Here is the link: https://www.merckconnect.com/dificid/co ... s-samples/
3 - My gut was still a mess for a while after Dificid. I even thought I was relapsing a few times, but I wasn't. It does work, but it takes time for your gut to fully restore itself. This is pretty common so don't lose hope.

Also, a few other things I did, which I believe helped with my beating this thing.
1 - From the time I got C diff until the time I got a negative PCR (about 4 months altogether), I did not eat out at all. I cooked all of my own food and made sure it was all well-cooked and not contaminated. C diff is everywhere. If you are battling it or in remission, remember your gut flora is compromised and it is very easy to pick up C diff or another intestinal infection. This may sound extreme - not eating out - but I believe it helped me.
2 - I ate a very simple and clean diet that consisted of mostly very cooked root veggies (like yams, sweet potatoes, winter squash, and carrots), protein sources like eggs and fish, and sauerkraut of various kinds. (I was eating a lot of carby things like white rice and bread, at first, because that's what they suggest, but then I stopped when I wasn't getting better and switched to the diet above and only some black rice, which has a lower glycemic index than white rice and bread. I didn't want to compromise my system with unneeded sugar.) I ate very little else. No dairy, wheat, processed sugar, coffee, or alcohol. Lots of people say it doesn't matter what you eat, but it does. It may or may not affect the C Diff - I'll never know - but it does play into your healing process with Post-infectious IBS. Eat carefully!
3 - I took oral probiotics of varying kinds and didn't find them particularly helpful. However, I was advised to do probiotic retention enemas. And they helped! I know it doesn't sound pleasant, but I highly recommend these. It places the probiotics directly in your colon. You can buy an enema kit online for $25 through Amazon, and use a powder from Natren Probiotic. For more specific instructions on how to do it, you can call Natren, and they will talk you through it. This is the powder I used: https://www.natren.com/collections/prob ... o-factor-1.
4 - I took PREBIOTIC FIBER. This is so important. You need prebiotic fiber to feed the probiotics. I took Benefiber daily in a smoothie, along with pea protein milk, hemp powder, a half of a banana, cacao nibs (not sweetened!), and a chicory-based coffee substitute called Rasa (which is also high in prebiotic fiber). It was delicious and really helped heal my gut after the Dificid. Eat prebiotics!

I did have post-IBS for a bit, but now I'm eating everything I was eating before. (However, I did not go back to coffee and I never really drank alcohol in the first place.) I am still dealing with some emotional stress from the 6-month ordeal, but working through it slowly. I gained most of my weight back.

I am very grateful for everyone on this site who offered me encouragement and wisdom when I was so very sick. Thank you. You are a dedicated bunch and you were a lifeline when I could barely get off the sofa.

If you're reading this and still dealing with C diff, have faith - you can beat this! Everyone is different but don't be afraid to try things out to figure out what will cure you. Sending you healing thoughts. - Karen

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Re: C diff Free after Dificid & how I healed my gut

Postby beth22 » Thu Sep 19, 2019 12:18 am

Thank you for posting. Hopefully, this will give other people some hope. Glad you are doing better.

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Re: C diff Free after Dificid & how I healed my gut

Postby KFM » Sat Sep 21, 2019 9:13 am

Thank you, Beth. And thanks for being part of this group!

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Re: C diff Free after Dificid & how I healed my gut

Postby momo123 » Sun Sep 22, 2019 8:38 pm

Thank you so much for posting this... my story was kinda similar ... dificid was my 3rd like as well and I am now 3 months to the day post cdiff. So i am praying that monster never returns !!!

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Re: C diff Free after Dificid & how I healed my gut

Postby Bobbie » Thu Sep 26, 2019 1:14 pm

Congrats on your success.

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Re: C diff Free after Dificid & how I healed my gut

Postby Ali-Mar » Thu May 21, 2020 10:57 am

KFM, thanks for sharing your story, it gave me a lot of hope. I took Flagyl, and then Vanco. I replaed 5 weeks post Vanco and now I am taking Dificid taper.

Finished the regular 10-day dose 2 pill/day on May 6 (two weeks ago) and now I am taking 1 pill every other day. I am constantly worry that it might not work. I hope I will feel little safer when i get to 6 weeks post the 10-days regular dose
Male 54, 1st time contracted C-Diff Infection on Feb 5, 2020, diagnosed on March 2nd using Toxin B Gene PCR test
Took Flagyl for 8 days, Vanco for 10 days, relapsed 4.5 weeks post-Vanco. finished Dificid Taper on June 20

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