Living with High-Risk C-Diff and Preventing Re-Infection

I have recovered from my 1st bout with C Diff (7/2024) which I contracted while in the hospital following appendectomy and received 2 additional bags of broad spectrum antibiotic IN ERROR (confirmed) before being discharged. Prior to C Diff I had frequent UTI’s, resistant to Macrobid of course (low risk of C Diff). I know I am a ticking time bomb because I will probably have more UTI’s which require strong antibiotics- and C Diff will rear its ugly head again. I do the following to try to avoid UTI’s:
Drink 95 ounces of water per day; No caffeine, no carbonated beverages; visit bathroom often to pee (don’t hold it); take the powder version of D Mannose (not capsules); take Theracran supplement; take probiotic L. Crispatus (Culturelle); shower after BM, shower before and after “relations” with husband; AVOID ANTIHISTIMES AND ALBUTEROL INHALERS if possible. (Seriously, look up “antihistamine use and asthma inhaler use” and their connection to UTI’s. I was shocked.) I have friends who have had their urethra’s stretched and that ended their UTI hell. I will discuss this with my Uro-gyno next month. I have also been told that vaginal hormone cream can help with this situation.

My gastro doc said to contact him if I am ever in the hospital or being prescribed an antibiotic for him to decide if he will prescribe a C Diff medication to take with the other prescribed medication. I have heard that Vancomycin wipes out good bacteria as well as C Diff, which lead to post infectious IBS and a loss of approx 35 lbs for me. I would rather try Dificid next time which is supposed to spare the good bacteria.

Also, Dr. Sabine Hazan has a lab that conducts research on microbiome. Check out ProgenaBiome.com and read her book “Let’s Talk Sh!t” by Dr. Sabine Hazan. Lots of info on C Diff in there.

Also visit: CDiff.org (Peggy Lillis foundation). Lots of C Diff info there too.

Sorry if I’m repeating myself from a precious comment, but this is what I am doing to avoid UTI’s:

1. Drink approx 95 ounces water, no caffeine, no carbonated beverages, no alcohol.
2. Pee often - no “holding it”.
3. Supplement with D. Mannose powder (not capsules), Theracran and Cultarelle (L. Crispatus).
4. Avoid antihistamines and asthma inhalers (albuterol) as much as possible. Look up the connection between those things and UTI’s. I was shocked.
5. Shower after BM, shower before and after “relations” with husband.”

I will see my uro-gyno doc next month and will ask about 1. Stretching the urethra (has worked for friends of mine) and 2. Vaginal hormone cream. Apparently as women age things atrophy down there making us more susceptible to UTI’s. Yay.

My gastro doc told me that since the FDA has approved Rybiota (approx 50% cure rate), it’s harder for some people to get approved for the FMT. I’ve heard on this platform that some folks have to be at death’s door in ICU to get FMT approved.

I took vancomycin when I was diagnosed. It did take care of the infection, but killed what little good microbiome I had left in my gut. Then I had post infectious IBS, could not eat much and lost ~35 lbs. Discovering the low FODMAP diet helped somewhat. Finally a great doctor recommended taking high potency probiotics (ProBio Med or Visbiome and Florastor) which turned everything around for me within a couple days. If I have to play this horrible game again, I will be taking those probiotics while I take the C Diff antibiotic (separated by 4-6 hours so antibiotic doesn’t kill probiotic).

And I have also heard about taking the vancomycin at the same time as the UTI antibiotic. Some docs will, some won’t.

@cas924 I also heard on this website that fmt's weren't happening anymore. I blame the pharmaceutical companies for that! Every time someone got the fmt, they didn't need vancomycin or any other medication. It's all about the MONEY!!

Yes this website is where I first heard about the difficulty lately in getting the FMTs, then my doctor confirmed it. It helped my fear of subsequent C Diff infections to know that an FMT could be a possible solution, but now knowing that the FDA is playing games due to less effective things being approved ($$$), my anxiety level has gone through the roof. It should be MY decision.

@cas924 I completely agree with you and hope you are able to get an fmt. Please keep me posted.

Does anyone have Valley Fever?

I just had cdiff too and I live in fear of re-occurence. I am currently recovering and it's pretty awful too. Will be glad when this parts completes ..I sometimes feel I will always be suffering.

I am also suffering the after effects of C diff. I haven't been normal for months. I'm so worried this will be my new normal. I'm turning to functional medicine at a Wellness Center.