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C Diff
I first got sick on May 1st thinking it was the stomach flu. I weight 157lbs and every er that I went to told me to sleep it off and that the longest it could last is two weeks. Two weeks later no difference. I finally saw a gastroenterolgist sometime in June. At that point it was 1 month of no appetite, nausea and diarrhea with tons of mucus(sorry to be so graphic). I did a stool test and he said I had inflammation somewhere and to eat bland and it would go away. It didn't so finally he said I could have Giardia due to having yellow poop since march 🙁 so he put me on flagyl and ciprofloxacin. I guess I put all my eggs in one basket and hoped and prayed that would be it. I started feeling better until one day after I ate I had the urge to throw up. No nausea or anything. Finally had a colonoscopy on June 19th. Got diagnosed with C. Diff colitis. He put me on flagyl three times a day for two weeks. I had my good days and bad days. Fourth of july came around I had a hot dog and pasta salad and that's the last day I ate something delicious. Since that day I've felt horrible. I finished my antibiotics that Saturday and I've become worse. All I taste is blood now. Anything I drink makes me want to throw up. I have to sleep sitting straight up :(. I'm miserable and I currently weight less than 120. So to go from 157-120 in a matter of two to three months is taking its toll on my body. I'm losing hope. I'm 22 years old and Monday April 30th was the last time I was actually happy. If anyone has information or anything to help me please respond. I know I could have something way worse but to go from being perfectly healthy to being labeled anorexic because you want to eat but you can't is really hard. I'd love to hear other peoples stories on this horrible infection.
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Many people are interested in fecal transplants which seem to work very well. There is now a new FDA approved medicine called VOWST. This is made from fecal matter. Vowst is not a cure; it is designed to prevent a re occurrence of c diff. It has a 88% success rate. After a course of vancomycin, you take 4 pills first thing in the am; 3 days in a row.
I am currently taking the pills and will finish tomorrow. Time will tell,
check it out, they have a web site. ww.vowst.com
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2 ReactionsI’ve been battling cdiff since July 2024 after a hospital stay for diverticulitis with a perforation and large infected pocket. I’ve been on flagyl, vancomycin, and difficid. This is my fourth round of the Vanco already tried two 10-14 day doses and a six week tapered dose. Unfortunately difficid didn’t resolve it so now I’m on a 10-week vanco taper. I’ve tried a variety of probiotics and some prebiotics including the S Boulardi recommended on another Mayo chat. I was taking a number of supplements to improv the gut microbiome and my GI doc had me go off of them as she wasn’t sure if they are causing the vanco not to work as well. I’ve been eating a limited diet for months mainly liquids, mashed potatoes, eggs, canned or boiled fresh ground chicken, and rice.
My GI doc said they don’t do fecal transplants anymore unless you’re gravely ill and ICU bound. Perhaps there aren’t enough transplants available but waiting until someone gets sepsis or other serious complications doesn’t seem the best medical approach.
Does anyone have other recommendations to try and rid myself of this horrible infection? I’ve been mainly at home for months given the symptoms and being contagious. My daughter has surgery in March I really need to be there for her and can’t right now.
Thanks for any advice much appreciated.
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2 ReactionsI found very helpful information on the cdiff.org website. Where are you located? The last time I checked (August 2024) my gastro doc does FMT (Tampa, FL). I thought the standard was after a couple recurrent infections FMT was warranted. Which supplements were you taking that you stopped?
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2 ReactionsI have had recurrent C Diff in 2024. I am scheduled for an infusion of Bezlotoxumab i a week to help prevent further C Diff infections. Please ask your MD if this is an option for you.
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2 ReactionsFrom what my local GI’s told me it used to be available for recurring infections like mine but there was a change in the last few months or so where you have to be nearly sick enough to be in the ICU to qualify, I’m in Green Bay WI. Thanks for the website link I’ll check it out.
Thanks for your reply is this something you can get while you have an active infection and have you tried it before? I added to my list for the doc appreciate the tip! Good luck I hope it resolves your cdiff. ❤️🙏🏻
I also failed vancomycin (including a long taper) and difficid with repeat occurrences of c diff.
I was temporarily in Texas going to a GI at Houston Methodist when I had a severe case following a hip replacement. In discussing in summer 2022 what to do if there was another recurrence, that GI was going to use Zinplava. She said she didn't think anyone at HM was doing fecal matter transplants (FMT) because the banks of Fecal matter were pretty much shut down during covid.
But when I returned to AZ and discussed this with my Mayo GI in Oct 2022, he dismissed Zinplava and reiterated advice I was given in 2020 to use a FMT. I had a total procto-colectomy in 2023, so from my perspective the issue became academic.
However the current Mayo web site includes discussion of FMT as a treatment (9/2013 page date) with a link to a video (5/2016 page date) that references the criterion 3 c diff occurrences that did not respond to regular treatment as one option.
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C. difficile infection - Diagnosis and treatment - Mayo Clinic
https://www.mayoclinic.org/diseases-conditions/c-difficile/diagnosis-treatment/drc-20351697
Fecal transplant treatment of C. difficile at Mayo Clinic - Mayo Clinic
https://www.mayoclinic.org/diseases-conditions/c-difficile/multimedia/c-difficile-treatment-fecal-transplant-video/vid-20203002
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In checking further I found that the American Gastroenterological Association (AGA) issued guidelines in 2024 that are probably the source of comments noted above about criteria for FMT.
Note that they distinguish between patients who are not immunocompromised, those who are mildly or moderately immunocompromised, and those who are severely compromised
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AGA Clinical Practice Guideline on Fecal Microbiota–Based Therapies for Select Gastrointestinal Diseases - Gastroenterology
https://www.gastrojournal.org/article/S0016-5085(24)00041-6/fulltext
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It seems to me that a FMT is worth checking out and the first step is to find GIs/medical groups who perform any FMTs. Then check what criteria they use and what it takes to qualify.
Good luck in finding a solution. C diff is a nasty disease.
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2 ReactionsMy 84 year old aunt could get well from c-diff. I gave her something my MD recommended and it cured it (after prescriptions didn't). Then she had a different problem (but the same diarrhea) years later and it cured it again.
MEGASporeBiotic. Seems well regarded. Sold on Amazon. May be worth a try:
https://www.amazon.com/gp/product/B07TJ4TH8Q/ref=ppx_yo_dt_b_search_asin_title?ie=UTF8&th=1
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2 ReactionsThank you for the tip looks like targeted list of probiotics in spore fomat which is interesting worth a try. Appreciate the info!
Thank you for the helpful info. My local GI doesn’t reference any criteria except bloodwork. I have autoimmune disorders and other health conditions that may qualify me for the transplant in addition to exhausting all known antibiotics. I’m waiting to hear from Mayo to set up an apt praying they will be able to offer new options and relief including the FMT but also confirming if there is something else going on causing it not to heal. I really appreciate the help!