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Living with High-Risk C-Diff and Preventing Re-Infection
Infectious Diseases | Last Active: Mar 15 12:36pm | Replies (40)Comment receiving replies
Hello, Renee. I'm Barbara. May I share my experience of c. dif with you. It all seemed to have begun with UTIs treated with antibiotics to the point that after fosfomycin I developed c. dif. I did take vancomycin but it recurred. My urologist claimed that a pessary was not being changed often enough; urology had a protocol for once a month and the gynecologist's office for every 12 weeks. The gynecologist has agreed to change the pessary every six weeks, and the urologist to not treat me with antibiotics unless necessary. After getting my last booster I ended up in the ER a second time with severe stomach pain; I was diagnosed with diverticulitis. The same medicine, Dificid, was first choice and this time I spent the $l,200 with Medicare D to purchase that prescription. It worked very well; yesterday I saw the digestive health PA who gave me some diets to study and follow. I learned two things: that a trauma l center can get lab results on c. dif within an evening, and that one can have in place an application with Merck for complimentary purchase of Dificid. I was advised by the digestive health PA that next time I require an antibiotic to ask the urologist to prescribe vancomycin along with the antibiotic for a UTI. I hope some part of this labored story may be relevant and helpful to you. It was a very challenging time, and I lost 15 pounds in the process. I hope we both can avoid a recurrence of it!
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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.