Trying to recover from a c. diff infection (Clostridium difficile)

Posted by acres @acres, Apr 12, 2016

I am trying to recover from a c.diff infection. This started with taking clindamycin in mid January and 3 days later I became ill with diarrhea and felt sick, loss of appetite etc...Went to the er twice, tested negative for c.diff on my 2nd visit. The Dr. told me to take imodium to rest my colon since I tested negative. That evening I had diarrhea and took the Imodium. Became constipated with pain lower right side. I went to a GI dr. pleading for help, I did another stool test and it came back positive for c.diff. I tried flagyl but could not tolerate the side effects. Tried vancomycin for 10 days. Did not work. Tested positive again, Went to a new gi doctor who prescribed dificid for ten days. I am 31 days post dificid and I have almost constant gut rumbling and urge to go. My 1st bm in the morning is usually semi normal, but after that they are always either pencil thin and or small pieces (2 to 5 times a day). This has been my routine since the vancomycin. I do not get dull blown diarrhea..... My dr. wants me to have a colonoscopy but I an scared that the cleansing will wipe out all my good flora. I currently take 2 florastor pills and 1/2 vsl3 per day. I eat fermented pickles for the probiotics as well..... I have many food intolerances since this whole mess began (fiber, many vegatables, dairy). I also have a strange taste in my mouth most of the time, have very little energy and fight with depression. My primary gave me Xanax .25 but I only take them at night when I cannot sleep...... Went to a nutritionist who put me on a no wheat, soy, dairy, gluten diet. Does not seem to be helping or hurting. I lost 20 pounds and cannot gain any weight (I weigh 120 at 5'7")... I am thinking it might be sibo, or candida but cannot find a dr. to test for these....I am in the right place for help or advice ? The urge to go is awful and limits my once active lifestyle.....
Thank you, Scott

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kaylasills | @kaylasills | Apr 18 8:13am

I had cdiff in 2017
Took vancomycin of and on for over a year. 2018 had fecal transplant. It changed my life. Had couple bouts after transplant but they were resolved with Vancomycin. Very careful with antibiotics and no cdiff since 2021.

cas924 | @cas924 | Apr 17 10:00am

In reply to @kelygrl67 "Hello everyone, I was just diagnosed with cdif this past Saturday. I got sick about it..." + (show)

Between the antibiotics I took that led to C Diff, the C Diff toxins and Vancomycin that I took to kill the C Diff, it felt like my gut was destroyed. I developed temporary post-infectious IBS, could not eat much, lost 30+ lbs, was malnourished, etc. I found that eating foods on the low FODMAP diet helped a lot while I recovered, as did the probiotics that a Gastro doc recommended: Florastor and Visbiome.

Check out CDiff.org (Peggy Lillis Foundation); The “C Diff Queen” Dr. Sabine Hazan’s book “Let’s Talk Sh!t” and her lab ProgenaBiome.com; and Michelle Moore’s book “C. Difficile Treatments and Remedies” and website C-Difficile-Treatment.com.

I pray you find relief soon.

karel | @karel | Apr 17 7:00am

In reply to @kelygrl67 "Hello everyone, I was just diagnosed with cdif this past Saturday. I got sick about it..." + (show)

I had cdiff for 5 months last year. Antibiotics from having double pneumonia. I was on vancomyin for 8 weeks, than difocid and finally VOWST, the poop pill. You must 2 weeks after you finish the vanco get another stool speciman to make sure you are negative. It is very weakening. After its all over, it could leave you with IBS, however for this I was given imipramine a trycyclic drug used for depression which now is used for ibs.
Just dont push it, rest, I dont know of any dietary info, your gastro doctor maybe able to give you that. I do hope you are better soon.There is a great doctor who is an expert on CDIff. I dont know if you live in NYC. He also has videos on you tube. His name is Dr. Ari Grinspan. feel better soon.

Lisa Lucier, Moderator | @lisalucier | Apr 16 1:35pm

In reply to @kelygrl67 "Hello everyone, I was just diagnosed with cdif this past Saturday. I got sick about it..." + (show)

Hi, @kelygrl67 - sorry that your health challenges did not end with the double ear infection. I had a double ear infection after my underwater scuba diving test, and it was miserable.

Sounds like you are going to get some further information from your doctor on what you should be doing, which is great. Also, here is some information from Mayo Clinic on treatment. Please note especially at the end it talks about fluids, nutrition and probiotics (which is something you mentioned):

- C. difficile infection
https://www.mayoclinic.org/diseases-conditions/c-difficile/diagnosis-treatment/drc-20351697
Do you have any theories on why you start to go downhill after noon?

kelygrl67 | @kelygrl67 | Apr 16 12:40pm

Hello everyone, I was just diagnosed with cdif this past Saturday. I got sick about it 5 days after taking antibiotics for a double ear infection. I am in my late 50’s. I have a few concerns one being that I had gastric bypass 11 years ago and curious how this change in my anatomy may effect this issue. I am currently on vancomycin. And taking a probiotic at bedtime. I usually feel fine in the morning but by noon I start going down hill. I am needing to find dietary information. I realized today that I have been shooting myself in the foot not researching this sooner. I have been doing all the things wrong 😂. I would spy any info I can get and I will be reaching out to my Dr. to see what else I should be doing.

cmlaub | @cmlaub | Mar 20 9:58pm

I took Keflex for a UTI and got C-Diff from it. I took Vancomycin and it did not clear up the infection. It has been a month already. Now I am prescribed Dificid and it is almost $2000! How am I supposed to pay for this desperately needed medication since I'm on Medicare and don't qualify for government help? I am at a loss and after doing lots of research can't find any alternatives. Does anyone know of one?

has319 | @has319 | Dec 29, 2024

In reply to @minge "Did you have C- diff from an antibiotic? If so what antibiotic where you on?" + (show)

Flagyl

juniper2 | @juniper2 | Apr 11, 2024

In reply to @karel "THE DOCTORS AT MT. SINAI IN NY ARE TREATING POST INECTIOUS IBS FROM CDIFF WITH TOFRANIL-IMIPRAMINE,..." + (show)

Thanks!

karel | @karel | Apr 10, 2024

In reply to @juniper2 "I meant, I’m with you." + (show)

THE DOCTORS AT MT. SINAI IN NY ARE TREATING POST INECTIOUS IBS FROM CDIFF WITH TOFRANIL-IMIPRAMINE, TRYCLIC DRUG . OFF LABEL. A SMALL DOSE. I HAD CDIFF SINCE DECEMBER, AFTER 8 WEEKS OF VANCO, 2 WEEKS OF DIICID THE ONLY THING THAT HELPED WAS VOWST(THE POOP PILL) BUT NOW IM LEFT WITH TERRIBLE CRAMPING UNDER THE BOTTOM OF STOMACH. I DID TRY THE TOFRANIL FOR ONLY 3 DAYS,10MG. AT NIGHT, BUT IT GAVE ME INSOMNIA THAT NIGHT. IT DID HELP THOUGH, IM GOING TO TRY IT AGAIN AND STAY ON IT FOR A COUPLE OF WEEKS.CDIFF IS AWFUL. MY PRAYERS ARE WITH YOU.THERE IS A DOCTOR IN MT. SINAI HOSPITAL IN NY. DR. ARI GRINSPAN, HE IS THE EXPERT OF CDIFF- YOU CAN LISTEN TO HIS PODCAST ON YOU TUBE.