C-Diff positive

Last night, I looked in my medicine cabinet because I was trying to remember which antibiotic eventually worked for my campylobacter, and I found my almost-empty vancomycin bottle (I took my entire course as prescribed but had 3 extra pills for some reason; I remember the antibiotic making me feel ill). The dose I took was 125 mg every 6 hours (so 4 times a day which equals 500 mg total). What dose were you guys started on if what I took is the "high-dose?"

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35 years old; diagnosed UC March 2007 (couldn't get scope all the way thru).
9-29-16: chronic and active proctosigmoiditis (infectious cause). Battled reoccuring campylobacter & c diff. Oct-Dec 2016. Remission since 12/25/16 until I started smoking again in 2018 after 9 yrs quit. Re-quit smoking. Maintenance: Delzicol, 6, 2xday; Rowasa nightly. Started Remicade 7/25/19. 50 mg pred 10/29/19.

Sarah I was taking the 125mg every six hours. Now I am taking 500mg! I don’t feel sick at all but also taking probiotics. Nervous this high of a dose will kill all things good and heading into stomach virus and cold season. Also wondering if I should get a flu shot or wait...asked my doc but she didn’t respond. Thankful the 500mg isn’t making me sick and I am getting my energy back!

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Officially Diagnosed with UC in June 2003. Have had stomach issues since 1989. Unknown if they are related or not. Have mild/moderate UC. Have had 6 flares, the last one caused by giving birth. Currently back in remission! Only taking 6 Asacol a day. Will take Rowasa enemas as needed. Colozal did not work for me. Luckily my UC is relatively minor and responds well to meds, but man do those flares hurt!

Oh I see. I thought you meant 500 mg per day. That IS a high dose then! Lol. I'm sure it is killing all things good but you have no other option. I got a flu shot this year, mostly because I'm on Remicade.

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35 years old; diagnosed UC March 2007 (couldn't get scope all the way thru).
9-29-16: chronic and active proctosigmoiditis (infectious cause). Battled reoccuring campylobacter & c diff. Oct-Dec 2016. Remission since 12/25/16 until I started smoking again in 2018 after 9 yrs quit. Re-quit smoking. Maintenance: Delzicol, 6, 2xday; Rowasa nightly. Started Remicade 7/25/19. 50 mg pred 10/29/19.

So my daughter ended up in the ER on Saturday morning. They said that they have had 3 cases of c-diff that week! I didn't go with her as I was so scared of reintroducing it to me. So sad to not be there for her... I made my husband and her take off their clothes in the garage and shower right away. He set something down on the kitchen counter and I immediately took out my bleach. Is anyone else freaked out to get it again? I am not a paranoid person but seriously feel scared from my experience. I am done with my last doses tomorrow and am so scared that it is going to come back!!!

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Officially Diagnosed with UC in June 2003. Have had stomach issues since 1989. Unknown if they are related or not. Have mild/moderate UC. Have had 6 flares, the last one caused by giving birth. Currently back in remission! Only taking 6 Asacol a day. Will take Rowasa enemas as needed. Colozal did not work for me. Luckily my UC is relatively minor and responds well to meds, but man do those flares hurt!

LOL Yup, I too am still bleaching everything in sight....except my wifes clothes.LOL I went to my gastro doc last Friday and dropped off a stool sample for his lab Monday. HOPEFULLY....I'm all clear. I was taking 250mg of Vanco. and finished it about three weeks ago. Seem to be free of it now...time shall tell. It took two rounds of Vanco for me and my doc said that c. diff is becoming more and more resistant to antibiotics. Pretty scary for the future! I too, am very careful after hospital visits...infusions...As soon as I get home, I fling my clothes into the washer with bleach, clean my vehicle steering wheel, gear shifter, and everything else I touch with 10% bleach. I'm a real germophobic for now, but it's worth it to prevent my spreading it to anyone else. Best of luck to everyone. C. Diff was a journey I certainly don't wish to take again!!!

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diagnosed in 1997. meds: Entyvio, Mesalamine-800mg. 3x a day,Hyoscyamine sulfate odt 0.125 4-6 hours as needed,Omeprazole 40mg 1 capsule a day,Latanoprost op 0.005% 1 drop each eye, Amlodipine Besylante, vancomycin, Sucralfate, Cholestyramine powder drink mix.

I'm so sorry. You might have to try Dificid. Did you tell your doctor?

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35 yrs old; dxd UC March '07 (couldn't get scope all the way thru). 9-29-16: chronic & active proctosigmoiditis (infectious cause). Reoccuring campylobacter & c diff. Oct-Dec '16. Remission 12/25/16 until started smoking again in 2018 after 9 yrs quit. Delzicol, 6, 2xday; Rowasa. Remicade 7/25/19 (worked 2 mos). 50 mg pred 10/29/19 (Tapering:40 mg 11-18-19). Began Humira & Imuran (150 mg) 11-16-19

OK, so she is telling me to do a taper with cydromycin I guess so that it is in my system for longer but less over time? If that doesn't work then fecal transplant, but she gave me the warnings for that and it scares me!!!

The taper I recommended, which is actually what I would do first.
125 mg 4 times daily for 1 week
125 mg 3 times daily for 1 week
125 mg 2 times daily for 1 week
125 mg 1 time daily for 1 week

Then stop. If symptoms recur and we document c. Dificile, then I would recommend a stool transplant


potential risks associated with FMT therapy. FMT has been documented in patients with IBD who have had recurrent c diff and the majority of these cases have tolerated the therapy well but there have been some reports of flare up of IBD following FMT. Approximately 20% of patients undergoing FMT will have temporary symptoms of bloating and change in bowel habit. This usually resolves within days of the procedure. The risk for infectious complication is considered to be low because of the extensive screening of donors but it is still a consideration when transferring bodily fluids. Finally, in a follow-up of 77 patients who underwent FMT for c diff, 4 patients were found to have developed a new autoimmune disease within 1 year of FMT (Brandt AJG 2013). While the potential for developing a new autoimmune disease with FMT has not been established, this study raises concern for this possibility and this patient was made aware of this concern.

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Officially Diagnosed with UC in June 2003. Have had stomach issues since 1989. Unknown if they are related or not. Have mild/moderate UC. Have had 6 flares, the last one caused by giving birth. Currently back in remission! Only taking 6 Asacol a day. Will take Rowasa enemas as needed. Colozal did not work for me. Luckily my UC is relatively minor and responds well to meds, but man do those flares hurt!

Thanks Sara. I have never been so scared to not get better in my life. I have had UC flares for months and months and months, but this is so different. My energy is already zapped. I already did 2 rounds of 125 and then 10 days of 500. I don't know why she isn't recommending anything new... I asked her that questions in my email response. I'm assuming the data doesn't show a great success rate with other antibiotics.

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Officially Diagnosed with UC in June 2003. Have had stomach issues since 1989. Unknown if they are related or not. Have mild/moderate UC. Have had 6 flares, the last one caused by giving birth. Currently back in remission! Only taking 6 Asacol a day. Will take Rowasa enemas as needed. Colozal did not work for me. Luckily my UC is relatively minor and responds well to meds, but man do those flares hurt!

This was her response to my question if we should try a different antibiotic:

I actually think you need an FMT, that means a colonoscopy with placement of stool from a healthy donor into your system. If you are ok with that, we can schedule soon. Until then do the taper.

I am so very discouraged. I just had a colonoscopy in October and I really don't even know how I am going to handle another one. I get major anxiety from them. I am in a pit of despair.

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Officially Diagnosed with UC in June 2003. Have had stomach issues since 1989. Unknown if they are related or not. Have mild/moderate UC. Have had 6 flares, the last one caused by giving birth. Currently back in remission! Only taking 6 Asacol a day. Will take Rowasa enemas as needed. Colozal did not work for me. Luckily my UC is relatively minor and responds well to meds, but man do those flares hurt!

Did your daughter have c diff when she went to the ER? If so, you may have gotten re-infected from her.

What is cydromycin? I couldn't find anything when I googled.

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60 yo female diagnosed w/UC to mid transverse 1/1/13, now UC or Crohn's colitis. Remission on Entyvio 10/2016-12/2017 before losing response. Had response to Humira with loading doses in Nov 2018, but then lost response. Current meds: Remicade 3/15/19, Asacol HD 2 Tabs 3x/day, Capozide 1/day (hypertension). Dexilant.

My doc wants me to check myself into the hospital on Sunday so I can be evaluated and likely FMT on Monday. I can’t believe this is where I am now.

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Officially Diagnosed with UC in June 2003. Have had stomach issues since 1989. Unknown if they are related or not. Have mild/moderate UC. Have had 6 flares, the last one caused by giving birth. Currently back in remission! Only taking 6 Asacol a day. Will take Rowasa enemas as needed. Colozal did not work for me. Luckily my UC is relatively minor and responds well to meds, but man do those flares hurt!

Jen, try not to let the fecal transplant scare you. They need to give you those warnings because it's not FDA approved and because you're being exposed to a human "product". When pharmaceutical companies aren't paying for the research studies, it's naturally going to take longer for an alternative treatment like this to get accepted by Western medicine. They do heavy screenings on the donors and stool just like when people donate blood, so it is quite safe, but of course there will always be a risk. I would be ecstatic if my doctor suggested a fecal transplant for me. I literally had to beg my doctor to do it, and it was the best thing that ever happened to me and was the only reason I was able to avoid surgery and get out of the hospital.

I had a fecal transplant for my C. diff on day 54 of my HOSPITALIZATION (I had already been sick for 3 weeks prior to the hospitalization. I failed vancomycin three times, Dificid once, and IV metronidazole once), and if I had a say in the future, I would do the fecal transplant on day 1 if I could. Instead of thinking of it as icky poop, think of it as nature's probiotic... you will literally be getting thousands of beneficial bacteria introduced into your gut, many of which can't be grown in a lab... and I would take that any day over any antibiotic. I didn't have any cramping or side effects from the fecal transplant, and within a few days I was already noticing a significant improvement in my symptoms. To this day, I continue to feel great, and my stool is more solid than it has been in ten years. I actually have to push sometimes which is a foreign concept to me!

I'm sorry you are going through this, and I hope whatever treatment they decide to do ends up working for you.

I was in the hospital for two more weeks after the FMT, but that was because they were having trouble transitioning me from IV to oral steroids. It had nothing to do with the fecal transplant. In your case, I imagine they would have you out in a day or two. I don't think it's unreasonable to request an anti-anxiety medication, and I would hope they would respect your wishes in that regard, especially if it would help you get through the procedure.

I know what you are saying about the hospital seeming too severe. Even when I got admitted, I didn't think I needed to be in the hospital. The only reason I went was because I was continuing to lose weight and had hit 100 pounds which was my cut-off. I didn't go because of the symptoms, I went because I couldn't maintain my weight and because my body was wasting away.

I get what you're saying about feeling like FMT is too drastic of a next step. I don't think it's unreasonable to try Dificid since it has been shown to be slightly more effective than Vancomycin if I remember correctly. The other antibiotic, metronidazole, is not a miracle drug, but I think the Dificid is certainly worth trying if you are more comfortable with that. I personally would go with the fecal transplant, but that's because I already know that the Dificid didn't work for me.

Keep us updated on everything. It sucks to be feeling the way you are, and it's time to get better!