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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@mala1921

Hello,

I was on Clin 150mg twice a day for tooth infection. Ten days after stopping the antibiotics I have developed severe stomach cramps, loose stool and etc. GI suspected and tested me for C-Diff. He has put me on Flagyl 500mg three times a day along with probiotcs. I would love to hear some feedback if you have been on Flagyl and if it worked and how quickly it worked. Everything that I've read is just so scary it's literally giving me anxiety. Thank you so much.

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@mala1921 I too took clindamycin for a tooth infection back in August, 2018. Three weeks later I ended up in the hospital for 8 days. Agony! They gave me vancomycin but I relapsed 4 times over the next 7 months. Lost 14 pounds and weighed 86 pounds. Finally, I had an fmt (fecal microbiome transplant) in March, 2019. Since then, I have been doing ok. However, I still can't gain any weight back! I live in terror of it coming back or if I get sick and need any antibiotics. A lot of antibiotics can start it back up. I take probiotics every day, specifically, Visbiome and saccharomyces boulardii. If you have any questions, let me know. Good luck to you! Hope you feel better soon.

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@mala1921

Hello,

I was on Clin 150mg twice a day for tooth infection. Ten days after stopping the antibiotics I have developed severe stomach cramps, loose stool and etc. GI suspected and tested me for C-Diff. He has put me on Flagyl 500mg three times a day along with probiotcs. I would love to hear some feedback if you have been on Flagyl and if it worked and how quickly it worked. Everything that I've read is just so scary it's literally giving me anxiety. Thank you so much.

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I took Clindamycin for a sinus infection in 2018. Shortly after taking it, I ended up with Cdiff. I've never been so sick. I was given Flaygl for the first infection. After stopping it, three weeks later Cdiff was back. I then was given Vancomycin (Vanco) for 10 days. Again, the Cdiff returned after a few weeks, I then did the Vanco pulse and tapper method for over a month. After completing that, I was okay for about a month. But then I had a 4th bout of Cdiff. My gastroenterologist said he would prescribe Fidaxamycin (Difficid). It's expensive. $7,000 for 20 pills and the co-pay was almost $1,000. But it worked. My insurance wasn't willing to pay until I had tried Vanco. I wish medical providers would prescribe Difficid after a second round of Cdiff. And many physicians are not even using Flaygl as the first line of defense any longer. They're going right to Vanco. I also know that many dental offices are no longer prescribing Clindaymcin for infections. The rate of Cdiff is peaking after using it. I hope this info is helpful to you. If the Flagyl doesn't work, I would suggest you talk to your physician about Difficid. If it hadn't worked for me, I was going to do a fecal transplant. Just happy it happened to be the one to kill all the Cdiff spores.

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@pines - I agree that Clindamycin should not be given for dental infections. If someone has penicillin allergy there are other antibiotics less risky than clindamycin.

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@colleenyoung

Hi @mala1921 and welcome to Mayo Clinic Connect. You'll notice that I moved your message to this existing discussion called "Trying to recover from a c. diff infection (Clostridium difficile)." I did this to better connect you with other members talking about C-diff like @sandyabbey @pines @virgo1952 @femalegolfer @ngorman25 @pibacher and others.

You may also be interested in this discussion where several members talk about taking Flagyl.
- C. difficile – Are your guts ever normal again? https://connect.mayoclinic.org/discussion/c-difficile-are-your-guts-ever-normal-again/

Mala, How long have you been taking Flaygl? How is it working for you?

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After taking clindamycin for a dental procedure, my husband had a six month bout with c diff many years ago. After multiple courses of antibiotics and reactions to them, he put his foot down and refused to take any more. Finally, the GI doctor prescribed Questran, an anti-cholesterol drug that coincidentally binds matter in the intestines. Finally, after two weeks of Questran, he could live a normal life again. Sadly, his gut still reacts negatively to anything that disrupts the normal flora. He relies on kefir and other probiotics.
I haven’t read anything about Questran on these threads, but maybe it can help someone else.

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@concernedmtnmom

Hi, @acres, I'm so sorry for all you are going through. C. Diff. is notoriously difficult to get rid of and can persist through many treatments. Most people get it from a round of the antibiotics that end with -mycin, and Clindamycin in the worst offender. Flagyl and Vancomycin are horrible Rxs, but they can work (they probably gave you that weird taste in your mouth, but that could also be undigested food or activity in your gut doing that). If they DON'T work, however, you can try Rifaximin. Rifaximin has no side effects and makes you feel human again, and works well. Keep taking the Florastor, but take the max dosage. It is the probiotic yeast S. Boulardii and it kills C.Diff. and you can take it while on treatment because it's a yeast, so antibiotics don't kill it.

And the VSL3 can help restore other Flora killed by the antibiotics, but you need at least 3-4 pills/day. I don't know that taking them with Rifaximin will help, as they will be killed off by the mediciine, but right after you finish treatment, you need to load up your system with probiotics and VSL helps. Other natural sources include kefir (if you have dairy issues you can find a non-dairy one), Mountain High or Chobani yoghurt (not all yogurts have probiotics in them, but these two do...MHY has less sugar). A nutritionist can help you with finding other natural sources.

I had a family member with C. Diff. We went through it 4 times and Rifaximin helped the most--it was wonderful. It made a huge difference. A Mayo doc who gave us the Rx that took a while to get filled because it was tough to find and it was an off-label use, so try that but be prepared to persist.

Another approach is to taper off Vanco by skipping doses for a day or two to let the spores grow, then killing them off with the next dose. I wouldn't try that without a doc's supervision.

You must persist in finding relief, as gut infections are tough to conquer. There is a radical treatment called fecal transplant that is a miracle cure. Research that. there's a doctor in Canada who makes pills for this, I'll try to find his name in my notes later this week. If you can get treatment at Mayo, they are the best docs. You need support as losing weight and suffering is not an option. Good luck!

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Hi, did you find that doctor in Canada that does the fecal implant by pills??

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@tammy1pike

My 16 year old son needs help. He was diagnosed with C Diff Infection after taking Clindamycin. In about 6 weeks he has lost nearly 30 lbs. His Gastro Doctor prescribed Flagyl to treat C Diff but it had horrible side effects. After finishing his Flagyl we started him on Phillips Brand Probiotics. His diarrhea has started back. He is depressed. He has no appetite still. Please give us advice. I’m familiar with other antibiotics to treat C Diff and I’m familiar with fecal transfer. We are in Central Alabama and have been to hospitals 3 times. They just send him home. We have seen a Gastro Doctor. He is not concerned. My son is very sick. Any advice?

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Don't take no for an answer. Flagyl is horrible, it's a cheap drug, that's why they prescribed it so much. My platelets bottomed out on it. Have blood work done on him, check his platelets. Vancomycin is better. Definitely take S. BOULARDII, it's a game changer.in canada we have Florastor and Renewel..

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I had c-dif for the first time in 2019 and was a wreck. My GI Dr put me on vancomycin and it cleared up the c-dif. MovIng on to this year. Three weeks ago I got my second bout of diverticulitis within the past 4 1/2 months. They put me on augmentin and now I have c-dif again. My colonoscopy in Jan showed I had a tortuous colon and the GI dr couldn’t do the full colonoscopy and I wound up also having a virtual colonoscopy. Bottom line is that I’m an anxious wreck. Any health related thing sends me down the rabbit hole. I see a psychiatrist but I’m too afraid to take the meds he prescribes. I’ll be 64 next month and never thought I’d wind up like this. It’s bad enough the c-dif sends me to the bathroom, but I also have BMs related to the anxiety. My GI Dr has me on vancomycin. I can’t remember if it gave me as my side effects two years ago, but I’ve been on it for a couple of days and feel a little jittery/weird. Don’t know if it’s the vancomycin or just me being crazy anxious. Has anyone had this side effect or what side effects have you had? Also, what routine do you use to make sure your bathroom and house stay free of c-did?

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@judy75

I had c-dif for the first time in 2019 and was a wreck. My GI Dr put me on vancomycin and it cleared up the c-dif. MovIng on to this year. Three weeks ago I got my second bout of diverticulitis within the past 4 1/2 months. They put me on augmentin and now I have c-dif again. My colonoscopy in Jan showed I had a tortuous colon and the GI dr couldn’t do the full colonoscopy and I wound up also having a virtual colonoscopy. Bottom line is that I’m an anxious wreck. Any health related thing sends me down the rabbit hole. I see a psychiatrist but I’m too afraid to take the meds he prescribes. I’ll be 64 next month and never thought I’d wind up like this. It’s bad enough the c-dif sends me to the bathroom, but I also have BMs related to the anxiety. My GI Dr has me on vancomycin. I can’t remember if it gave me as my side effects two years ago, but I’ve been on it for a couple of days and feel a little jittery/weird. Don’t know if it’s the vancomycin or just me being crazy anxious. Has anyone had this side effect or what side effects have you had? Also, what routine do you use to make sure your bathroom and house stay free of c-did?

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Yes, definitely had side effects, was full of anxiety and depression, thoughts of dying. I'm off and on vanco for 11months. Hang in there, we're here to support you.

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Thank you so much for responding. I’m so glad Mayo had this site. It’s just been a frustrating past few months between diverticulitis and now c-dif. In a way I’m glad I was overweight when all these problems started back in late Oct. I’ve lost about 30 lbs since then.

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@judy75

I had c-dif for the first time in 2019 and was a wreck. My GI Dr put me on vancomycin and it cleared up the c-dif. MovIng on to this year. Three weeks ago I got my second bout of diverticulitis within the past 4 1/2 months. They put me on augmentin and now I have c-dif again. My colonoscopy in Jan showed I had a tortuous colon and the GI dr couldn’t do the full colonoscopy and I wound up also having a virtual colonoscopy. Bottom line is that I’m an anxious wreck. Any health related thing sends me down the rabbit hole. I see a psychiatrist but I’m too afraid to take the meds he prescribes. I’ll be 64 next month and never thought I’d wind up like this. It’s bad enough the c-dif sends me to the bathroom, but I also have BMs related to the anxiety. My GI Dr has me on vancomycin. I can’t remember if it gave me as my side effects two years ago, but I’ve been on it for a couple of days and feel a little jittery/weird. Don’t know if it’s the vancomycin or just me being crazy anxious. Has anyone had this side effect or what side effects have you had? Also, what routine do you use to make sure your bathroom and house stay free of c-did?

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@judy, I had cdiff 2018. Vancomycin. On top of IBS-D, and fecal incontinence..... some days now its one roll of toilet tissue a day. Only thing that stops it is Imodium. Any antibiotic did and does give me double duty diarrhea and when having diarrhea not supposed to take Imodium..
About making sure bathroom and house c-diff free: I bought a book about it from amazon but wish I hadn't as it scared me .... I actually went bonkers trying to follow what she said to do. Actually, it was a prelude to what we we are doing since
Covid first struck.

Obviously, main thing was bathroom.... and mainly what I used was ratio of 1 teaspoon bleach to 1 cup of water, multiplied by ratio. Thin rubber gloves and I have a stock of white face cloths which I only used for myself... so wet the cloth with the bleach mixture and wiped everything over that bleach wouldnt ruin, including door knobs, light swithches.

What some people forget is the handle of the toilet brush and the flap to flush the toilet, anything that is touched before washing hands. However when first got it and the book , I spent almost five hours wiping everything down that was plastic, counters etc, tv channel changer, phones, until I felt I was going to pass out with exhaustion.
I had 3 piles of laundry; kept my clothing separate from husband's and kept my soiled articles separate from other piles. I ruined some black slacks as got bleach on them. Beautiful summer but didn't put clothes on line once... used the hottest setting on dryer and of course ruined some more clothing.
Anyway, I later heard of others who had C.Diff who just made sure their hands were washed with soap and water before eating and cooking.... or preparing food; similar to what we are now doing through Covid. Covid is more scary as we cannot see the virus.... but with c.diff we know its mainly in the bathroom....so toilet, bathtub, shower, sinks and taps would be my main concern. I went overboard though and didnt visit neighbours. Cancelled cleaning company. I was quite ill. Of course now there are many types of wipes and sprays in the stores for Covid which will also kill C.Diff but bleach is cheap just dont use it too strong and open windows etc.,per the instructions on bottle.
Odd thing is, there are many many people walking around (or were before covid) and serving us food etc, and they had c.diff and either don't do anything about it or don't know they have it, so I would say be extra careful using someone else's bathroom, and especially public washrooms and washrooms in doctors offices etc. Good luck with it all.... hope I have passed on some helpful info. I got it after 6 antibiotics in 5 months and I think I may have picked it up in hospital bathroom. J.

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