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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@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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@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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@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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@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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@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.

Jump to this post

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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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.

REPLY
@sandyabbey

I am having the same problem getting my gut somewhat normal after Cdiff. I relapsed 4 times after treatment. Mine was also caused by clindamycin given to me for a severe sinus infection. I took Flagyl first & got better for a few days. I was sent to a GI who put me on vancomycin. I thought I was better because I went 10 days seeming ok for 10 days after finishing 10 days of that. I was very sick that time & had to be taken to the hospital by ambulance. I couldn’t even stand. I got diarrhea at night on the Saturday before Christmas & had the diarrhea at least 40 times & couldn’t even get back to bed. My my husband called my son who came to try & help him get me to the ER. I was passing out & couldn’t stand so they couldn’t get me there safely. We called the Dr on call for my GI & he said call an ambulance immediately. As soon & they for here they started an IV & left immediately. My BP was very low but started up when the fluids started. The Er gave me Dificid. I did well with that & again I thought I was going to be ok. I went 32 days then another relapse. Out of other options I had an FMT. I had mine via endoscopy down through my stomach into my small intestine. My GI said if I relapse again he’ll do another one via colonoscopy. I’m 32 days post FMT. & my stools still aren’t normal. I either get constipated & have to take miralax for a couple of days, then I’ll have several BM’s a day. Not diarrhea, but soft small thin pieces. When I eat anything except soft foods I have problems. I’m about to start Florastor. I’ve been drinking Kefir & eating yogurt everyday. I’m just praying I don’t relapse again. My GI is going to test an another month unless I get sick again. Everyone I talk to that has had Cdiff says it destroys your gut very badly & it takes a long time to get to a normal. Some say a year or more. I’m depressed over this because I weigh 85 pounds after loosing 20 pounds. I am desperate to gain some weight. This is such a bad thing. I wish they could come up with something to help all of us. Also my I say I’m 71 & have heart issues also. I hope you can get help, but maybe you are going to have to be patient like they want me to & that’s so hard. I’m praying for you & all of us.

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Hi Sandy. I’m accessing your last post as a starting point for my experience with c-diff. I am also in the colon cancer chat group. This is where I started after having a colon re-section surgery when my colonoscopy showed cancerous tissue. When I was healing at home, I started experiencing more pain/discomfort and bowel frequency. Then came that smell. Two months later, I tested positive for c-diff. I just finished my second round of vanco and I am feeling much better. Still have bowel issues, food sensitivity and gas. Last night I woke up to stomach acid in my throat. So, it’s been 3-4 months since my surgery and I am reading chats with the same symptoms as other chat members. My surgeon is no help and he is talking about referring me to a gastro specialist. I’m not willing to do that quit yet. I reported my c-diff to Risk Management in the hospital where I received my surgery and will not do anything until the investigation is over. How have faired since your last correspondence? Anything advise? Any helpful info? I would appreciate you or anyone responding to my situation. I guess I’m wondering if I will have a relapse and be dealing with c-diff (again) and a new antibiotic. Not sure how I feel about a bowel transplant, but I’m not totally against it either. Virgo1952

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@sandyabbey

I am having the same problem getting my gut somewhat normal after Cdiff. I relapsed 4 times after treatment. Mine was also caused by clindamycin given to me for a severe sinus infection. I took Flagyl first & got better for a few days. I was sent to a GI who put me on vancomycin. I thought I was better because I went 10 days seeming ok for 10 days after finishing 10 days of that. I was very sick that time & had to be taken to the hospital by ambulance. I couldn’t even stand. I got diarrhea at night on the Saturday before Christmas & had the diarrhea at least 40 times & couldn’t even get back to bed. My my husband called my son who came to try & help him get me to the ER. I was passing out & couldn’t stand so they couldn’t get me there safely. We called the Dr on call for my GI & he said call an ambulance immediately. As soon & they for here they started an IV & left immediately. My BP was very low but started up when the fluids started. The Er gave me Dificid. I did well with that & again I thought I was going to be ok. I went 32 days then another relapse. Out of other options I had an FMT. I had mine via endoscopy down through my stomach into my small intestine. My GI said if I relapse again he’ll do another one via colonoscopy. I’m 32 days post FMT. & my stools still aren’t normal. I either get constipated & have to take miralax for a couple of days, then I’ll have several BM’s a day. Not diarrhea, but soft small thin pieces. When I eat anything except soft foods I have problems. I’m about to start Florastor. I’ve been drinking Kefir & eating yogurt everyday. I’m just praying I don’t relapse again. My GI is going to test an another month unless I get sick again. Everyone I talk to that has had Cdiff says it destroys your gut very badly & it takes a long time to get to a normal. Some say a year or more. I’m depressed over this because I weigh 85 pounds after loosing 20 pounds. I am desperate to gain some weight. This is such a bad thing. I wish they could come up with something to help all of us. Also my I say I’m 71 & have heart issues also. I hope you can get help, but maybe you are going to have to be patient like they want me to & that’s so hard. I’m praying for you & all of us.

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Why are you waiting to start Florastor? I think the S. Boulardii has really helped me. Although my BM's are far from normal and I'm never constipated after my 4 bouts of Cdiff last year.

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I am having the same problem getting my gut somewhat normal after Cdiff. I relapsed 4 times after treatment. Mine was also caused by clindamycin given to me for a severe sinus infection. I took Flagyl first & got better for a few days. I was sent to a GI who put me on vancomycin. I thought I was better because I went 10 days seeming ok for 10 days after finishing 10 days of that. I was very sick that time & had to be taken to the hospital by ambulance. I couldn’t even stand. I got diarrhea at night on the Saturday before Christmas & had the diarrhea at least 40 times & couldn’t even get back to bed. My my husband called my son who came to try & help him get me to the ER. I was passing out & couldn’t stand so they couldn’t get me there safely. We called the Dr on call for my GI & he said call an ambulance immediately. As soon & they for here they started an IV & left immediately. My BP was very low but started up when the fluids started. The Er gave me Dificid. I did well with that & again I thought I was going to be ok. I went 32 days then another relapse. Out of other options I had an FMT. I had mine via endoscopy down through my stomach into my small intestine. My GI said if I relapse again he’ll do another one via colonoscopy. I’m 32 days post FMT. & my stools still aren’t normal. I either get constipated & have to take miralax for a couple of days, then I’ll have several BM’s a day. Not diarrhea, but soft small thin pieces. When I eat anything except soft foods I have problems. I’m about to start Florastor. I’ve been drinking Kefir & eating yogurt everyday. I’m just praying I don’t relapse again. My GI is going to test an another month unless I get sick again. Everyone I talk to that has had Cdiff says it destroys your gut very badly & it takes a long time to get to a normal. Some say a year or more. I’m depressed over this because I weigh 85 pounds after loosing 20 pounds. I am desperate to gain some weight. This is such a bad thing. I wish they could come up with something to help all of us. Also my I say I’m 71 & have heart issues also. I hope you can get help, but maybe you are going to have to be patient like they want me to & that’s so hard. I’m praying for you & all of us.

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