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

@sue6408

Thank you . I have added fiber lax. But it didn’t help my bloating which occurs daily.

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@sue6408 did you use it with a probiotic thats the way he told me to use it .Some veggies will cause gas ,bloating especially the cabbage family but good idea to see a nutritionist.

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@sandyabbey

@tammy1pike, I am in the Birmingham Al area. I’m on my third recurrence of Cdiff. I got it from clindamycin given for a serious sinus infection. I had taken it before for dental reasons so I didn’t perceive a problem. I was so devastated when I got it. I’ve been having gut issues for a year now. Last December I had a horrible episode of unbearable pain, then diarrhea & then vomiting. I thought it was a virus, but when I got up the next morning I was having lots of bloody stool. I immediately went to my Dr. A CT scan revealed I had ischemic colitis. After a months treatment for that I had a colonoscopy. I had to wait for enough healing so as not to perforate my colon. I was almost normal except for pain in my lower gut soon after eating. I was diagnosed with diverticulitis & had a polyp removed. I thought I was on the road to a somewhat recovery. Then I guess that since I had a compromised gut anyway this Cdiff had really beat me down. I’m 71 & I thought was a young 71. I have a heart problem too ( Afib) but my treatment was going well. I fell like I won’t live long like this. I’m tiny anyway, but now I’m at 85 pounds. I’m very weak. I just can’t get my GI to take me seriously. They just throw meds at me. 2 rounds of Flagyl & now I’m on vancomycin. I feel a little better & no diarrhea, but I’m horrified that it will be back as soon as this round of meds is over. I’m desperate. We have lots of medical care here in Birmingham that people come from all over for. I guess I’m just going to the wrong Dr. I’m sorry I’m making this so long, but like I said I have no life. Thank you for listening.

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@sandyabbey We have a lot in common. I also got Cdiff after taking Clindamycin for a sinus infection this past April. Within 2 weeks of finishing the RX, I had Cdiff. I took 10 days of Flagyl. Five days after finishing that, Cdiff returned. I then did 10 days of Vancomycin and again, 5 days after finishing the med, Cdiff returned. I then did the pulse and taper Vanco for 5 or 6 weeks. I thought that might have worked. But 3 weeks after ending the pulse and taper, Cdiff returned. After my 4th bout, I took Dificid for 10 days. It's a pricey med. $5,000 for 20 pills. My co-pay was almost $1,000. I finished that med on 10/26. So far, so good. If Cdiff returns, I'm doing a fecal transplant. I've looked in to the pill form from Open Biome. It's $635 for 30 pills and you take them all at one setting. I haven't discussed this with my gastroenterologist so I'm not sure how he feels about the pill form. He has me taking Florastor. Are you taking a probiotic with Saccharomyces Boulardii. It's the best for Cdiff since it doesn't dissolve with stomach acid and goes to work in your intestine.

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Have you made any changes on your diet? That seems to have done the trick for me following antibiotic. Clindymycin killed my intestinal flora. Low carb, low fructose, low fermentable food is what has helped me post antibiotic use.

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@pines

@sandyabbey We have a lot in common. I also got Cdiff after taking Clindamycin for a sinus infection this past April. Within 2 weeks of finishing the RX, I had Cdiff. I took 10 days of Flagyl. Five days after finishing that, Cdiff returned. I then did 10 days of Vancomycin and again, 5 days after finishing the med, Cdiff returned. I then did the pulse and taper Vanco for 5 or 6 weeks. I thought that might have worked. But 3 weeks after ending the pulse and taper, Cdiff returned. After my 4th bout, I took Dificid for 10 days. It's a pricey med. $5,000 for 20 pills. My co-pay was almost $1,000. I finished that med on 10/26. So far, so good. If Cdiff returns, I'm doing a fecal transplant. I've looked in to the pill form from Open Biome. It's $635 for 30 pills and you take them all at one setting. I haven't discussed this with my gastroenterologist so I'm not sure how he feels about the pill form. He has me taking Florastor. Are you taking a probiotic with Saccharomyces Boulardii. It's the best for Cdiff since it doesn't dissolve with stomach acid and goes to work in your intestine.

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According to my nutritionist guar gum fiber does not ferment like the others. It is a product called nutrisource made by Nestle. No prescription needed.

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@guthealth

According to my nutritionist guar gum fiber does not ferment like the others. It is a product called nutrisource made by Nestle. No prescription needed.

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@guthealth I've not tried Nutrisource.

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@sandyabbey

Thank you so much for replying, guthealth. I’m going to my GI dr next week. I have several things to talk to him about. It seems to me that they aren’t taking this as seriously as it is. I have a few decent days & then a week of the nightmare. I’m going to check out getting thus drink. I’m desperate. I feel I won’t live long if I don’t get help. I can’t tolerate this horrible CDiff coming back a few days after I get off the antibiotics. I’m weak too. There has to be something to help me recover. I’m definitely going to try this drink. Again THANK YOU.

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Don’t give up and see if you can get a referral to a nutritionist. I consider myself a fairly smart and educated person and trust me when I tell you I was clueless about the diet to follow for these infections. I was relapsing all over the place and losing weight at an alarming rate. I was truly desperate. I had read about low FODMAP and SCD diets but was making all sorts of mistakes on how I implemented the diet. Those elemental shakes have been extremely helpful. Sounds like you need more support and attention than what you are presently getting from your health providers. Keep us posted.

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@pines

@guthealth I've not tried Nutrisource.

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I have had no bad reaction from it and it helps bulk up stools.

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@lioness

@sue6408 did you use it with a probiotic thats the way he told me to use it .Some veggies will cause gas ,bloating especially the cabbage family but good idea to see a nutritionist.

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I started with Floraster 8wks. ago some slight decrease in bloating.I start the day off with a flat belly ! drink h2o ,I start bloating. By the time I have finished my dinner I look and feel 10 months pregnant. Some nights I don't think I will make it to the morning with all the pressure and pain. Even the mayo clinic told me they could not help me. I have eliminated dairy, beans, and cabbage family. I only drink h2o,don't chew gum. I wish I could find a Dr. to help me.

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@sue6408

I started with Floraster 8wks. ago some slight decrease in bloating.I start the day off with a flat belly ! drink h2o ,I start bloating. By the time I have finished my dinner I look and feel 10 months pregnant. Some nights I don't think I will make it to the morning with all the pressure and pain. Even the mayo clinic told me they could not help me. I have eliminated dairy, beans, and cabbage family. I only drink h2o,don't chew gum. I wish I could find a Dr. to help me.

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I was lost until I started working with a nutritionist. I thought I had eliminated everything harmful, but in reality I was making many mistakes with my diet. Bland foods like bread, rice and potatoes and Jello, of all things, can cause bloating, gas and fermentation because they are high in starch and sugar. I can’t emphasize this enough. I was a mess, experiencing diarrhea and dropping weight (20 pounds) and thought I had eliminated all potentially harmful foods because I had cut out gluten, dairy, coffee and carbonated drinks. I took rounds of antibiotics and kept relapsing after a week. After I met with the nutritionist, I realized all the wrong foods I was still eating that were harming me. Ask for a referral to a nutritionist. You are bloating because the food you eat is likely being fermented by bacteria in your small intestine. I was the same until I went on a guided diet plan. There are also elemental diets one can follow for a couple of weeks to reduce bad bacteria overgrowth. Florastor alone will not take care of the problem. I take that too but that alone will not solve the bacterial imbalance in our gut. I had to initiate the request to my GI doctor. It did not occur to him to refer me to a nutritionist until I told him I thought I was going to die if I kept dropping weight at that rate.

Liked by lioness

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@sue6408

I started with Floraster 8wks. ago some slight decrease in bloating.I start the day off with a flat belly ! drink h2o ,I start bloating. By the time I have finished my dinner I look and feel 10 months pregnant. Some nights I don't think I will make it to the morning with all the pressure and pain. Even the mayo clinic told me they could not help me. I have eliminated dairy, beans, and cabbage family. I only drink h2o,don't chew gum. I wish I could find a Dr. to help me.

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@sue6408 Sorry Dr can't help you I thought no you should see a nutritionist like guthealth suggest good luck hope this will help you

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@guthealth

I was lost until I started working with a nutritionist. I thought I had eliminated everything harmful, but in reality I was making many mistakes with my diet. Bland foods like bread, rice and potatoes and Jello, of all things, can cause bloating, gas and fermentation because they are high in starch and sugar. I can’t emphasize this enough. I was a mess, experiencing diarrhea and dropping weight (20 pounds) and thought I had eliminated all potentially harmful foods because I had cut out gluten, dairy, coffee and carbonated drinks. I took rounds of antibiotics and kept relapsing after a week. After I met with the nutritionist, I realized all the wrong foods I was still eating that were harming me. Ask for a referral to a nutritionist. You are bloating because the food you eat is likely being fermented by bacteria in your small intestine. I was the same until I went on a guided diet plan. There are also elemental diets one can follow for a couple of weeks to reduce bad bacteria overgrowth. Florastor alone will not take care of the problem. I take that too but that alone will not solve the bacterial imbalance in our gut. I had to initiate the request to my GI doctor. It did not occur to him to refer me to a nutritionist until I told him I thought I was going to die if I kept dropping weight at that rate.

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Thank you for your help.

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@lioness

@sue6408 Sorry Dr can't help you I thought no you should see a nutritionist like guthealth suggest good luck hope this will help you

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I will research nutritionist in my area. Thank you

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Your pencil thin bm remind me exactly what I have suffered though for the last 3+ years. I'd wake up in horrible pain and be in and out of the bathroom so often I was wishing I could die. I have been taking some otc, meds that have helped some. If I had eaten anything like pickles that would have torn my stomach up more. I haven't touched any more antibiotics in 3 years. A colonoscopy shouldn't cause you to lose your good bacteria. Only the use of antibiotics will do that. I have been though every horrible and nightmarish test they have and NOTHING showed up. Here is my theory, the over use of antibiotics has causes damage to my intestines and other parts internally. The pharmacy companies have never done any real testing on what happens when a person is subjected to over use of them. Therefore no one knows what happens as a result or knows what to look for on any test. if the pharmaceutical companies did any testing they would have the snot suit out of them. Therefore they will never do any research on people that have been overdosed and overprescribed antibiotics.

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@taxpayinghorse

Your pencil thin bm remind me exactly what I have suffered though for the last 3+ years. I'd wake up in horrible pain and be in and out of the bathroom so often I was wishing I could die. I have been taking some otc, meds that have helped some. If I had eaten anything like pickles that would have torn my stomach up more. I haven't touched any more antibiotics in 3 years. A colonoscopy shouldn't cause you to lose your good bacteria. Only the use of antibiotics will do that. I have been though every horrible and nightmarish test they have and NOTHING showed up. Here is my theory, the over use of antibiotics has causes damage to my intestines and other parts internally. The pharmacy companies have never done any real testing on what happens when a person is subjected to over use of them. Therefore no one knows what happens as a result or knows what to look for on any test. if the pharmaceutical companies did any testing they would have the snot suit out of them. Therefore they will never do any research on people that have been overdosed and overprescribed antibiotics.

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Totally agree with your post. That is exactly what happened to me. Clindymycin destroyed my intestinal flora and I am now working to repair the damage done to my gut.

Liked by dn22

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To all of you, I am still battling CDiff. I’m now on vancomycin. I had 3 rounds with Flagyl which seemed to help at the time, until I was off about 3 days. Then HORRIBLE diarrhea set in again. If I even sipped a drink of water I had better be sitting on the toilet. I had not eaten lots during the last couple of weeks because of being sick. Mostly soups & potatoes. I’m very tiny anyway so I’m not a big eater anyway. I’m 71 & have lost 20 pounds. I only weighted 105 at the beginning so I’m at 85. I have a heart issue called Afib & hypertension also. I’m doing well with those due to a wonderful cardiologist. After the 3rd relapse with this awful Cdiff I was getting in a panic. I never knew it was possible to have that much diarrhea & mucus come out of one tiny person. One night my husband said around 40 times. I had IV fluids & was sent home on Flagyl. Now I still have a week left on the vancomycin. As the time grows closer to being off I feel in a panic. My body can’t take another set back as bad as the others. I feel that my Dr is just going to wait & see if I do. I guess that’s all he can do. There are lots of foods that still hurt me, so I’m eating carefully. The diarrhea is gone except for one loose BM in the morning. Last time I got off the Flagyl I went 5 days without a Bm. Them boom. I don’t won’t to die like this after all I have been through with my heart & have mostly conquered that. I have made lots of notes from all these discussions from here. I’m going to ask my GI about all this. He doesn’t like to be questioned, but if he can’t listen I’m walking out & going somewhere else. I’m just not up to all these tests all over again I can’t even walk trough the grocery store alone. I’ll have a good day & think “YAY” then get up cramping of feel like my legs are rubber. With all the medical technology it seems like they should be able to help peopl like us. Oh, I think I forgot to say that I got it from clindamycin also for a severe sinus infection. I also have a compromised gut anyway due to diverticulosis & I had an episode with ischemic colitis about 10 months ago I know this is long, but I’m getting desperate. Any other ideas other than what I’ve read in these discussions? I’m open to listening to anything.

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