Trying to recover from a c.diff infection

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

@rtg103

I was having diarrhea and mild upper left abdomen pain. Weeks before my tongue became very dry and now had a white coating in the back that will not go away. It's not bacterial or fungal. I went to a GI for my bowel problems and they gave a colonoscopy and upper endoscopy which had good normal results. I also had blood and stool testing. I got results 24 hours AFTER colonoscopy. All results fine except I have c diff. I got vanco 125mg for 14 days. I'm on day 11 and the slight pain is still there, my stool is orange with black flakes in it and slightly loose. I'm nervous that the antibiotics are not working. Is this normal? I'm also scared to infect others. If first treatment doesnt work will symptoms intensify? My anxiety is through the roof and I cry daily. I lost a relationship with my girlfriend over this, I'm scared I'm going to lose my job, and I'm scared to die. Any info would be appreciated. Thanks for listening.

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Are you immune-suppressed? Usually, people with normal immune systems do not get C. Diff. The stuff on your tongue is likely fungal; have you had it tested in the lab? The fact that you have Clostridium Difficile AND what sounds like an OVERGROWTH of Candida Albicans say that your immune system is not working as it is supposed to. If I were you, I would get another stool test a few days after you have completed the 2-week course. I picked up a case of C. Diff in the hospital and it took 3 courses of Vancomycin to get rid of it. Don't worry about infecting others unless they are elderly, newly-born or otherwise have abnormal immune function. How would you lose your job? Hopefully, you can be honest with your employer. You picked up a disease and you can get a letter from a physician which attests to that fact! You may be anxious and cry daily if you wish but, frankly, I would suggest that you educate yourself with regard to C. Diff , Candida Albicans AND tests to find out whether or not your immune systemn is working!! Furthermore, it sounds like you are in need of some emotional support!!!

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@vander626

Are you immune-suppressed? Usually, people with normal immune systems do not get C. Diff. The stuff on your tongue is likely fungal; have you had it tested in the lab? The fact that you have Clostridium Difficile AND what sounds like an OVERGROWTH of Candida Albicans say that your immune system is not working as it is supposed to. If I were you, I would get another stool test a few days after you have completed the 2-week course. I picked up a case of C. Diff in the hospital and it took 3 courses of Vancomycin to get rid of it. Don't worry about infecting others unless they are elderly, newly-born or otherwise have abnormal immune function. How would you lose your job? Hopefully, you can be honest with your employer. You picked up a disease and you can get a letter from a physician which attests to that fact! You may be anxious and cry daily if you wish but, frankly, I would suggest that you educate yourself with regard to C. Diff , Candida Albicans AND tests to find out whether or not your immune systemn is working!! Furthermore, it sounds like you are in need of some emotional support!!!

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Thank you for your reply. I do not know if I am immune surprised. How would I find out? I have been tested for fungal with negative results twice. I go to an oral pathologist Oct. 2 because my ENT is stumped. I'm nervous about my job because my boss is fed up with me missing time from work for doctors appointments and I am unsure of my protected rights in that regard. I am attempting to get psychological support as well as I agree I need that badly for more than just the c diff. I worry about everything. I'm scared I will spiral into a depression so deep and want to die. These antibiotics are not working I do not feel and am nervous my symptoms will intensify when I finish them. Then again, what am I not nervous about?

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@rtg103

I was having diarrhea and mild upper left abdomen pain. Weeks before my tongue became very dry and now had a white coating in the back that will not go away. It's not bacterial or fungal. I went to a GI for my bowel problems and they gave a colonoscopy and upper endoscopy which had good normal results. I also had blood and stool testing. I got results 24 hours AFTER colonoscopy. All results fine except I have c diff. I got vanco 125mg for 14 days. I'm on day 11 and the slight pain is still there, my stool is orange with black flakes in it and slightly loose. I'm nervous that the antibiotics are not working. Is this normal? I'm also scared to infect others. If first treatment doesnt work will symptoms intensify? My anxiety is through the roof and I cry daily. I lost a relationship with my girlfriend over this, I'm scared I'm going to lose my job, and I'm scared to die. Any info would be appreciated. Thanks for listening.

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There is no such thing as "negative results" because we ALL have fungi in our mouths!! Get a copy of the lab report and look it up yourself. If you are honest with your employer about what is going on and you get terminated,,,,,,,,,,,that would be a violation of the Americans with Disabilities Act. Tell your Primary Care Phusician (or, theretically, ANY plysician or Nurse Practitioner) that you want to find out whether you are immune deficient or not. OR see an Infectious Diseases specialist. You are the person who knows whether or not the Vancomycin is working; unfortunately, most physicians will need lab proof before prescribing another round. STAND UP FOR YOURSELF! Is the prescribing physician someone with whom you can talk honestly? The more you know, empirically, the better off you will be…..so look up Clostridium Difficile!!!

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I have been going though much of what you described and worse. Is there any chance we could talk via phone? I maybe able to offer you some suggestions. I am not selling anything. Just too much to type on here. I am also a patient at Mayo Clinic in Jacksonville Florida. I have had C -diff 3 times. If I get it again I think I'll die. I can't take flagely or vancomycin anymore either. My bowels are all messed up too. It is from the over use of antibiotics and over doses of them I believe. Have you ever had your appendix removed? I had a nurse tell me that is what has caused a lot of problems for people. The appendix actually the seed vault that produces the good bacterial we need in our guts. When our appendix is removed we lose the good bacterial it produces. My name is Paula.

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@taxpayinghorse

I have been going though much of what you described and worse. Is there any chance we could talk via phone? I maybe able to offer you some suggestions. I am not selling anything. Just too much to type on here. I am also a patient at Mayo Clinic in Jacksonville Florida. I have had C -diff 3 times. If I get it again I think I'll die. I can't take flagely or vancomycin anymore either. My bowels are all messed up too. It is from the over use of antibiotics and over doses of them I believe. Have you ever had your appendix removed? I had a nurse tell me that is what has caused a lot of problems for people. The appendix actually the seed vault that produces the good bacterial we need in our guts. When our appendix is removed we lose the good bacterial it produces. My name is Paula.

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Paula please ask about Fecal matter transfers which have over 90%cure rate for C Diff.

Liked by lioness

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I feel for you, I’m going through the same thing. I was prescribed antibiotics and now have had a c diff infection for 3 weeks. I’m on a second course of antibiotics and they are not working nothing is. I’m loosing weight, and I’m severely depressed due to my social life, work life and personal life being negatively impacted by this infection. The doctor told me I may have an “upset stomach” She never mentioned colitis caused by a C Diff infection being a possibility if she had I would have never taken the antibiotics. I’m very upset by negligence on the part of my doctor. Something has to be done to help all of us who are suffering from life changing ailment.

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@falko1984

I feel for you, I’m going through the same thing. I was prescribed antibiotics and now have had a c diff infection for 3 weeks. I’m on a second course of antibiotics and they are not working nothing is. I’m loosing weight, and I’m severely depressed due to my social life, work life and personal life being negatively impacted by this infection. The doctor told me I may have an “upset stomach” She never mentioned colitis caused by a C Diff infection being a possibility if she had I would have never taken the antibiotics. I’m very upset by negligence on the part of my doctor. Something has to be done to help all of us who are suffering from life changing ailment.

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Fecal transplant is supposed to correct the problem by having good bacteria set the intestines on a normal path. I would certainly opt for it if I was experiencing the problem you all describe. Please consider this break-through in gastro procedures. Wishing you all wellness.

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@falko1984

I feel for you, I’m going through the same thing. I was prescribed antibiotics and now have had a c diff infection for 3 weeks. I’m on a second course of antibiotics and they are not working nothing is. I’m loosing weight, and I’m severely depressed due to my social life, work life and personal life being negatively impacted by this infection. The doctor told me I may have an “upset stomach” She never mentioned colitis caused by a C Diff infection being a possibility if she had I would have never taken the antibiotics. I’m very upset by negligence on the part of my doctor. Something has to be done to help all of us who are suffering from life changing ailment.

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So sorry to hear about your pain. I am in the same boat, Developed diarrhea, gas and bloating following a course of Clindimycin (a terrible antibiotic in my opinion). Doctor thought I had CDiff, put me on Flagyl for ten days, got a little better but then I slid back. My tests came back negative for CDiff and I finally got to see a gastroenterologist who thinks I have SIBO and put me back on Flagyl. I am a little better but eating little and feel a lot of bloating, lost ten pounds in two months. Did you test positive for CDiff? Have you seen a specialist? Unfortunately, I don’t think PCPs know much about this. Mine is the one who basically messed up my GI by prescribing Clindimycin for a minor UTI, Try to get to a specialist if you can. In my case I have a bacterial infection but it was not CDiff but dysbiosis caused by too broad acting an antibiotic. I hope you feel better soon. Using Loperamide and a low FODMAPS diet is helping me a little bit. I am beginning to accept that my recovery from this is going to be gradual. Baby steps. I know what you mean about work and social life because I am sick of apologizing to my friends and or going to a restaurant and end up spending money for a meal I can’t eat or that gives me horrible diarrhea. This is not fun. Hard for others to understand how this can turn your life upside down so fast. Do hope you find answers and feel relief soon.

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@guthealth

So sorry to hear about your pain. I am in the same boat, Developed diarrhea, gas and bloating following a course of Clindimycin (a terrible antibiotic in my opinion). Doctor thought I had CDiff, put me on Flagyl for ten days, got a little better but then I slid back. My tests came back negative for CDiff and I finally got to see a gastroenterologist who thinks I have SIBO and put me back on Flagyl. I am a little better but eating little and feel a lot of bloating, lost ten pounds in two months. Did you test positive for CDiff? Have you seen a specialist? Unfortunately, I don’t think PCPs know much about this. Mine is the one who basically messed up my GI by prescribing Clindimycin for a minor UTI, Try to get to a specialist if you can. In my case I have a bacterial infection but it was not CDiff but dysbiosis caused by too broad acting an antibiotic. I hope you feel better soon. Using Loperamide and a low FODMAPS diet is helping me a little bit. I am beginning to accept that my recovery from this is going to be gradual. Baby steps. I know what you mean about work and social life because I am sick of apologizing to my friends and or going to a restaurant and end up spending money for a meal I can’t eat or that gives me horrible diarrhea. This is not fun. Hard for others to understand how this can turn your life upside down so fast. Do hope you find answers and feel relief soon.

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@guthealth. In the past I had intestinal problems Went to Dr he put me on more fiber and a good probiotic. This helped mine The probiotic put the good bacteria in my system guess this was what it needed In the beginning I thought more fiber but I have diarrhea but it worked. I never had cdiff but from what Ive heard a fecal transplant has helped others ,might be something to look into?

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@falko1984

I feel for you, I’m going through the same thing. I was prescribed antibiotics and now have had a c diff infection for 3 weeks. I’m on a second course of antibiotics and they are not working nothing is. I’m loosing weight, and I’m severely depressed due to my social life, work life and personal life being negatively impacted by this infection. The doctor told me I may have an “upset stomach” She never mentioned colitis caused by a C Diff infection being a possibility if she had I would have never taken the antibiotics. I’m very upset by negligence on the part of my doctor. Something has to be done to help all of us who are suffering from life changing ailment.

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So here is my update 4 months with cdiff finaly and slowly recovering …1 thing i think is helping i got germacide bleach at lowes and i do my bathroom and kitchen 2 times a week reg bleach wont kill cdiff has to have sodium hyclortite in it my dr told me to do this and im thinking she is so rite

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@wendyw

Paula please ask about Fecal matter transfers which have over 90%cure rate for C Diff.

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Mayo Won't has some VERY strict rules before they will do them. I don't meet the criterial to have a fecal transplant done. After all the doctors I have seen, I don't trust any of them. Mayo is the only place I will go for treatment. Honestly, I would rather die then go back to the doctors I have seen. They are the ones that put me in this position.

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@taxpayinghorse

Mayo Won't has some VERY strict rules before they will do them. I don't meet the criterial to have a fecal transplant done. After all the doctors I have seen, I don't trust any of them. Mayo is the only place I will go for treatment. Honestly, I would rather die then go back to the doctors I have seen. They are the ones that put me in this position.

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What state do you live in

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3 Weeks? I have been going though this for over 3 years. I wake up in the morning, feel as if I have food poisoning. Diarrhea and loose stools all morning and after noon with horrible cramping and severe pain in my intestines. By afternoon on a "good day" the diarrhea stops but my stomach feels as if it has been kicked repeatedly by a mule because the intestines are so stripped. My stomach hurts so bad even to move or walk. I usually just want to sleep. On worse days, this goes on all day, with the cramping and stomach pain and running to the bathroom usually nothing coming out by afternoon. I lay in my recliner and try to rest. That is the only thing that seems to help any. It was worse 3 years ago then it is now. My bms are very narrow and soft if it isn't all watery and loose. I have bms starting in the early morning, (waking me up at 5am or earlier) I can not go back to bed because once it starts it doesn't stop. If I am lucky by 2pm, the pain is still very bad but the diarrhea has stopped. I usually don't have another bm till the next morning when all hell breaks out again. The really bad days I wear pull ups and wish for death because the pain is so bad and I can't make it to the bathroom on time. As for it effecting my "social life"….what is that? I could care less about a social life. I just wish the pain would stop. Here is my theory of what I think has happened. I kept having bladder infections. The VA (Veteran's Hospital) Doctors kept giving me antibiotics. Dr. Bender at the VA hospital in Gainesville did me the worse damage, he left me on antibiotics for 2 solid years. I think that has permanently damaged my intestines and even my bladder now. I also have horrible bladder spasms. Bladder Spasms don't stop for hours and it is worse then any tooth ache you can imagine. It feels as if your bladder if OVER FULL and you really need to urinate. One of the things "Dr." Bender told me to do for the bladder spasms was to drink a cup of water with a couple of tablespoons of baking soda put in it. When you drink this, it makes you throw up. It doesn't help at all. I believe this damage is permanent. I have been able to go 3 years without taking any oral or intravenous antibiotics. I go to extraordinary lengths to avoid colds and infections. That is another entire story. I believe the antibiotics has caused this damage. The pharmaceutical companies have not done any studies on what long term use and over use of antibiotics does to people. IF they did they would be sued. I may be wrong but that is all I can come up with. Now what has helped me is this: I take Calcium Polycarbophil 625 mg tablets. I take 9 a day. 3 of them with each meal. It is very important to eat something, it only gets worse if you don't eat I find. On my really bad days I eat only saltine crackers and sometimes a can of Campbells Chicken Noodle soup. It seems to help. Another thing that I think has made a big difference is "Beano", Walmart makes there own brand and you take less of them. I take one of the Walmart Brand 3X a day. Lastly I take 9 to 12 pills a day of Probiotic 10. I can't always afford it. The VA won't pay for most of my meds. I buy the Probiotic from Costco. They have the best prices. I have had people tell me to eat Kimchee (it is fermented cabbage) and drink Apple Cider Vinegar. DON'T DO IT. I tried it and thought I was going to die. The Calcium Polycarbophil and Beano helps the most. I don't really know or can tell if the Probiotic 10 is helping at all. One thing that did seem to make it worse were my vitamins. I have stopped taking all my vitamins. Another thing that will really make it worse is greasy, friend foods, cabbage, cauliflower and ice cream and milk. I hope this helps and thank you for listening to me whine.

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@gina1963

What state do you live in

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I am in Florida.

Liked by gina1963

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@guthealth

So sorry to hear about your pain. I am in the same boat, Developed diarrhea, gas and bloating following a course of Clindimycin (a terrible antibiotic in my opinion). Doctor thought I had CDiff, put me on Flagyl for ten days, got a little better but then I slid back. My tests came back negative for CDiff and I finally got to see a gastroenterologist who thinks I have SIBO and put me back on Flagyl. I am a little better but eating little and feel a lot of bloating, lost ten pounds in two months. Did you test positive for CDiff? Have you seen a specialist? Unfortunately, I don’t think PCPs know much about this. Mine is the one who basically messed up my GI by prescribing Clindimycin for a minor UTI, Try to get to a specialist if you can. In my case I have a bacterial infection but it was not CDiff but dysbiosis caused by too broad acting an antibiotic. I hope you feel better soon. Using Loperamide and a low FODMAPS diet is helping me a little bit. I am beginning to accept that my recovery from this is going to be gradual. Baby steps. I know what you mean about work and social life because I am sick of apologizing to my friends and or going to a restaurant and end up spending money for a meal I can’t eat or that gives me horrible diarrhea. This is not fun. Hard for others to understand how this can turn your life upside down so fast. Do hope you find answers and feel relief soon.

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When you eat out, always eat a piece of bread if you can. Crackers are good too, do it before you leave for the restaurant. If you are going to a steak house and sit down to eat a nice steak, with baked potato with the sour cream and butter you are guaranteed to have diarrhea. It has something to do with the high fat content that will get your stomach rolling. By eating bread or crackers, it soaks up some of the acids in your stomach. Eating crackers or bread prior to my meal helps me and taking Calcium Polycarbophil before I eat also really helps. I take at least 3 tablets before each meal. Also Beano helps me too. You got nothing to lose if you try it.

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