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

@gina1963

I wish a mayo clinic was close to me

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It is very worth the travel.

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@gina1963

So i went to the doctors and i have follicitic the gave me kephex antibiot and im to up my vancomycin im so scared to take the kephlex ….dpnt want cdoff back i had it 4 months

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I was prescribed Ciclopirox shampoo and Clobetesol foam which had done the trick for me.

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@musicflowers4u

It is very worth the travel.

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How do i find out what insurances they take

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For c diff it’s worth traveling to a medical center with most updated treatment. I contracted c diff when I was 87 after 3 months of antibiotics for uti and sinus infection. I had it recurrently for 18 months and it was the worst thing that ever happened to me! I also developed a rash all over that no one could diagnose which went away when I was cured. I was hospitalized repeatedly for dehydration, treated repeatedly with flagl and vancomycin and spent 3 months in isolation in rehab. I finally learned of a clinical trial for fecal transplant at nearby medical school center. I was on the list when an infectious disease doctor tried dificid ( which he managed to get me for $8.00) and 2 weeks later I was cured! Recovery takes time and patience. You may have ibd symptoms for some time plus you learn what foods may not agree with you. Your colon has been damaged after dealing with c diff but there is light at the end of the tunnel! You have to persist and find the most knowledgeable medical professionals and don’t give up. I am now looking forward to celebrating my 90th birthday ( a little older and wiser) I no longer indulge in pizza but I’m really as healthy as I was before this terrible disease caught up with me. Best of luck and good wishes to all who are fighting c diff.

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@gina1963

How do i find out what insurances they take

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Look up Dr. on Healthgrades or call or go by

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@abixby413

For c diff it’s worth traveling to a medical center with most updated treatment. I contracted c diff when I was 87 after 3 months of antibiotics for uti and sinus infection. I had it recurrently for 18 months and it was the worst thing that ever happened to me! I also developed a rash all over that no one could diagnose which went away when I was cured. I was hospitalized repeatedly for dehydration, treated repeatedly with flagl and vancomycin and spent 3 months in isolation in rehab. I finally learned of a clinical trial for fecal transplant at nearby medical school center. I was on the list when an infectious disease doctor tried dificid ( which he managed to get me for $8.00) and 2 weeks later I was cured! Recovery takes time and patience. You may have ibd symptoms for some time plus you learn what foods may not agree with you. Your colon has been damaged after dealing with c diff but there is light at the end of the tunnel! You have to persist and find the most knowledgeable medical professionals and don’t give up. I am now looking forward to celebrating my 90th birthday ( a little older and wiser) I no longer indulge in pizza but I’m really as healthy as I was before this terrible disease caught up with me. Best of luck and good wishes to all who are fighting c diff.

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@abixby413 Welcome to Mayo Clinic Connect!

I'm so pleased that you shared your amazing story of persistence and self-advocacy! What a remarkable ending to a very difficult journey. You have provided an example of the self-directedness that is needed in order to overcome difficult obstacles in life.
Thank you for posting this uplifting story and I hope that your 90th birthday is a great one!

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@hopeful33250

@abixby413 Welcome to Mayo Clinic Connect!

I'm so pleased that you shared your amazing story of persistence and self-advocacy! What a remarkable ending to a very difficult journey. You have provided an example of the self-directedness that is needed in order to overcome difficult obstacles in life.
Thank you for posting this uplifting story and I hope that your 90th birthday is a great one!

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I agree.

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What do u do if ur trying to recover from c diff and I just moved to a new state and I have no health insurance right now I was on the antibiotic the v one for 7 days and then 14 days and I just finished it 3 days ago and my stomach is killing me I don't have the runny stool or anything but my stomach hurts really bad I have no energy I have the funny taste in my mouth and I just tried starting a new job and I can't get up and go to work like this but my depression is at a all time high I'm just so tired of feeling this way so tired of being sick when does this ever end

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@proudmommmy1128

What do u do if ur trying to recover from c diff and I just moved to a new state and I have no health insurance right now I was on the antibiotic the v one for 7 days and then 14 days and I just finished it 3 days ago and my stomach is killing me I don't have the runny stool or anything but my stomach hurts really bad I have no energy I have the funny taste in my mouth and I just tried starting a new job and I can't get up and go to work like this but my depression is at a all time high I'm just so tired of feeling this way so tired of being sick when does this ever end

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I feel for you. Make sure you buy germicide bleach and wipe down everything you touch clean bathroom alot and wash hands

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@gina1963

I feel for you. Make sure you buy germicide bleach and wipe down everything you touch clean bathroom alot and wash hands

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Energy level takes a while to come back …

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@proudmommmy1128

What do u do if ur trying to recover from c diff and I just moved to a new state and I have no health insurance right now I was on the antibiotic the v one for 7 days and then 14 days and I just finished it 3 days ago and my stomach is killing me I don't have the runny stool or anything but my stomach hurts really bad I have no energy I have the funny taste in my mouth and I just tried starting a new job and I can't get up and go to work like this but my depression is at a all time high I'm just so tired of feeling this way so tired of being sick when does this ever end

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I have no answers only support to offer. I too started with a possible CDiff diagnosis two months ago after suffering from diarrhea for four weeks following a course of Clindimycin for a UTI. I have taken two rounds of Flagy,l which help but somehow I always seem to slide back to the semi solid stool stage. Not sure if I truly have CDiff. Gastro doctor thought I have SIBO and also had me go through CT scan of gut which was normal. Big relief but no answers. What I have found is that there is no linear or straight line recovery. I can do OK for one or two weeks and then have a couple of days when my gut becomes irritated and I go back to the diarrhea. I understand your frustration and depression. Iam following a low FODMAP diet, eating no gluten or dairy and sticking to what seem safe foods but have lost a lot of weight . My next step will probably be colonoscopy, though I had a normal one a year ago. Other theory is I may have something called microscopic colitis. I am trying to nourish my body, keep as normal a life as I can and try to not have dark thoughts. It seems to take a long time and trial and error to come up with a diagnosis or not. But it is hard for me not to feel at times like God is punishing me or has forgotten me. You need to find a doctor who listens and cares because this is a scary process without medical guidance. I also take Align, Florastor and slippery elm as supplements along with my fiber and vitamins. I take a loperidol after each loose BM and wait until next one to see if I need one. I am fortunate in that I am self employed and have a bathroom near my office. I rarely go out to eat with friends because I am afraid of restaurant food. Not sure how it is prepared. Don’t drink alcohol, sodas or caffeine. Never been a smoker and thought I was in fairly good health at 63 until all hell broke loose about four months ago. I found the story of the poster who is in his/her nineties inspiring. I aim to be that person. Don’t know if this post helps but I am here as much to give as to receive support. Getting to see the right doctor takes a long time, then getting a diagnosis takes much longer, etc. In meantime, we are miserable, losing weight, thinking we have cancer, etc.

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@guthealth

I have no answers only support to offer. I too started with a possible CDiff diagnosis two months ago after suffering from diarrhea for four weeks following a course of Clindimycin for a UTI. I have taken two rounds of Flagy,l which help but somehow I always seem to slide back to the semi solid stool stage. Not sure if I truly have CDiff. Gastro doctor thought I have SIBO and also had me go through CT scan of gut which was normal. Big relief but no answers. What I have found is that there is no linear or straight line recovery. I can do OK for one or two weeks and then have a couple of days when my gut becomes irritated and I go back to the diarrhea. I understand your frustration and depression. Iam following a low FODMAP diet, eating no gluten or dairy and sticking to what seem safe foods but have lost a lot of weight . My next step will probably be colonoscopy, though I had a normal one a year ago. Other theory is I may have something called microscopic colitis. I am trying to nourish my body, keep as normal a life as I can and try to not have dark thoughts. It seems to take a long time and trial and error to come up with a diagnosis or not. But it is hard for me not to feel at times like God is punishing me or has forgotten me. You need to find a doctor who listens and cares because this is a scary process without medical guidance. I also take Align, Florastor and slippery elm as supplements along with my fiber and vitamins. I take a loperidol after each loose BM and wait until next one to see if I need one. I am fortunate in that I am self employed and have a bathroom near my office. I rarely go out to eat with friends because I am afraid of restaurant food. Not sure how it is prepared. Don’t drink alcohol, sodas or caffeine. Never been a smoker and thought I was in fairly good health at 63 until all hell broke loose about four months ago. I found the story of the poster who is in his/her nineties inspiring. I aim to be that person. Don’t know if this post helps but I am here as much to give as to receive support. Getting to see the right doctor takes a long time, then getting a diagnosis takes much longer, etc. In meantime, we are miserable, losing weight, thinking we have cancer, etc.

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I had cdiff for 5 months and i have colitice so this realy made my life a nitemare …any help i can give you i will and i ask god why …you no i was always told god only gives you wat you can handle …so i said i guess he thinks i can handle alot ….because that was a lot

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@gina1963

I had cdiff for 5 months and i have colitice so this realy made my life a nitemare …any help i can give you i will and i ask god why …you no i was always told god only gives you wat you can handle …so i said i guess he thinks i can handle alot ….because that was a lot

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I totally understand your pain and desperation and cry when I read these posts. I have had some very dark moments and some very angry moments. My colitis started after a round of a broad acting antibiotic which should not have been prescribed for a UTI. I am very angry at my PCP who essentially caused my problem and then basically abandoned me or told me to go see a gastro doctor, which then took me another two months to get in. These become chronic or self reinforcing conditions because we have to keep eating and irritating the colon while it tries to heal. I can’t give you medical advice but try to eat things that are calming to the gut. Clear chicken broth, jello, etc. I take slippery elm pills between meals which is soothing to the lining of the gut. I am trying to eat small meals throughout the day and sometimes drink chicken broth instead of water. I have lost a lot of weight and I am struggling with this. I don’t have a firm diagnosis yet. I have some form of colitis but sure. I also take Florastor twice a day and one Align daily. You are not alone but I know it often feels that way.

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@proudmommmy1128

What do u do if ur trying to recover from c diff and I just moved to a new state and I have no health insurance right now I was on the antibiotic the v one for 7 days and then 14 days and I just finished it 3 days ago and my stomach is killing me I don't have the runny stool or anything but my stomach hurts really bad I have no energy I have the funny taste in my mouth and I just tried starting a new job and I can't get up and go to work like this but my depression is at a all time high I'm just so tired of feeling this way so tired of being sick when does this ever end

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To my knowledge a hospital must treat you if you go to ER. Otherwise try VSL probiotic and stay on it. Research probiotic foods and avoid sugary foods and gluten. Try any calming activity you can. I feel for you and have a brother without insurance having moved to another state. We need insurance in America to cover these situations.

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@musicflowers4u

To my knowledge a hospital must treat you if you go to ER. Otherwise try VSL probiotic and stay on it. Research probiotic foods and avoid sugary foods and gluten. Try any calming activity you can. I feel for you and have a brother without insurance having moved to another state. We need insurance in America to cover these situations.

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One thing I can eat during the worst of flareups is organic chicken broth and jello. Have both at hand and consume them throughout the day. Drink broth instead of water if you can. I agree with poster above regarding avoiding gluten, lactose in milk and a lot of sugar. I take two Florastor and one Align daily. Two slippery elm capsules between meals. Not sure what the ER would do but at least they can stabilize you if you are dehydrated or in a great deal of pain. Otherwise I don’t think they will provide a comprehensive workup. I live in Texas and people here can go to the public hospital and apply for a discount card. I have found all sorts of gluten free crackers and dairy free products at the store. I rarely eat out. I now eat like a baby or like a geriatric patient. All bland basic food. Research Low FODMAP diet. It has not eliminated my diarrhea completely but certainly helps with gas, bloating and pain. If you have an overgrowth of bad bacteria, which can be a residual effect of the CDiff, these bacteria feed on certain foods that are high on certain types of sugars and carbs. These foods are not necessarily bad but just bad for us right now because the “bad bacteria” feed off them and cause the bloating and pain. There is so much I did not know but have had to learn over the past three months to advocate for myself. I have been given very little nutricional advice by doctors who tell you to eat everything or whatever you can tolerate. That creates a vicious cycle because food definitely irritates the colon and feed into these disorders or perpetuates them. I feel for you. I have insurance and am under the care of a GI doctor and there are days I want to pull my hair out. Can’t imagine not having medical attention or guidance. By the way, how were you diagnosed with CDiff and how do you think you acquired it? I think CDiff is now being over utilized. I was told I had CDiff, tested twice and both tests came back negative. I have taken two rounds of antibiotics anyway because the second theory is that I have SIBO. I don’t think that is clear either. Keep us posted.

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