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

@lindac61

So glad it seems like you may have solved it! Wishing you the best. After reading the posts this morning I did go purchase S. Boulardi and will start taking that to help. I had no idea there were so manh of us suffering this way!!

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@lindac61 I had never even heard of Cdiff before I got it. At first, I thought I had the flu. And then the Ecoli was going around from romaine lettuce. And I always use romaine so I thought for sure it was Ecoli. I waited about 10 days before I ever went to the doctor. By then, the Cdiff really had taken over my body. The 10 days on Flagyl didn't even faze it. And then 10 days on Vancomycin and it came right back. And then 6 weeks on the Vanco pulse and taper. And finally Dificid (fidaxamicin) which I asked my GI to prescribe. If that didn't work, I was ready to do the FMT. I'm amazed now when I hear how many people have had it. And all ages. We have friends whose daughter got it from taking meds for a UTI that turned in to a bladder infection. She a senior in high school. Be sure to bleach and wipe down your bathroom area. The Cdiff spores can live for months. My hands were so dry from hand washing and cleaning products. I'm sorry you have to wait until Monday to get on something. And hopefully, Dificid will work for you.

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@pines

@lindac61 I had never even heard of Cdiff before I got it. At first, I thought I had the flu. And then the Ecoli was going around from romaine lettuce. And I always use romaine so I thought for sure it was Ecoli. I waited about 10 days before I ever went to the doctor. By then, the Cdiff really had taken over my body. The 10 days on Flagyl didn't even faze it. And then 10 days on Vancomycin and it came right back. And then 6 weeks on the Vanco pulse and taper. And finally Dificid (fidaxamicin) which I asked my GI to prescribe. If that didn't work, I was ready to do the FMT. I'm amazed now when I hear how many people have had it. And all ages. We have friends whose daughter got it from taking meds for a UTI that turned in to a bladder infection. She a senior in high school. Be sure to bleach and wipe down your bathroom area. The Cdiff spores can live for months. My hands were so dry from hand washing and cleaning products. I'm sorry you have to wait until Monday to get on something. And hopefully, Dificid will work for you.

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Thank you! Yes, I had gone 3 weeks before going to Dr and finding out I had C-diff. I actually went to a walk in clinic after 4 days and they just said it was a reaction to something I ate!! Told me to do BRAT diet. I could not go to Gastro for over two weeks so I guess I must have a pretty strong case of it.
I know what you mean about dry hands! Washing them all the time in hot water does dry the skin for sure.
When I see the dr this week I will definitely request the Dificid!

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@lindac61

Thank you! Yes, I had gone 3 weeks before going to Dr and finding out I had C-diff. I actually went to a walk in clinic after 4 days and they just said it was a reaction to something I ate!! Told me to do BRAT diet. I could not go to Gastro for over two weeks so I guess I must have a pretty strong case of it.
I know what you mean about dry hands! Washing them all the time in hot water does dry the skin for sure.
When I see the dr this week I will definitely request the Dificid!

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@lindac61 You're lucky you could get in with a gastro within two weeks. I had to wait for two months to get in to see my gastroenterologist. I did get to see his NP after one month. At that time I was having my 3rd relapse and doing the Vanco taper. After I saw the gastroenterologist, we decided that I would do fidaxamicin (Dificid) if I relapsed again. It's an expensive drug. Over $4,000 for 20 pills. My insurance wouldn't pay their share until I had tried vancomycin. Anxious to hear what you find out tomorrow. Wishing you well.

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@pines

@lindac61 You're lucky you could get in with a gastro within two weeks. I had to wait for two months to get in to see my gastroenterologist. I did get to see his NP after one month. At that time I was having my 3rd relapse and doing the Vanco taper. After I saw the gastroenterologist, we decided that I would do fidaxamicin (Dificid) if I relapsed again. It's an expensive drug. Over $4,000 for 20 pills. My insurance wouldn't pay their share until I had tried vancomycin. Anxious to hear what you find out tomorrow. Wishing you well.

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I have not actually seen the Dr, only his NP 😊. Like you, it would be months before I could actually see him. I will keep you posted.

Liked by pines

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Well, my dr wanted to do the vanco taper, for my 2nd reoccurrence. I asked if we could skip it and go straight to dificid, which she agreed. I pray it works, I'm going to really adjust my diet and hope that between dificid, diet and s. Boulardi, i will nip this once and for all.. although things haven't been as bad as before, they haven't been great either. I pray this works. Good luck to everyone else trying to beat this nasty bug!

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@femalegolfer

Well, my dr wanted to do the vanco taper, for my 2nd reoccurrence. I asked if we could skip it and go straight to dificid, which she agreed. I pray it works, I'm going to really adjust my diet and hope that between dificid, diet and s. Boulardi, i will nip this once and for all.. although things haven't been as bad as before, they haven't been great either. I pray this works. Good luck to everyone else trying to beat this nasty bug!

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@femalegolfer I hope it works for you! Funny story, when I was first hospitalized in September and diagnosed with cdiff, the first time a gastro doctor visited me he said, "I see you have the 'bastard bug'"! Never having heard of cdiff before, I was stunned! Little did I know how right he was! I am scheduled for a colonoscopy and fmt on Monday, March 25. I am not looking forward to it. Please let me know how you do on dificid. Best of luck!

Liked by femalegolfer

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@femalegolfer

Well, my dr wanted to do the vanco taper, for my 2nd reoccurrence. I asked if we could skip it and go straight to dificid, which she agreed. I pray it works, I'm going to really adjust my diet and hope that between dificid, diet and s. Boulardi, i will nip this once and for all.. although things haven't been as bad as before, they haven't been great either. I pray this works. Good luck to everyone else trying to beat this nasty bug!

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@femalegolfer So happy to hear you were given Dificid. I did the 10 days Vanco, relapsed and then the Vanco taper but nothing worked until I did the 10 days on Dificid. I took the last one on Oct. 26, 2018. I'm still worried on days when I eat the wrong foods, like yesterday. Cabbage seems to do a number on me. I've heard that some doctors no longer prescribe Flagyl for the first occurrence and go straight to vancomycin. I wish more doctors would prescribe Dificid with the 2nd occurrence. It's terrible we go through so much before we get the one that seems to kill the Cdiff spores. My next step would have been the FMT. Please keep us updated how you're doing.

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@ngorman25

@femalegolfer I hope it works for you! Funny story, when I was first hospitalized in September and diagnosed with cdiff, the first time a gastro doctor visited me he said, "I see you have the 'bastard bug'"! Never having heard of cdiff before, I was stunned! Little did I know how right he was! I am scheduled for a colonoscopy and fmt on Monday, March 25. I am not looking forward to it. Please let me know how you do on dificid. Best of luck!

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@ngorman25 Is there a reason they're waiting until March 25th? I feel so sorry for you if you have to battle Cdiff most of March before you get help. Or will you be on vancomycin until the 25th? Please keep us posted how you do after the FMT. I've read it has a 85% cure rate.

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@pines

@ngorman25 Is there a reason they're waiting until March 25th? I feel so sorry for you if you have to battle Cdiff most of March before you get help. Or will you be on vancomycin until the 25th? Please keep us posted how you do after the FMT. I've read it has a 85% cure rate.

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@pines I have been on my second vancomycin taper since early February. I seem to do well on vancomycin until I stop using it. I will be down to one pill a day by the 25th. I will definitely keep you posted after it's done. I am so not looking forward to it.

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@ngorman25 I too did great while I was on vancomycin and also on the vanco taper for 6 weeks. Even when I was taking it every other day. But three weeks after ending it, I had my 4th relapse. That's when I took Dificid last October. I've never been through so much. Cdiff was so debilitating. I certainly hope the FMT works for you. I had decided to do the FMT if Dificid didn't work.

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@pines

@ngorman25 I too did great while I was on vancomycin and also on the vanco taper for 6 weeks. Even when I was taking it every other day. But three weeks after ending it, I had my 4th relapse. That's when I took Dificid last October. I've never been through so much. Cdiff was so debilitating. I certainly hope the FMT works for you. I had decided to do the FMT if Dificid didn't work.

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@pines Well, I asked my doctor what happens if the fmt doesn't work? His answer was "we do it again"! And I thought that doesn't sit well with me! So, I don't know anymore. I am so disgusted.

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@kathymeyers

Hello. After my second dose of Chemo I got C-Diff and it was very hard to get rid of it.
But I was told not to take Imodium. You need to be in the hospital and let them give you IV therapy

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Anyone with C. Diff or even chronic diarrhea really must try Florastor. It is a yeast Saccharomyces boulardii (S. boulardii) and I've talked to two different people with Chrohn's disease who use. I used after I had to be on several different antibiotics and could not get rid of irritable bowel in which I had painful diarrhea which would empty me out once a week. Most doctors do not know about it. FLORASTOR!

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@pibacher

Anyone with C. Diff or even chronic diarrhea really must try Florastor. It is a yeast Saccharomyces boulardii (S. boulardii) and I've talked to two different people with Chrohn's disease who use. I used after I had to be on several different antibiotics and could not get rid of irritable bowel in which I had painful diarrhea which would empty me out once a week. Most doctors do not know about it. FLORASTOR!

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@pibacher My gastroenterologist also suggested taking Florastor after my 3rd bout of Cdiff. I started taking it and after my 4th relapse, I took it along with Dificid (fidaxamicin) which seems to have killed the Cdiff spores. I continue to take Florastor or another brand of S. Boulardii every single day. I truly believe it has helped in my recovery.

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@ngorman25

Can someone please tell me why we have to have 3 or more relapses before a doctor will offer fmt? If fmt is so successful, why not offer it after the first relapse? It blows my mind! Personally, the more I think about it, I think the makers of vancomycin and the other drugs they use are responsible. After all, think of all the antibiotics we take before fmt is offered. Makes me mad! My guess is it's about money. If​we did fmt after the first relapse, we wouldn't spend all this money on antibiotics first! Plus, who knows what we will have to deal with health wise after taking hundreds of vancomycin?

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I had horrible tinnitus while in Vanc, and had a hearing test and had hearing loss. After getting off of vanc, I was tested again and it’s better.. plus the ringing is better. I think vanc by IV is worse for hearing than the capsules. I took capsules. I read it can be permanent. I’m hoping I don’t have to go back to the ear doc again.

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@bamafan94

Hi Tammy,

My 4 year old daughter just tested positive for C Diff……We are a little over 1 week past her first 14 day flagyl regimen and the diarrhea has returned. I am getting very concerned. I am from North Alabama too, so Huntsville is just right down the road for me, does the doctor you mentioned accept patients as young as 4? Additionally, does anyone else have any experience/advice for someone with a 4 year old kid with C Diff?

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My best advice is avoid popcorn, seeds, nuts, skins, corn. Child probiotics.

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