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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In April, I took Clindamycin for a sinus infection. I took 4 a day for 12 days. Within two weeks from completing it, I had Cdiff. I was given Flagyl for 10 days, Within one week, Cdiff was back. I was then given Vancomycin for 10 days. Again, within a week, Cdiff was back. I was then given Vanco for 5 weeks and did the pulse and taper method. I felt great for 3 weeks and thought this method had worked. Unfortunately, Cdiff came back for a 4th time. One week ago, I completed 10 days on Dificid. I pray to God, this RX works. I've looked in to the FMT by capsules. Thirty pills taken at once and the price is $635. Has anyone done FMT using the capsules?

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@pines

In April, I took Clindamycin for a sinus infection. I took 4 a day for 12 days. Within two weeks from completing it, I had Cdiff. I was given Flagyl for 10 days, Within one week, Cdiff was back. I was then given Vancomycin for 10 days. Again, within a week, Cdiff was back. I was then given Vanco for 5 weeks and did the pulse and taper method. I felt great for 3 weeks and thought this method had worked. Unfortunately, Cdiff came back for a 4th time. One week ago, I completed 10 days on Dificid. I pray to God, this RX works. I've looked in to the FMT by capsules. Thirty pills taken at once and the price is $635. Has anyone done FMT using the capsules?

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Hello @pines and welcome to Connect. You may notice that I moved your discussion and combined it with a discussion titled, "Trying to recover from a c.diff infection." I did this so your message would be seen by the many members talking about this diagnosis and so that you could read through some of their previous posts. If you are replying by email, I suggest clicking on VIEW & REPLY so that you will be brought directly to the new location of your discussion.

@pines, it is my understanding that c diff can be difficult to get rid of and to stay rid of. Has your provider discussed with you why you keep relapsing and what your potential options are moving forward if your current treatment does not work?

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@JustinMcClanahan

Hello @pines and welcome to Connect. You may notice that I moved your discussion and combined it with a discussion titled, "Trying to recover from a c.diff infection." I did this so your message would be seen by the many members talking about this diagnosis and so that you could read through some of their previous posts. If you are replying by email, I suggest clicking on VIEW & REPLY so that you will be brought directly to the new location of your discussion.

@pines, it is my understanding that c diff can be difficult to get rid of and to stay rid of. Has your provider discussed with you why you keep relapsing and what your potential options are moving forward if your current treatment does not work?

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I think the next step will be FMT. That is why I asked about the FMT capsules. I'm still praying that the Dificid will work. I finished that RX one week ago.

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@JustinMcClanahan

Hello @pines and welcome to Connect. You may notice that I moved your discussion and combined it with a discussion titled, "Trying to recover from a c.diff infection." I did this so your message would be seen by the many members talking about this diagnosis and so that you could read through some of their previous posts. If you are replying by email, I suggest clicking on VIEW & REPLY so that you will be brought directly to the new location of your discussion.

@pines, it is my understanding that c diff can be difficult to get rid of and to stay rid of. Has your provider discussed with you why you keep relapsing and what your potential options are moving forward if your current treatment does not work?

Jump to this post

I’m sorry that you have this problem as well. The vancomycin failed and now the Dificid that I just finished does not seem to have worked either. The gastroenterologist said that I had to wait to be retested but did not indicate how long. This experience has been beyond frustrating and you wonder if this infection can be eradicated but seemingly you are always going to be colonized with the bacteria to some extent.

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@nerofish

I’m sorry that you have this problem as well. The vancomycin failed and now the Dificid that I just finished does not seem to have worked either. The gastroenterologist said that I had to wait to be retested but did not indicate how long. This experience has been beyond frustrating and you wonder if this infection can be eradicated but seemingly you are always going to be colonized with the bacteria to some extent.

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@nerofish My first test came back negative so I had to go another week prior to retesting. During that two weeks, I lost 10 pounds and was miserable. This was my 4th bout with C-diff so I knew, without a doubt, what it was. I've been off Dificid for 8 days now and pray it works.

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Stick to the diet. The fact that you have gone from diarrhea to semi solid or pencil thin stools means you are improving. I am finding out that it takes a long time (months) for an inflamed colon to heal. Even if you have SIBO, the diet is very similar. Talk to your nutritionist about eliminating complex carbs and rice and potatoes from your diet for a while. Rice was actually giving me diarrhea. I am following the Specific Carbohydrate Diet and went from diarrhea to the type of stool you are describing. To me that has been a huge improvement. But I cannot eat a lot of food I easily ate three months ago.

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@guthealth

Stick to the diet. The fact that you have gone from diarrhea to semi solid or pencil thin stools means you are improving. I am finding out that it takes a long time (months) for an inflamed colon to heal. Even if you have SIBO, the diet is very similar. Talk to your nutritionist about eliminating complex carbs and rice and potatoes from your diet for a while. Rice was actually giving me diarrhea. I am following the Specific Carbohydrate Diet and went from diarrhea to the type of stool you are describing. To me that has been a huge improvement. But I cannot eat a lot of food I easily ate three months ago.

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Having a very depressing day today and looking for support. I started the modified carb diet on my own two weeks ago. Originally did relatively well on it but then have suffered two days with bouts of diarrhea. I will see a nutritionist for the first time Friday so I am probably not doing it correctly, but it seems like random things give me diarrhea and I cannot make heads or tails of my food journal. I continue to lose weight. Will see GI doctor next week again but I feel so discouraged again.

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@guthealth

Having a very depressing day today and looking for support. I started the modified carb diet on my own two weeks ago. Originally did relatively well on it but then have suffered two days with bouts of diarrhea. I will see a nutritionist for the first time Friday so I am probably not doing it correctly, but it seems like random things give me diarrhea and I cannot make heads or tails of my food journal. I continue to lose weight. Will see GI doctor next week again but I feel so discouraged again.

Jump to this post

Don’t get discouraged … this illness sucks but you unfortunately have to roll with the punches until you improve. I try not to think about it too much but it can be overwhelming at times.
Milk seems to be a prob for many after they’ve had c-diff but just keep documenting and hang in there –

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@nerofish

Don’t get discouraged … this illness sucks but you unfortunately have to roll with the punches until you improve. I try not to think about it too much but it can be overwhelming at times.
Milk seems to be a prob for many after they’ve had c-diff but just keep documenting and hang in there –

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Thank you. I think I would feel better if I could pinpoint why I suddenly have diarrhea. I can’t seem to be able to cintrol what happens to my body.

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@guthealth

Thank you. I think I would feel better if I could pinpoint why I suddenly have diarrhea. I can’t seem to be able to cintrol what happens to my body.

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I don’t even have a definite diagnosis yet.

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@pines

In April, I took Clindamycin for a sinus infection. I took 4 a day for 12 days. Within two weeks from completing it, I had Cdiff. I was given Flagyl for 10 days, Within one week, Cdiff was back. I was then given Vancomycin for 10 days. Again, within a week, Cdiff was back. I was then given Vanco for 5 weeks and did the pulse and taper method. I felt great for 3 weeks and thought this method had worked. Unfortunately, Cdiff came back for a 4th time. One week ago, I completed 10 days on Dificid. I pray to God, this RX works. I've looked in to the FMT by capsules. Thirty pills taken at once and the price is $635. Has anyone done FMT using the capsules?

Jump to this post

Where can one get FMT capsules?

REPLY
@guthealth

Thank you. I think I would feel better if I could pinpoint why I suddenly have diarrhea. I can’t seem to be able to cintrol what happens to my body.

Jump to this post

I am having a similar problem’slrhough i tested positive for c diff both times that ii waa tested. I am seeing an infectious disease specialist next Monday so I’ll let you know if the doctor has anything informative to share.
I inquired about a study using the fecal pills and the study requirements did not allow newly diagnosed individuals. The fecal transplant via colonosccopy seems to available in different states and i may seek out someone who has experience with the procedure next.
Did you get tested for all the usual suspects ya including giardia ?

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