your experiences?

[tonia]

Hello everyone. I hope you are all doing well.

I have a question that I am hoping someone who has had the same experience can help me with. I am almost 9 months out from my FMT and have tested negative four times. Most days I only "go" once or twice. Which is a vast improvement over the 15-20 times a day I had for 18 years, so all is well...to a point. For those of you that have been left with less than stellar stools after the destruction of c diff, how do you convince yourself that it is truly gone, you are no longer a danger to anyone else and move back into normal life? I ask this because even though I only go up to twice a day, it is very loose. The dr has tested 4 times to make sure it was not a low level infection. I have also been tested for all those other things, as well as celiac. Because of it being lose, I am having a very difficult time accepting that it is just my new normal and that I no longer need to be so extremely careful (hand washing and good hygiene still being practiced). This is still ruling my life and I was just curious how those of you in this position finally "threw caution to the wind", within reason obviously. Is it possible to truly not have any c diff in my body? I have tried reading so much on the pcr test and what it ACTUALLY looks for. There seems to be some confusion on that as to weather it is the actual bacteria, the dna of the bacteria, or the dna of the toxins. I have been told that if the pcr is negative, especially this far out, that I no longer have it in me. Any thoughts on that? I have read and researched so much that I am on knowledge overload and can not make sense of any of it.
Any thoughts, or advice based on your experience would be great. Tired of spinning my wheels here, and want to just put it all behind me somehow.
Thank you so much!

[roy]

Even if you have c.diff in your gut it is NOT a disease.
There's many strains of c.diff, some produce toxins some do not.
As for testing the only test that looks for the bacteria is a culture test but it's next to useless because it picks up the type of c.diff that does not need treating as well as the toxin producing strain.
PCR looks for the DNA from toxin B.
The problem with all types of test is that even if it's positive treatment might not be needed.
The only reason a vaccine is possible is that the human body can become immune to c.diff toxins.
In future a vaccinated person will still become infected with c.diff but the vaccine has taught the immune system not to react to the toxin and it will not become a disease.
For many people that immunity is already there because of a previous encounter with c.diff.
Lack of symptoms is the only true indication that it's time to return to normal and move on from c.diff.

[AllisS]

Even if you currently have C. diff (which it doesn't sound like you do) you're not a threat to anyone else. Thorough hand hygiene remains key both to you protecting yourself and to others protecting themselves. Not exactly clear on why you might think you'd be a threat now, in the first place ... ?

[amyc]

Did you mean to say you had BMs 15 to 20 times a day for the last 18 years? If you have had 4 negative C diff tests since your FMT I think you should feel confident in those results. 4 negative PCR tests mean you don't have C diff. I would recommend taking colestipol tablets or questran powder to see if it firms up your stool.

[susant]

I wonder why some get immunity after Cdiff and then people like me get it again after taking antibiotics 16 months after the first bout with Cdiff? Not fair!

[Bobbie]

No explanation of why some get c diff again and some don't.

Get involved in "non c diff" activities - exercise, reading, creative writing.

C diff has stolen enough of your life. Move on. Know well your fears. Am on an antibiotic for a foot infection.

[Ashley20]

My son tested positive for toxins A and B via the antigen test and his new pediatrician refuses to retest him. His stools are completely normal and he was never treated. I change his poop everyday for 13 months now and have not been reinfected. I still take my precautions but i try not to overthink it too much anymore. He plays on the floor and crawls everywhere we go. I only wash his hands once a day and he has eaten off the floor many times at church when he drops his cheerios...at first i thought i wouldn't be able to handle it but he hasn't got sick or needed antibiotics. He often sticks his hands in my mouth after playing on the floor but i can't help to nor care anymore.. i love him so much and i want him to grow up like any other baby. If i get cdiff again i have decided i will just deal with it and i need to live my life now and enjoy everyday as much as possible. Im so happy to hear you have improved so much, i know you will heal as time goes by, its not easy but you have made alot of progress... ((((hugs))))

[amyc]

Good for you, Ashley! Enjoy your little guy and all the craziness haha. I used to travel with my kids when they were little, and that was before the invention of the car seat-stroller, so mine were crawling and toddling around airport floors quite a bit when they were little, and in church, and even fast food restaurant ball pits, which I kind of shudder to think about now haha. But they are now 19 and 20 and happy, healthy young people.

[roy]

No 100% proof yet because c.diff is "a new" disease but it's probable that babies that are colonised with c.diff and their immune system kicks it out might have varying degrees of life long immunity to it.
Let your kids play in the dirt!
Today's super clean parents are denying their kids nature's immunity building blocks.

[Ashley20]

That would be great if he does become immune to the cdiff....in the meanwhile i do give him daily probiotics in his milk and he loves yogurt. Lately i bought him the kids Pro bugs Kiefer drink from Lifeway and he loved it. The kids kiefer is actually more tart and sour than the adult one ..it has less sugar. He likes to suck on lemons so i guess the keifer is like candy to him..lol

[ramu]

Hello Tanya. I am not an expert, just someone with the same struggle as most of you. In case you need a laugh, I'll admit I keep a photographic journal of all my bowel movents, describe them and flushing qualities. I use words like ribbons, pencils, loose, formed, great, and MEH! Wet D of course, gets a big frownie face. Two times a day is great. 9 months is great. 4 negative pcr tests is outstanding. If you are gut-pain free, live life and enjoy it.