Is this thing forever?!

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Medena
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Is this thing forever?!

Postby Medena » Sat Feb 03, 2018 2:35 pm

Guys... I am so confused. I have a feeling after reading so many websites that this bacteria will live in the intestine forever as a spore once you had the infection.. Lurking for the right opportunity to strike again. Please tell me I'm wrong... Do the spores ever go away? What am I supposed to do if I need antibiotics in the future?! Can it come back after months, even without antibiotics usage?! What about my family, maybe they have it now too...

This is such a nightmare, I feel my life is ruined... I became freaking paranoid since I got this diagnosis. I know there are worse diseases than this and I thank God my loved ones and I haven't got those... But this is so difficult to cope with. I feel contagious and vulnerable, and afraid of a simple infection I might face in the future, which will surely happen since I'm 30...

I just wanna cry all the time because I feel helpless.

beth22
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Re: Is this thing forever?!

Postby beth22 » Sat Feb 03, 2018 5:58 pm

A lot of people have spores for c diff in their digestive tract and they don't even know it. My mom, who is now 97, had c difficile about ten years ago with some relapses and she has been able to take antibiotics without relapsing. She takes Prilosec every day too, but she also has been on a daily probiotic called Digestive advantage, which has some kind of spore forming bacteria. I think that is what is protecting her, but I could be wrong.

If you have to take antibiotics in the future, try to take the most narrow spectrum one that will work. Ask for a culture to see which antibiotics would work so you don't take one that won't unnecessarily. I would also take probiotics when you are on antibiotics and then for a few weeks afterwards too.

Medena
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Re: Is this thing forever?!

Postby Medena » Sun Feb 04, 2018 4:01 am

Thanks for your reply... So there is hope, Godwillingly it won't come back if on antibiotics...

MKW
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Re: Is this thing forever?!

Postby MKW » Sun Feb 04, 2018 12:40 pm

Hi, a lot of us suffer from ongoing anxiety due to the fears you have described. The fact is there are many people carrying C Diff, they just don't know it, or know it yet. You Know. It is absolutely possible you will carry the spores forever, there is no way to know. So I have found the best way to deal with this was coming up with sanitary habits I could live with, and having a plan if I deal with he need for antibiotics in the future. (Actually, I have sinus infection symptoms right now and may deal with this issue for the first time since my FMT in March 2017. I am currently using saline spray and trying inhaling garlic steam.) The CDiff Foundation website has good instructions for home care. Going forward, if you feel you want to minimize spore contamination after BM's, wear vinyl or nitrile gloves while wiping, shut the lid when flushing. wipe down the toilet with 10% bleach after... do your laundry separate, etc. These actions made me feel "in control" of whether or not I expose loved ones. Also, discuss your plan of care with your practioners that you may need in the future, like culturing and determination of effective narrow spectrum antibiotic. They prescribe broad spectrum to avoid all that. There is so much you can do to have and keep control over your health and life, even though you must be concerned about this in your future. The other thing that is REALLY important to know, is there is major research and development into treating CDiff. It is the number one hospital aquired infection in the US now, so costs the health care system ridiculous amounts of money. There are mulitiple drugs in stage 3 trials that will help with this condition. Treatment options and efficacy will not stay stagnant. In three to five years or so there will be a new first line antibiotic that is narrow spectrum, and multiple FDA alternatives for microbiota restoration that are FDA approved. If Rebiotix and Seres Therapeutics products pass trials, I have read they will be available the end of 2019. I have read Ridinilazole will be on the market in three years. I have found researching these new treatments in development gives me hope too. The best thing you can do is educate yourself as much as possible. I have also found by continuing to participate on this board and support others going through this, I stay informed about current treatment practices and improve my understanding of this infection.

Medena
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Re: Is this thing forever?!

Postby Medena » Sun Feb 04, 2018 6:16 pm

Thanks for the info.
I am hoping they will find a more efficient way to treat this infection soon... Something that can cure it so it doesn't return. Godwillingly.
Btw I have a feeling all people have this bacteria in their intestines, just not in the quantity people who suffered an active infection do. The percentage they usually mention sounds unreal, because I read it's everywhere, in the soil, animal products, not to mention hospitals and community in general.
I think this bacteria strikes when people's immune system goes really weak, plus antibiotics that make a mess in the gut.
Perhaps I'm wrong.

MKW
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Re: Is this thing forever?!

Postby MKW » Sun Feb 04, 2018 8:16 pm

I was just at a GI appointment Tuesday with a GI specialist I respect. She specializes in IBS which I have following my FMT and we have now determined I have SIBO as the root cause of my symptoms. She’s not a C Diff expert. But she just said to me - I think probably almost everyone carries some amount of C Diff. And I said so what is it really that makes some of us develop infection and some not... do some of us carry worse strains?... and she said no that’s not the cause, and as she has said to me on another occasion, she believes active infection occurs primarily due to Dysbiosis, period. She believes we are all carrying or being exposed to c Diff regularly. It is the lack of proper levels of other good bacteria that allow the c Diff overgrowth and toxin production. So you are not wrong! :-)

Medena
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Re: Is this thing forever?!

Postby Medena » Mon Feb 05, 2018 4:57 am

Specially when they said 50% of newborns carry the bacteria... Diaper changing is messy. For sure it would be more spread.


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