How long after FMT is chance of recurrence VERY unlikely?

If you have had or are considering an FMT please share your experiences here.
MKW
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How long after FMT is chance of recurrence VERY unlikely?

Postby MKW » Tue May 16, 2017 2:07 pm

I had an FMT done 3/2/17 that has thus far been successful, which is about 10 ½ weeks ago. I have had a variety of GI issues since, but no C Diff recurrence. I feel very fortunate, and feel I have healed greatly during this time.
My doctor considers a patient cured at 8 weeks after the procedure. However, I have read some consider it to be 12 weeks. One study I reviewed online showed a 3% recurrence rate between 8 to 12 weeks for example.
My doctor does not test to prove “cure”. I tested negative one time about a week and a half before a recurrence, so a negative test would not have any meaning in my mind anyways.
After having been in the small percentage of unlucky people for so long, I tend to assume I will continue to be, and I have trouble feeling hope because I can’t emotionally take the disappointment. But at some point I want to be able to tell myself I am in the clear.
Many posters on here are so MUCH more knowledgeable than me, have been participating on here for years, and know of so many real cases of FMT success and failure.
Please let me know if you have an opinion about when an FMT should be considered a success. Thanks! --- Melanie

georgina
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Re: How long after FMT is chance of recurrence VERY unlikely?

Postby georgina » Tue May 16, 2017 11:53 pm

The classic relapse usually happens in the first month after meds , at 10 weeks is considered that the patient is in the "safe zone" . There were a few exceptional cases when posters relapsed a longer period after FMT , like in my case .I relapsed with full blown D ,7 months after FMT but I was never cured because I never felt well during that period of time. Also , my FMT was done trough nasogastric tube and the doctor didn't wanna prep me with meds prior to the infusion.

Davidtm
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Re: How long after FMT is chance of recurrence VERY unlikely?

Postby Davidtm » Wed May 17, 2017 12:33 am

Hey if it makes you feel better I'm riding right there along with you. Had my fmt about a week before you! Glad to hear you're still doing well. I wonder if we read the same study. I remember the 2.7 to 3 percent you're mentioning. the one I read said that that small percent was between 1 and 3 months though and not 8 to 12. So much mixed information with this disease and varied studies but one theme I've picked up from it all is it's really uncommon to have an issue after 6-8 weeks of fmt and even though it does happen it's rare. We just need to stay optimistic! Each day forward is good. Tired of being in the rare part of statistics too so I can commiserate with you on that. I've read some posts in this forum that date back a long time and there was a 70 day milestone a lot of people aimed for to breath a little easier. It's hard to know when to feel it's a success until more and more time goes by. one thing my therapist has me consider is to not focus on the rare instances. 7 billion people there are bound to be some extreme cases of extreme cases. better to focus on the odds being in your favor! A lot of people would be singing and dancing at this far out post treatment.
I wish you continued health! And an uneventful recovery!

beth22
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Re: How long after FMT is chance of recurrence VERY unlikely?

Postby beth22 » Wed May 17, 2017 1:44 am

Anything is possible, but usually you need a cause. I relapsed 7 months after FMT because I took antibiotics. Last year, I had not tested positive for years and then tested positive because I needed to take antibiotics in the hospital. However, it was not a full-blown infection and I did not need to treat with medication. I did some FMT home enemas and was ok.

I would not worry too much. I had lots of ups and downs, food intolerances, etc. Eat what agrees with you, try new foods slowly and stay away from antibiotics for as long as you can. Some people can tolerate then, others can't.

MKW
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Re: How long after FMT is chance of recurrence VERY unlikely?

Postby MKW » Thu May 18, 2017 11:57 am

Thank you for the replies :-) Yes, there is so much mixed information...it is one of the hardest parts of coping with this illness. And I have trouble staying grounded and objective about my own case!

Bobbie
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Re: How long after FMT is chance of recurrence VERY unlikely?

Postby Bobbie » Fri May 19, 2017 1:56 pm

We all have problems coping with the uncertainty of c diff.take it "a day at a time."

Tsc1964
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Re: How long after FMT is chance of recurrence VERY unlikely?

Postby Tsc1964 » Sun May 21, 2017 12:20 am

Im.not far behind you on my fmt. Tomorrow will be 2 months. Im even scared of typing that. Ive had under dozen times of D an my GI ordered a test. But by time i picked it up was back to one a day. Not formed all time an smell freaks me out..i threw test in closet because i dont feel sick. But then agan i would like to know for sure but freaks me out to take test. Im.eating more . But sure hard jus wondering waiting. I stay almost to busy sometimes so dont think to much.


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