Concerned Post-FMT

If you have had or are considering an FMT please share your experiences here.
cdaleguy
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Concerned Post-FMT

Postby cdaleguy » Mon Feb 20, 2017 12:20 pm

Good morning everyone. I had my FMT on Friday afternoon. Everything went smoothly. It was done via endoscopy and about 500 ccs was placed in.

Saturday I felt dizzy and some nausea but stools were okay. Yesterday I started having diarrhea and it has continued into today. I'm very emotional about it as, I'm sure many of you know, I think physicians tend to over promise on FMT expectations. My physician told me most people feel better in two to three days. Me? I feel like I'm back into full blown c diff.

Any insight? I called the ID Doctor's office and the nurse who answered the phone says this is "normal for the first week or two"...oh REALLY? That's a different tune than before I had the procedure.

Sorry. I'm feeling very frustrated.

Tsc1964
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Re: Concerned Post-FMT

Postby Tsc1964 » Mon Feb 20, 2017 3:14 pm

So sorry to read this ive kept you in prayers. Its still early after procedure altho i think it was irresponsible of dr to attempt without a course of abx. Know your trying so hard get over this before baby arrives. I know you said they dont do colonscopy style fmt in your area but if it were me i would try very hard to find a place you can get to that does or if it is a relapse possibly difcid taper may work. I know for me im awaiting insurance approval an donor testing am staying on vanco until 12 days prior then switching to difcid before fmt, want every possible chance of getting rid of as much as i can prior to fmt. At this point if i was you mayb wait few days unless you progress an see if it takes hold but in meantime id be proactive in getting a game plan together. Continued prayers for you i know how hard depressing an life changing this illness is.
Last edited by Tsc1964 on Tue Feb 28, 2017 12:15 am, edited 1 time in total.

beth22
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Re: Concerned Post-FMT

Postby beth22 » Mon Feb 20, 2017 10:41 pm

Did you have the procedure done via upper endoscopy? How long before the FMT did you discontinue antibiotics?

cdaleguy
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Re: Concerned Post-FMT

Postby cdaleguy » Thu Feb 23, 2017 2:08 pm

Sorry for the delay in responding.

I had the procedure done via endoscopy into my jejunum. (500 ccs was put in.) I was not on a course of antibiotics before my procedure. I didn't like this plan and expressed that to my Infectious Disease doctor. But she is a PhD C Diff researcher turned physician. She had a very specific way she does it and I did it her way.

I've had watery D for five days now. I'm quite certain that the C Diff test I put in this morning will be positive for toxin. I told the ID doctor that I would like to do things *my* way this second time around if it is positive...which is to have it put in after a full course of Dificid and to have it put in my colon rather than jejunum. If she insists on putting it in my jejunum then I want it in my colon *also*. Those are my demands. I think, at this point, they'll let me have my way.

I am really, really ready to be done with C Diff. I have less than four weeks until our baby arrives so I feel like I have a timer running to get cured.

cdaleguy
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Re: Concerned Post-FMT

Postby cdaleguy » Thu Feb 23, 2017 5:04 pm

Test was negative. Very surprised after FIVE days of watery D.

My GI says to take bentyl three times a day and let him know how it goes.

roy
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Re: Concerned Post-FMT

Postby roy » Thu Feb 23, 2017 6:43 pm

You have had a LOT of c.diff treatment over a very short period of time!
What you have had is the type of treatment that most posters undergo over at least 6 months of c.diff related symptoms (full on symptoms, not just positive tests)
Very rarely you had D but now it's worse than ever.
I would suspect all that treatment would upset most people's gut.
I know you want to be well by the time baby comes but overtreating is just as bad and can even be worse than not treating mild symptoms.
Let your gut repair itself.

amyc
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Re: Concerned Post-FMT

Postby amyc » Thu Feb 23, 2017 8:12 pm

I'm glad you got the negative test. If it was the toxin test you might want to do it again since those are only about 80% accurate just to be sure. If you get another negative you could try questran or colestipol tablets to firm up your stools. Hopefully your gut is just adjusting to the new flora and the trauma of all the treatments like Roy said.

georgina
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Re: Concerned Post-FMT

Postby georgina » Fri Feb 24, 2017 12:58 am

Having a few days of D after FMT is not unusual. This top-down FMT can get you in trouble , as you can end up with SIBO after it. I had a nasogastric procedure done in november2015 but unfortunately failed because my doc didn't wanted me to take meds prior to it but it seems li8ke yours is going to be successful since you are testing negative. As Amy suggested , you should try something to settle down your gut and bulk up your stool ,a binding agent like questran.

beth22
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Re: Concerned Post-FMT

Postby beth22 » Fri Feb 24, 2017 2:53 am

I got SIBO from having an NG transfer as well, although I had a colonoscopy done when the NG failed. I tested positive about a month later. If this continues, I would test again and if you do decide to do another FMT, I really would ask for a colonoscopy transfer and not introduce more bacteria into your small intestine. Hopefully, this will settle down.

cdaleguy
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Re: Concerned Post-FMT

Postby cdaleguy » Fri Feb 24, 2017 3:21 am

Beth, do you mean that you were c diff negative for a while after your FMT but ended up testing positive at 1 month?

Roxanne
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Re: Concerned Post-FMT

Postby Roxanne » Mon Feb 27, 2017 9:48 pm

Tsc1964 - Did you do Difficid for 10 days after the FMT and if so, what day did you start, the initial FMT day?

My thought was taking Difficuid since I can't take Vanco.

Tsc1964
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Re: Concerned Post-FMT

Postby Tsc1964 » Tue Feb 28, 2017 12:13 am

Roxanne,

Sorry if confusing post. I am currently on vanco , have not had my fmt yet awaiting insurance approval an donor testing. Im switching to difcid 12 days prior to FMT i have to he off antibiotics 48 hours prior to procedure then off meds praying for good.
Many on the site have had alot of success with it.

Roxanne
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Re: Concerned Post-FMT

Postby Roxanne » Tue Feb 28, 2017 2:07 pm

I was on Difficid, There was a mix up on ordering from the bank, luckily caught right before drinking the prep. (First time Dr and hospital used a bank) Rescheduled, so have been off Dificid for 2 weeks with a no fiber, sugar diet. Hoping being off Difficd this long the FMT will still be successful.

roy
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Re: Concerned Post-FMT

Postby roy » Tue Feb 28, 2017 2:15 pm

Roxanne
If you have full on c.diff D it's normal to be on antibiotics to reduce the c.diff load before an FMT.
There's not much chance of the FMT working if you have a gut full of c.diff.
FMT prevents recurrence, by reseeding the gut with good flora, it's not normaly used as a cure by itself.

Kbacks
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Re: Concerned Post-FMT

Postby Kbacks » Tue Feb 28, 2017 4:28 pm

I'm new to this forum and forums in general. I hope I'm starting out ok. I have had cdiff for 6 weeks and have yet to see a gastroenterologist. My general practitioner has been working with the Dr I'm going to on Monday and I'm taking Flagyl and vancomycin. The Gastro Doctors are slammed and this is as soon as I can get seen. Frustrated, sad and sick.


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