Die off?

If you have had or are considering an FMT please share your experiences here.
susant
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Die off?

Postby susant » Fri Jul 22, 2016 7:43 pm

I am having all of the same Cdiff symptoms again a week after fmt. Mucus, frequent stools, cramping, etc. I was tested today which was negative though I'm only 10 days off of vancomycin so it could be false. I was doing ok before today. I called dr Shepard and his nurse said most of their patients experience die off about a week after infusion. Anyone had this happen after fmt? I asked her why it takes so long and she said because it takes a while for the body to recognize that there is new flora in there. I've always read that people get better about a week after fmt not worse. I'm a mess thinking this fmt was a failure... Any thoughts? Thanks everyone!!

amyc
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Re: Die off?

Postby amyc » Fri Jul 22, 2016 7:47 pm

Did the nurse offer any suggestions to help with symptoms while you wait through the rough days?

susant
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Re: Die off?

Postby susant » Fri Jul 22, 2016 7:51 pm

Nope. Just to wait it out and if it's not Better next week we would re test and talk about our options

gwang
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Re: Die off?

Postby gwang » Fri Jul 22, 2016 8:00 pm

Susan, I had all those symptoms include systematic ones (heavy insomnia, mucus, urgency, etc...) after using ABX to rid of C-diff and having an FMT couple days later. It took 4 months to somewhat calm down, but I'm still getting heavy symptoms, but not as bad as before. You are most likely going to test negative but still have PI-IBS symptoms.

beth22
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Re: Die off?

Postby beth22 » Fri Jul 22, 2016 9:28 pm

Your negative was probably not a false negative because whatever vanco you took would have been washed out by the prep for the colonoscopy transfer. I believe you said you had it upper and lower. I had terrible PI-IBS after my FMT - worse symptoms than the c diff in fact. For me, it turned out to be SIBO, but I know others have had issues too. If I remember right, it did start about a week later because I contacted Dr. Stollman and thought I had relapsed. Test was negative as well and so were subsequent tests. Got a lot of food intolerances too.

georgina
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Re: Die off?

Postby georgina » Sat Jul 23, 2016 7:35 am

Think positive Susan , it worked !! Even if you had a bad day , that doesn't mean that all days will be like that , hopefully things firm up tomorrow. Remember that FMT is not a miracle cure!

susant
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Re: Die off?

Postby susant » Sat Jul 23, 2016 10:14 am

I think it failed.. Mucus only four times last night. I'm at a loss. I'm wondering if I should just let it kill me at this point

roy
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Re: Die off?

Postby roy » Sat Jul 23, 2016 10:29 am

FMT is NOT an instant procedure that returns you to normal.
It puts a very very small amount of good flora back into your gut.
It then has to grow and multiply.
When you remember that it takes a baby 2 years from birth with a sterile gut to grow gut flora that resembles a mature flora it's no wonder that it can take a long while for your new gut flora to become active.
Your recent test was negative and mucous can simply be IBS.
Anything you see over the next few weeks is normal except profuse watery D more than 3 times a day.
Testing is not advised as the test can be positive while the new flora battles any remaining c.diff.

susant
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Re: Die off?

Postby susant » Sat Jul 23, 2016 10:47 am

I understand that I really do but passing only mucus and cramping really not a good sign for me... I've never seen where others experienced that and it not been Cdiff

susant
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Re: Die off?

Postby susant » Sat Jul 23, 2016 11:06 am

Ok sorry for the play by play but I just went and it was totally normal... Really? How does that happen? I always know it's Cdiff by sheer amount of mucus and I had it all day yesterday... Maybe die off is a real thing... Still mucus but the stool was normal

Bobbie
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Re: Die off?

Postby Bobbie » Sat Jul 23, 2016 2:00 pm

Susant,
I know you are upset. We all are during c diff. I had 3 bouts of it -'1993 to 1997 (four years) 1999, and again in 2011. I had an FMT in 201l. It took weeks to work and during that time we went to the UK for our son's wedding. I was miserable. It was several months before I felt better.

I believe you are a new mother. Perhaps, you also have depression after childbirth.

If you have not already done so, please see a counselor. Perhaps medication can help get you through this rough time. You have referred to death several times.

Become friends with others on then site who have similar stories and PM or email them - or use the Chat Forum.

Try to think about something besides c diff and stop looking in the toilet. I empathize but you need to help yourself.The first times I had c diff - and when my son had it in 1979 and no one knew much about including doc's - there were no support sites.

You have been a member quite awhile - and the rules limit your posts at this point. We do not have the manpower to keep up with constant questions. You have posted three times already today.

Please, no more "blow by blow" replays.
You are young and, I believe otherwise healthy. You will recover - I promise.

Keeping busy helps. I worked and exercised during my first two bouts, and I Think it saved my sanity. My last bout was worse because I had retired but i still kept busy and exercised. Are you using a heating pad? It helped me a lot.

Again, please get professional help. We will always support you. Perhaps a second FMT would help. Hope,you are seeing a good, compassionate c diff expert.

Best wishes.

roy
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Re: Die off?

Postby roy » Sat Jul 23, 2016 3:46 pm

Susan
I have scanned through your old posts (30 months worth) and it seems you have tested dozens of times.
Each time the very second you get a bad day your testing immediately.
Most of them came back negative and nothing suggests c.diff as a life threatening disease.
Many times various Dr have refused to test but you just go and seek another Dr who does not know you and make sure you get tested.
C.diff can resolve by itself if it's mild and testing so often is wrong.
If you get copious D 3 times a day for 3 days without any improvement its time to test.
But your improving!!!!
We are not counsellors.
If you keep saying your going to harm yourself we might not feel able to reply to you.

amyc
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Re: Die off?

Postby amyc » Sat Jul 23, 2016 4:48 pm

Please seek treatment from a psychiatrist with experience treating patients with PTSD, ASAP.

georgina
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Re: Die off?

Postby georgina » Sat Jul 23, 2016 11:36 pm

Susan i know you are taking zoloft for a few years now , have you thought that maybe Zoloft can give you some GI symptoms . My psychiatrist said that Zoloft is notorius for giving patient D and frequent stool. And , Roy is right , stop testing week after week , have faith in your doctor , if you are having a few mucus attacks and normal BM , why worried?? The D is the only thing that you have to worry about?

amyc
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Joined: Thu Nov 10, 2011 8:15 am

Re: Die off?

Postby amyc » Sun Jul 24, 2016 12:05 am

Zoloft was not good for me. Depression meds are trial and error, and good doctors will work with their patients to find the right fit.


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