Post-FMT Concerns and toxin questions

If you have had or are considering an FMT please share your experiences here.
GtrGrl
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Post-FMT Concerns and toxin questions

Postby GtrGrl » Tue Jun 01, 2021 6:22 am

Following my FMT one week ago (not wholly successful as they couldn’t get the scope all the way round) I felt weak and unwell but my appetite had picked up and after three days I started to have some formed, painless BMs. Sticking religiously to the bland diet and prebiotic foods, I was feeling quite positive — but then yesterday I started having pain in my lower back, my stools were loose and the burning pain in my lower abdomen and back passage came back. This is the same type of inflammatory pain I’ve previously had during infections, rather than IBS-type, crampy pain. I’m dizzy, fatigued, have less of an appetite, rumbling noises in gut and am having palpitations and fluctuating between shivery and feeling boiling hot. I’d previously put palpitations down to anxiety but now I don’t think that’s the case as I haven’t had them for a few weeks and they’ve very suddenly come back: I’m concerned they’re a sign of infection and toxins. Does this sound likely? Has anyone had a similar experience? Has anything helped? I’ve read on other threads about Questran and wonder if I should ask my GP for it but am nervous to mess with my system any further. Slippery elm was another thought as it supposedly soothes the colon and draws out toxins but again, I’m scared to put anything new into my biome at this early stage.

My GI doc said they would retest 2 weeks after the procedure but I’m worried about spiralling before then and ending up back in hospital. I can’t just call him for an appointment as he is a consultant in a hospital.

Thank you for any support/insights.
Contracted C Diff from a round of Flucloxacillin, November 2020.

Metronidazole - Metronidazole - Dificid - Dificid - Vancomycin - Upper GI FMT - Vancomycin - Vancomycin - Lower GI FMT

beth22
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Re: Post-FMT Concerns and toxin questions

Postby beth22 » Wed Jun 02, 2021 1:17 am

It's not unusual to have stools like that after FMT. It happened to me as well a few days later, but I also found I could not tolerate foods that I had been eating while taking meds for c diff. If it continues, I would ask the doctor to retest sooner than 2 weeks. If it is not every day, then try to wait.

GtrGrl
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Posts: 204
Joined: Tue May 04, 2021 4:43 am

Re: Post-FMT Concerns and toxin questions

Postby GtrGrl » Wed Jun 02, 2021 3:50 pm

Thanks for your support as always, Beth. I will continue to monitor.
Contracted C Diff from a round of Flucloxacillin, November 2020.

Metronidazole - Metronidazole - Dificid - Dificid - Vancomycin - Upper GI FMT - Vancomycin - Vancomycin - Lower GI FMT

lvg
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Re: Post-FMT Concerns and toxin questions

Postby lvg » Fri Jun 04, 2021 9:11 am

Hopefully your fmt will still be successful! Mine was successful and I really felt sick the first few weeks following it. I posted on here five weeks post procedure feeling really sick also...I wasn’t feverish but was feeling pretty much everything else you described. Just sending some words of hope that it may still all work out! I’m a little over 14 weeks post procedure now and even got a negative stool test done recently, praise God! Hoping the best for you and really hoping you start feeling better soon!

GtrGrl
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Posts: 204
Joined: Tue May 04, 2021 4:43 am

Re: Post-FMT Concerns and toxin questions

Postby GtrGrl » Mon Jun 07, 2021 9:19 am

Thank you so much for the reassurance, Ivg. I wish there was a way to know at what point one can be considered out of the ‘danger zone’ following FMT, so I could count the weeks off. Hope you continue to go from strength to strength.

lvg
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Re: Post-FMT Concerns and toxin questions

Postby lvg » Mon Jun 07, 2021 11:24 am

Really wishing you all the best! My gastroenterologist said we could be confident at 8 weeks post procedure but that more studies are showing that if cure is sustained at 4 weeks there’s a really good chance it was a success. Sending well wishes !

GtrGrl
Regular Contributor
Posts: 204
Joined: Tue May 04, 2021 4:43 am

Re: Post-FMT Concerns and toxin questions

Postby GtrGrl » Tue Jun 29, 2021 3:59 am

I am panicking big time and need to share. 5 weeks since FMT and, after my initial wobble, I have been feeling so well and hopeful, with formed BMs and no pain. Now I have started needing to go more often and am having the other symptoms that accompanied the infections before: burning abdominal pain, palpitations, dry mouth, broken sleep, shaking, no appetite and feel boiling hot then shivering. I’m meant to be submitting a stool test some time before my follow-up appt and don’t know if I should do this ASAP or wait to see if it gets worse in case it’s only just starting up and won’t show any toxins yet. I can’t believe I thought I was finally going to be ok and now this.

Anyone who’s gone through multiple relapses will probably understand the fear that is sweeping over me right now :(

Edit: I now have loose stools as well.
Contracted C Diff from a round of Flucloxacillin, November 2020.

Metronidazole - Metronidazole - Dificid - Dificid - Vancomycin - Upper GI FMT - Vancomycin - Vancomycin - Lower GI FMT

beth22
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Re: Post-FMT Concerns and toxin questions

Postby beth22 » Wed Jun 30, 2021 7:33 pm

I would probably submit a stool sample. If it is negative, maybe it will give you peace of mind. If positive, then you need to see what your next step is.

GtrGrl
Regular Contributor
Posts: 204
Joined: Tue May 04, 2021 4:43 am

Re: Post-FMT Concerns and toxin questions

Postby GtrGrl » Sat Jul 03, 2021 3:37 am

Thank you, Beth, for responding and putting it rationally when I was spiralling. Submitted.

Edit: negative.


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