Re: Relasped again, Advice on FMT please- New Update

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Footie97
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Re: Relasped again, Advice on FMT please- New Update

Postby Footie97 » Sat Dec 12, 2020 12:40 pm

Hello all
I was diagnosed with C Diff at the end of June after several abdominal surgeries and IV antibiotics for treatment of Sepsis due to colon rupture. I have had 4 abdominal surgeries since Easter this year.

I have tested positive with PCR testing for the 5th time. I have taken Vanco and Flagyl for 10 days, then Vanco 500mg x 10 days, then Vanco 250 x 10 days, Dificid 200mg x 10 days then I did a long Vanco taper for 8 weeks. After the long taper I became symptomatic after about 10 days and finally tested after about 3 weeks after last dose.

I had previously discussed with my GI and ID Drs and we decided if I failed again after long taper that FMT was my only choice. My Dr had gotten approval for the FMT since I guess it is only being used for "emergencies" due to COVID.

I have been looking for advice/information on what to expect before and after FMT. Were you on oral antibiotics before transfer?, did you have to do a full colonoscopy prep? did you take immodium before/after? any dietary restrictions/recommendations? Any information you could share would be greatly appreciated!!

Stay safe and healthy!
Clint
Last edited by Footie97 on Tue Feb 23, 2021 1:43 pm, edited 3 times in total.

beth22
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Re: Relasped again, Advice on FMT please

Postby beth22 » Sun Dec 13, 2020 2:09 am

I had FMT via colonoscopy and yes, you need to take antibiotics for c diff before the FMT. You stop 24 - 48 hours before the procedure. Yes, you do have to do a full colonoscopy prep and I took Imodium before the procedure in morning and then again after the procedure. For the first few days, I just remember having a lot of gas. Afterwards, I did have food intolerances, but those I had every time I went off of vanco anyway, so I doubt they were from the FMT. I had IBS for a long time after, even with FMT and it took me a long time to gain back the weight that I had lost. FMT worked for me though and I do not regret doing it.

Footie97
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Re: Relasped again, Advice on FMT please

Postby Footie97 » Sun Dec 13, 2020 6:12 am

Beth22

Thank you for sharing your experience with FMT. It has been hard for me to maintain weight for me the last 6 months. I have been on a very restrictive diet since I first tested + for c diff hoping it was just PI IBS. I am so glad FMT worked for you!

I hope to have the transfer soon!

Clint

Ali-Mar
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Re: Relasped again, Advice on FMT please

Postby Ali-Mar » Sun Dec 13, 2020 12:40 pm

Footie97, I am so sorry to hear you had to go through so much...

I had to take Dificid twice per day for 7 days up to 32-48 hours before the procedure. And yes, I took one Imudiom one hour before the FMT and one right after FMT. you have to take the Imudiom with you to the hospital, they won't have one for you there.

The first 72 hours after FMT was very bad, I was in the bathroom most of the time. I even called the dr on call as I thought FMT didn't work... But the dr told me that it is normal to have D the first few days after FMT... I had FMT on July 14 ( 5 months ago), I have tested negative several times since, but I struggle with PI-IBS and cannot tolerate many types of food. That said, in the last 3 weeks my PI-IBS has improved quite a bit since I started talking Mega Sporebiotic two pills per day.. I tried Visbiom, Bio K+, and VSL 3 before that, but they didn't help as much as the Mega Sporebiotic.

Good luck with FMT and hope it will work for you. The FMT is over 95% effective, so the probability is very high
Last edited by Ali-Mar on Sat Apr 24, 2021 5:32 pm, edited 1 time in total.
Male 54, contracted C-Diff on Feb 5, 2020, diagnosed on March 2nd, Took Flagyl for 8 days, Vanco for 10 days, relapsed 5 weeks post-Vanco. finished Dificid Taper on June 20 relapsed two weeks later, had the FMT on July 14th, 2020

Footie97
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Re: Relasped again, Advice on FMT please

Postby Footie97 » Sun Dec 13, 2020 2:45 pm

Thanks Ali-mar for your insight.

I am sorry to hear that you had a first couple of days and with the PI IBS. I am hoping for the best and am glad to have the support on this site!

Stay safe and healthy, I will post after transfer (hopefully soon)

Clint

Footie97
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Re: Relasped again, Advice on FMT please

Postby Footie97 » Mon Jan 04, 2021 1:35 pm

Well I had FMT 5 days ago and my bathroom habits have been all over the map. I am still on a restive diet so nothing has changed on the intake side. I am still failing on the 3x3 rule. I was advised to do a test after 2 weeks if I am still symptomatic. I do feel somewhat improved overall. I know this is not a quick fix for C diff but I am hopeful for a better 2021!

Happy and healthy new year to all!!

Clint

beth22
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Re: Relasped again, Advice on FMT please- UPDATE

Postby beth22 » Tue Jan 05, 2021 2:05 am

You have to give it time to kick in. Assuming you had your FMT via colonoscopy, it also takes a while to recover from the prep and procedure itself.

georgina
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Re: Relasped again, Advice on FMT please- UPDATE

Postby georgina » Tue Jan 05, 2021 10:47 am

My first two weeks after the FMT were CRUEL! i had bad bad D and the only thing that helped me function , work etc was Imodium . I know it's bad for the gut and slows down the transit but nothing else helped, had no choice, but kept a low dose of two pills per day. It got better after i started Megasporebiotic and a FODMAP diet.

Footie97
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Re: Relasped again, Advice on FMT please- UPDATE

Postby Footie97 » Tue Jan 05, 2021 11:16 am

Thanks for your input Beth and Georgina!
I was advised to not take either Imodium or Probiotic (I understand the Imodium but not the probiotic). I have been on a BRAT type diet since I was diagnosed in June. I rarely venture far from that diet because I really pay for it if I do. I have been trying to remain positive after my procedure but my head always goes to the what if place. It has been a long 6 months and just want to feel better as we all do!
Thanks again for the input. Stay safe and healthy!

Clint

Footie97
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Re: Relasped again, Advice on FMT please- UPDATE #2

Postby Footie97 » Sat Jan 16, 2021 9:54 am

Hello all
I am 2.5 weeks post FMT. It has been a wild ride. I had to call my GI doc and he wants me to be tested again for active C diff infection. He did recommend that I cut out all dairy products. I have been dairy free for 4 days. I am still symptomatic but have had less bloating but still 3+x/day with loose to water D. This am I collected a sample that had a lot of mucus and small amount of blood.

I have had a positive outlook since the transfer but I am concerned. In all of the research i have done, most recommend to repeat FMT if failure occurs. I am not sure how I will proceed if I am still positive. It seems to me my choices are: repeat FMT($$) , long taper of Dificid ( insurance issue) stay on Vanco, try Zinplava or consider total Colectomy with Ileostomy. I will have results from the sample early next week then I will meet with my GI and ID docs to see where to go.

Hoping for the best

Stay Safe and Healthy!
clint

NanciT
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Re: Relasped again, Advice on FMT please- UPDATE #2

Postby NanciT » Sat Jan 16, 2021 10:23 am

Hello Clint

I am sorry the road has been so difficult, hoping you test negative. Good to follow up with GI. Post FMT can be difficult, not sure if you are having WD everyday, 3+ times a day. Things can be all over the place post FMT.

If by chance you were positive and D continued, I would push for a Dificid taper. If all other options have been taken...including FMT the GI could Push to approve this. In May my insurance approved the 2nd round due to my history.

I am hoping things improve and it just takes time. I will also add we did have a poster get Zimplava recently, you can check her posts. My ID reviewed it with me but after seeing my history of hypertension although its controlled, decided the risks may be too great. I would look into this option carefully.

Take care and I hope things improve soon

NanciT

Footie97
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Re: Relasped again, Advice on FMT please- UPDATE #2

Postby Footie97 » Sat Jan 16, 2021 10:45 am

Thank you NanciT

I will definitely push for Dificid taper, I did get approval for Dificid (months ago) for 10 days but it took a real effort to get them to do it. I have done research on Zinplava and will discuss with ID, he reports he has had success with it and long course of oral antibiotics. I do have Hypertension that is well controlled between meds and weight reduction ( from multiple surgeries and c diff). I will look for others experience with Zinplava. As we all do, I am getting desperate to just feel "normal".

Clint

beth22
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Re: Relasped again, Advice on FMT please- UPDATE #2

Postby beth22 » Sat Jan 16, 2021 10:45 pm

I did have to have more than one FMT, but I think doing a Dificid taper would be my next choice, especially now with Covid so rampant. You can always opt for FMT if that does not work for you.

Footie97
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Re: Relasped again, Advice on FMT please- UPDATE #2

Postby Footie97 » Sun Jan 17, 2021 10:23 am

Thank you Beth
I am going to push for long taper of Dificid (failed on Vanco taper) before I try FMT again. I am in bad shape today, considering going to ER. I know there is nothing they can do there. I am waiting on return call from my GI.
Hoping for a better tomorrow!
Clint

Footie97
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Re: Relasped again, Advice on FMT please- UPDATE #2

Postby Footie97 » Mon Jan 18, 2021 6:18 pm

Hello

I got my last test results and it is NEGATIVE!!!

I am still having issues, PI IBS I assume. Waiting on a call from GI to see what to do first.

I hope everyone is doing well and staying safe!
Clint


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