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

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

Postby beth22 » Tue Jan 19, 2021 2:24 am

You might ask about SIBO. After my FMT I had SIBO very badly (off the chart) and there were very few things that I could eat or I would get terrible symptoms. I had to treat with Xifaxan.

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

Postby Footie97 » Tue Jan 19, 2021 6:07 am

Thank you Beth, I will do some research on SIBO. I have spoken to the hospital PA but am still waiting to hear back from GI. I am so happy with a negative test but am clinically about the same as before fmt. Hoping for better days to come!

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

Postby Ali-Mar » Sat Jan 30, 2021 2:07 am

I had an FMT on July 14th 2020, over 6 months ago. For the first 3 months, I was having many issues. But after 3 months I started improving little by little every day. And now, six months later I still cannot tolerate many types of food and still haven't had one formed bowels. Most bowels are 5 or 6 on the Bristol chart. But the pain is improved a lot and I can eat more types of food now
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- UPDATE #2

Postby Footie97 » Sat Jan 30, 2021 6:59 am

Thanks Ali-mar for sharing your experience with FMT.
I had my FMT just over 4 weeks ago and overall I am better. I do have some really bad days but it seems that is “normal”. I still have 7s on the scale but most are around 5. I am still on a restricted diet (dairy free, gluten in limited amounts, no spicy foods, etc) My GI tells me to eat normally but certain items are not worth the pain they cause (for hours to days after).

I am hopeful for better days for everyone!

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

Postby Ali-Mar » Mon Feb 01, 2021 2:36 pm

I am 6 months post-FMT. My GI tells me to add a very little bit of a new food every few days. I still cannot have dairy, greasy food, no spicy food, and no sugar. I have a very little bit of Gluten every day by having one Crunchy Oats'n Honey Granola bar just so I get some sugar in me, otherwise, without sugar, my balance gets all messed up. My blood glucose level was 90 and I was not fasting before I start eating something with some surger

I have one bowl bristol 5 most of the days and some days is two or 3 bowels and Bristol 6th. Today is a bad day for me have abdominal pain , and two bowels (Bristol 6) so far, and it is only 10:30 AM here. It might be because I had 3 bars instead of 1 that I normally have every day. This is a new normal for me now...
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

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

Postby NanciT » Mon Feb 01, 2021 4:41 pm

Good the get the update and that you are slowly improving. I will never understand how some come out of this quickly, others don't. It took me a good full year. I recall feeling very grateful for my health, more than I ever have after the CDIFF ordeal.

Hang in there, you ARE getting there. Give yourself the time you need


NanciT

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

Postby Footie97 » Tue Feb 02, 2021 4:06 pm

Thanks for the support AliMar and Nanci

I am def improving overall. The last 24 has been a real s*** show but I know I will have struggles! I am in medicine and it is surprising how many docs I know don’t realize what some of us go through. Most of my friends say “ just stop the antibiotics and it will get better in a day or two”. I lecture for my state medical meeting nearly every year and I want to make a lecture for next year to present some of the dangers of oral antibiotics and the potential nightmare they can cause. I know it has changed my prescribing habits!
Good luck and stay safe everyone!
Clint

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

Postby beth22 » Wed Feb 03, 2021 2:26 am

Thanks for the update and good to hear you are doing okay. It took me a long time to add back foods.

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

Postby Footie97 » Tue Feb 23, 2021 1:05 pm

Hello All

I hope you are all doing well! I am 8 weeks out from FMT. To say it has been a bumpy road is a fair assessment. I am having much better days and weeks than in the last 8 months. Don't get me wrong I have had bad days also. I have been symptomatic enough to get tested at about 4 weeks after the procedure and was negative. I am still mostly dairy free and I think that has helped the most. I am getting back to trying foods I have not had in months and (except for dairy) I have been tolerating them all.
I am so thankful for the advice/encouragement that I have received from this page.

I think I am on the down hill side of this infection and am so happy to be getting back to normal!

I did have 2 rounds of COVID vaccines and with the 2nd shot I was really symptomatic for 4-5 days after to the point of almost getting tested. I took some time and my stomach has returned to it's new normal!

Thanks for all of your support!
Clint

beth22
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Re: Relasped again, Advice on FMT please- New Update

Postby beth22 » Tue Feb 23, 2021 10:09 pm

Thanks for posting the update. I'm so glad that you are doing better. I had some GI symptoms after my first COVID shot, but not the second. But, I know people who have had COVID with very bad GI symptoms, so this reaction from the shot is still better.

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

Postby Footie97 » Sat Jun 19, 2021 7:50 am

Hello All
I hope everyone is safe and feeling better.
I am really struggling right now. I am 6 months post FMT and am still symptomatic. I fail the 3x3 rule most of the time. I am seeing 2 GI docs and an ID doc regularly. I have tested negative for C diff twice since FMT. Last test was 3 months ago. I have tried every “diet”, dairy free, gluten free, low FODMAP etc with no changes.

We assume I have some sort of IBS (PI IBS and Crohn’s). I am reaching the end of my rope, my mental health is suffering. I can only hope for better days!

Take care everyone!
Clint

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

Postby Ali-Mar » Sat Jun 19, 2021 5:49 pm

Clint, sorry to hear you are struggling, hang in there, hope things will get better for you soon! The low FODMAP helps me a little. I noticed a drastic improvement after I stoped drinking tea
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

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

Postby skye » Sun Sep 26, 2021 9:20 am

Did you ever decide to do the Zinplava infusion?
I am now going on my fourth round of C Diff.
Any info you can share would be so helpfull.

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

Postby Ril » Sun Sep 26, 2021 10:59 am

Skye, the best way to ensure someone sees your question directed at them, especially in an old post, is to send them a PM. They will get a notification in their email inbox with a link and can pick up your note and respond to you.

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

Postby skye » Sun Sep 26, 2021 11:18 am

Thank you.I will do that.


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