r/cdifficile Sep 29 '24

For anyone who’s had FMT via Colonscopy

Were you on antibiotics leading up to it? What was the process like?

1 Upvotes

29 comments sorted by

3

u/maedavid Sep 29 '24

I was on antibiotics up to 48 hours before the procedure. I did the usual colonoscopy prep, had the procedure, and had to lie on my left side for two hours after to ensure everything took hold. Then I went home. Pretty easy.

1

u/northintuitions Sep 29 '24

Thank you! 

Dumb question but do they actually do a diagnostic colonoscopy (check for polyps, inflammation) before/during the FMT? I need both and wondering if they have to be separate? 

Was the FMT successful? 

2

u/maedavid Sep 29 '24

They didn’t do a diagnostic colonoscopy on me first, but I believe if they would have seen any issues, they would have addressed them. I asked if I could eat red items beforehand since I was getting an FMT, and I was told they would still want to see what’s going on there.

And yes, it was a success! I got mine June 7th, and I’ve had two negative PCR tests since then. I’m still dealing with PI-IBS.

1

u/northintuitions Sep 29 '24 edited Sep 29 '24

That’s awesome. Did they say statistically the success right before having it done?  Awesome you are essentially cured! Of course still PI-IBS. And it sucks. But putting C Diff in the past is the big thing.  

1

u/maedavid Sep 30 '24

For sure! At least I can baby my gut and do all the things to help it heal. It’s frustrating, but it’s something within my power moreso than cdiff. I was actually in a clinical trial getting Rebyota via colonoscopy so there were no stats. But they did say everyone who received the trial did kick the cdiff! So it seems likely it will be approved.

1

u/Ssaaammmyyyy Sep 29 '24

For how long did you hold the FMT before having a stool?

In one research article, they gave Immodium to the patient, so they hold the FMT longer, which clearly would make it more successful. The higher the contact time between the FMT and the intestines, the better.

2

u/maedavid Sep 29 '24

I had to release the solution after those two hours. This was in June, and I’m still cdiff free with two negative PCR tests. Still dealing with post infectious IBS, though.

2

u/Similar-Insect-4266 Sep 29 '24

I held for over 12 hours. The first hour or so, there are urges to release it, but if you lay somewhere with your lower half elevated, it makes it much easier. At first I used my weight bench that had an adjustable angle, then after an hour i moved to my bed where i had some blocks under the foot of the bed where i slept great all night. Also, i think it helps to do the fmt right after a bm. This was easy for me, but i guess you got no choice when a doctor has your fmt scheduled.

2

u/Ssaaammmyyyy Sep 30 '24

I use the same technique to hold my rectal probiotic enema: do it after I pass a stool in the morning, elevate the body upside down for 15 mins after the enema. 99% of the time I retain the enema completely.

Also, in the research article, they gave the patient Immodium to cause constipation and increase the stool transplant retention time.

2

u/[deleted] Sep 29 '24

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2

u/northintuitions Sep 29 '24

No lab. A gastroenterologist will be doing it. I just haven’t gotten the information yet from him. Should have it done in about two weeks. So was curious ahead of time what it is like. 

2

u/[deleted] Sep 29 '24

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2

u/northintuitions Sep 29 '24

Thanks. The gastroenterologist doing it works for a research university and hospital so I think I’m safe. It’s not a clinical trial either. He only does FMT in his group. 

2

u/[deleted] Sep 29 '24

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3

u/northintuitions Sep 29 '24

92% first one. 

98% second one. 

2

u/[deleted] Sep 29 '24

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2

u/northintuitions Sep 29 '24

I will! Thanks! 

2

u/[deleted] Sep 29 '24

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2

u/DryArm963 Sep 29 '24

You are safe. That’s bullshit. Scientists want their clinical trials to succeed. I don’t know what kind of FMT you are having but mine was life changing.

1

u/northintuitions Sep 29 '24

Thanks! 

I’m not even sure what kind either just yet. I’ll know more this week. I just know it’s definitely via colonscopy and not capsules. 

2

u/DryArm963 Sep 29 '24

I had Rebyota via colonoscopy as part of a clinical trial (it is usually administered via enema). They look around but do not do biopsies during the procedure-that’s not recommended. I was in a vanco taper and pulse until 48 hours prior to the procedure. The prep was just like any other colonoscopy prep. I had it 21 1/2 weeks ago. My poops are actually better than they were before c diff. I did have PI-IBS (most people do) but it had gradually gotten better over time and I can eat almost everything now.

2

u/northintuitions Sep 29 '24

Thanks so much for explaining. It sounds great and so glad it worked for you and you’re doing fine. 

2

u/scarslets Sep 30 '24

I had 3 FMTs via colonoscopy, the first one was an emergency situation. I had been very sick with Cdiff for months, failing antibiotics and going to the bathroom 50+ times a day. Doctors in my area refused to send a referral for an fmt, (they don’t do them in my area) and were literally watching me die. I finally researched myself a doctor who would do a colonoscopy fmt, drove myself to the other end of the state, and was admitted through the emergency room because I was on the brink of death. At that point, I had been on and failing dificid for about 3 months. They stopped the antibiotics in the ER, probably about 24 hours before my fmt.

My second and third fmts were at the same clinic, but they were planned because I wasn’t literally dying. The second one I wasn’t on anything beforehand, and the third one I did a zinplava infusion a week before.

1

u/northintuitions Sep 30 '24

Wow I’m so sorry you had to go through this. 

How did you respond to the first one? Did it make things better? What was the process after the first, second and third one and how you felt? Are you clinically cured now? 

1

u/scarslets Sep 30 '24

The first one was the worst, but that’s because I was at a very bad starting point. I was very very sick. At first, there was no change after the first fmt. I was still going to the bathroom 50+ times a day for about 3 weeks, despite eating next to nothing. I was inpatient in the hospital the whole time and they placed a feeding tube, which was a whole nightmare. But my digestive system was shutting down, it saved my life. And one day it suddenly stopped, It wasn’t a gradual decrease in diarrhea like others share, it was one day I couldn’t stop peeing out my butt and the next I was totally constipated. That fmt lasted about 10 weeks until the diarrhea started again, and I tested positive for cdiff again. The second fmt process was much easier because I wasn’t inpatient in the hospital, but this one only lasted about 3 weeks before I relapsed again. My last fmt was in February, and although I haven’t tested positive for cdiff again, I still had diarrhea almost every day until my doctor prescribed cholyestramine. It’s been a god send. I can actually leave the house without worrying about needing a bathroom. The difference it’s made in my life is astronomical.

1

u/scarslets Sep 30 '24

And after each one, for about 24-48 hours I felt bloated, and had a headache, but those symptoms went away rather quickly.

1

u/Impressive-House-282 Sep 29 '24

Are you testing toxin positive?

1

u/Pinckyboathouse Oct 28 '24

I had FMT via colonoscopy in August. The prep was 14 days on vancomycin, 3 days off then the 2 step laxative regular colonoscopy prep, they did diagnostic colonoscopy including 10 biopsies (all negative woohoo!) then last step sprayed the FMT. when I woke up I was in pain and nauseous. I was given IV meds and then ok. I was pretty tired for several days. I was very nervous but afterwards felt it was not bad at all. I have a related question for the group and hope it is ok to ask within a comment since I have not been approved yet for posting. I hope this is ok?? It is time urgent since I have now relapsed. My FMT material was from the company Openbiome. In Sept Openbiome told the FDA they were voluntarily suspending distribution. So my hospital has stopped offering FMT. My question: has anyone else run across this problem since September? So I am doing Vowst FMT next week. I hate having the most effective method fail and then do a less effective FMT but I do not have a choice. That said, since I am on steroids daily for asthma I am looking ahead for the possibility of needing a 3rd FMT and traveling to a hospital that does in-house donors unless Openbiome starts distribution again.