My First FMT Procedure

If you have had or are considering an FMT please share your experiences here.
MKW
Regular Contributor
Posts: 392
Joined: Mon Sep 26, 2016 9:49 am

My First FMT Procedure

Postby MKW » Sun Mar 05, 2017 8:31 pm

I wanted to share my experience with my first FMT procedure. It helped me to read others’ accounts of the procedure prior to having mine done so I would know what to expect. I had the procedure done three days ago and am feeling well as of today.
I was on Vancomycin until 48 hours before the procedure.

I have to say going through the bowel prep is the worst part. I used the product Suprep in split dosing. It was more expensive than the alternative, but involved drinking way less horrible tasting liquid. I was worried about doing the prep not knowing what kind of condition my colon is in after having C Diff 4 times. It went OK, no pain, or weird cramping. But after going through the effects of the second dosing, I felt general abdominal discomfort and had a lot of rumbling and activity going on with my colon. I was thinking… how am I even going to try to hold anything in after the procedure. So I felt a little doomed from the get go.

A lot of people who have posted on this board discuss that the procedure is more effective if the transplant is held in for longer. I asked my doctor about this when I consulted with her before the procedure. She said most people will pass liquid stool following the procedure, that this is normal, and that it does not mean the procedure will be ineffective. She said the colon is still coated with the good bacteria.

I showed up for the procedure and everything went well. I had this done at UVA Medical Center which is about an hour and a half from where I live. My donation came from Open Biome. The staff was awesome, all very professional, and experienced at this procedure. They put me out with fentanyl and propofol. I woke up in my recovery room, and felt “high” from the meds, but was fairly alert and physically coordinated upon waking. I was given an immodium to take. My doctor came in and spoke to me briefly and told me I have generalized inflammation and that she will be able to assess my condition more accurately once she reviews my biopsy results (she does biopsies during the FMT standardly). It didn’t surprise me my colon mucosa is not normal after bouts of C Diff, but at least she didn’t tell me she saw cancer or something horrible. About 15 minutes later I had intense abdominal cramping and had to use the toilet. So I did not succeed at “holding it in”. Following this however, I had no more BM’s until today – almost three days later, which was solid and normal.

Basically, I have felt absolutely fine since the procedure was done, other than being very tired. I have slept a lot on and off. I would say a person should take 2 days off from work following this procedure. I guess I was worried once the immodium wore off, I would immediately relapse or have some rejection reaction of crazy diarrhea. But nothing weird has happened. Today I felt fantastic. It almost scares me… because if this ends up and fails I will be so disappointed after feeling like this. I haven’t felt like this since before I had C Diff. I feel "well", almost euphoric.

So, tomorrow morning it will be back to work for me. And I have no idea of course what will happen now. I haven’t gotten my hopes up, since I have had no luck so far and keep recurring. But I feel like at least I was brave and tried the procedure. My last GI specialist was basically worthless. I had to seek out having this done on my own, had to go out of town, had to spend days on the phone to get the best insurance rate because it’s not offered at an in-network facility, etc.
Sadly so many of us have had to go through hell before finally ending up with doctors who have any experience at effectively treating this.
I at least feel like I am receiving quality care now, and that gives me a lot of hope and comfort. - Melanie

Tsc1964
Regular Contributor
Posts: 239
Joined: Tue Nov 29, 2016 1:18 am

Re: My First FMT Procedure

Postby Tsc1964 » Sun Mar 05, 2017 10:59 pm

It zounds like you had very positive experience. Sorry you had to go out of town an alot run around. I had to do the same thing an also 4 relapses. I should be getting scheduled this week. Kinda afraid of prep the meds have me pretty weak an we got travel hour on day of procedure. Wishing you the best an that this is your cure
Last edited by Tsc1964 on Thu Mar 09, 2017 11:45 pm, edited 1 time in total.

NanciT
Long Time Contributor
Posts: 3035
Joined: Thu Sep 18, 2014 12:01 pm

Re: My First FMT Procedure

Postby NanciT » Mon Mar 06, 2017 9:33 pm

Sounds like things went really well! Wishing you the very best, keep us updated!

NanciT

cnatra
Contributor
Posts: 86
Joined: Wed Jan 25, 2017 9:11 am

Re: My First FMT Procedure

Postby cnatra » Tue Mar 07, 2017 1:33 am

I hope this FMT works for you !!

georgina
Long Time Contributor
Posts: 2635
Joined: Sat Sep 12, 2015 10:07 am

Re: My First FMT Procedure

Postby georgina » Tue Mar 07, 2017 5:14 am

Congrats for FMT as it has the highest cure rate and really hoping that it will be your magic bullet. Even though you felt good after the FMT and you are still feeling good , the road to recovery is really bumpy and it might be possible to have off days from time to time , and it is really important not to panic , remember the three day rule and stick to it. Keep us updated!

Roxanne
Regular User
Posts: 56
Joined: Tue Jan 24, 2017 12:10 am

Re: My First FMT Procedure

Postby Roxanne » Wed Mar 08, 2017 8:37 pm

Glad everything is going well. I was lucky, besides feeling drugged for a couple of days, I felt great. Now I feel fantastic and didn't realize how sick I actually was. Our bodies get wiped out from the nutrients, takes time to recover. I know the IV fluids helped me a lot for the first couple of days.

amyc
Long Time Contributor
Posts: 2084
Joined: Thu Nov 10, 2011 8:15 am

Re: My First FMT Procedure

Postby amyc » Thu Mar 09, 2017 4:46 pm

MKW and Roxanne, I am so happy to hear that you are feeling so well after your FMT! I hope folks who are suffering can read your stories and feel hope that they will also become well.

Tsc1964
Regular Contributor
Posts: 239
Joined: Tue Nov 29, 2016 1:18 am

Re: My First FMT Procedure

Postby Tsc1964 » Thu Mar 09, 2017 6:16 pm

Yes it gives me hope which i desperately need. So weak an jus feel so bad been on vanco over month. Waiting for call to get mine scheduled an praying it works.

MKW
Regular Contributor
Posts: 392
Joined: Mon Sep 26, 2016 9:49 am

Re: My First FMT Procedure

Postby MKW » Thu Mar 09, 2017 11:23 pm

Tsc1964, it has been a week today since I had my procedure, and I'm still feeling good. I feel MUCH healthier than how I felt taking meds. So, hopefully you will get to experience this soon also :-) It really makes me wonder if we all end up with nutritional deficiencies as a result of having C Diff and not having the good gut bacteria. ...There are no guarantees my C Diff won't recur sooner or later, but I feel certain I made a good decision having the procedure done given my general state of health at this point.

Tsc1964
Regular Contributor
Posts: 239
Joined: Tue Nov 29, 2016 1:18 am

Re: My First FMT Procedure

Postby Tsc1964 » Thu Mar 09, 2017 11:41 pm

MKW
Thanks for sharing that. I have not felt good on the medicine at all. I know i was just tested for nutrional values an im deficeint in calcuim an vit d. I dont believe in absorbing alot well. Im praying i pull out of this right now seems impossible im so weak not to mention anxiety an depression. So happy hear these success stories.

GMR
Brand New Poster
Posts: 1
Joined: Sat Mar 11, 2017 8:01 am

Re: My First FMT Procedure

Postby GMR » Sat Mar 11, 2017 8:26 am

I am on my second round of medication for C-diff. Now I am taking Dificid
My question to all is if in fact this does not work, should I explore the FMT.
If so any recommendations as to where to go to do this and has anyone explored the most experienced doctor in this
type of transplant. I am very scared.

MKW
Regular Contributor
Posts: 392
Joined: Mon Sep 26, 2016 9:49 am

Re: My First FMT Procedure

Postby MKW » Sat Mar 11, 2017 10:40 am

GMR, that's good you are on Dificid for your second round. It targets the C Diff bacteria more specifically, and kills of less of the beneficial bacteria than other meds. The majority of people recover after taking a few rounds of medication. For me, I was not one of those people. I can tell you in retrospect where I went wrong in my treatment.... I didn't go ahead and locate a doctor that specialized in treating C Diff and in performing FMT's. I was seeing a GI specialist that I knew wasn't experienced, and just hoping for the best. I wish I had been more prepared. You should as a back up plan go ahead and find a doctor that performs FMT by colonoscopy. For my doctor, she does not consider FMT as an option until after 3 episodes with positive tests. As far as finding a doctor, there is a post on here that lists doctors who perform FMT, but for me it was outdated. My first GI specialist had told me he could refer me to someone that did the procedure by NG tube. I did not want it done that way, so I found a doctor on my own online. I'm not sure what is or isn't allowed for Rules of Posting on her about naming doctors, but you may want to do your own New Topic, and tell people where you live and ask if they know of any doctors. This is a very scary, unpredictable condition, and it's important to be dealing with a doctor that is experienced.

Benh
Contributor
Posts: 94
Joined: Tue Feb 07, 2017 5:36 pm

Re: My First FMT Procedure

Postby Benh » Sat Mar 11, 2017 10:58 am

I too faced the same question and like MKW suggests you should do some research here and online and find a FMT dr and set up an appointment. I did that as soon as I relapsed over two weeks ago and my apportionment is still 10 days away. You may have better luck getting in sooner though. I haven't met with him yet but I am placing a lot of faith that he will have the right plan if I relapse again. I am not getting the same confidence from the two other GI drs that I have seen thus far, not that they are not good drs, but they just haven't seen as much c diff as someone who sees primarily c diff - one of them actually said that dificid has not had as good success rate as vancomycin, which is contrary to the studies that I have read and the info hear. Good luck.


Return to “FMT Discussion”



Who is online

Users browsing this forum: No registered users and 17 guests