This forum is making me nervous

If you have had or are considering an FMT please share your experiences here.
DrMike
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This forum is making me nervous

Postby DrMike » Mon Jul 17, 2017 4:37 pm

So I'm scheduled for an FMT by endoscopy one week from today. The GI doc doing it is using an OpenBiome donation and he's one of the pioneers in the procedure.

I'm trying to be optimistic, really. I know I won't be 100% back to normal the next day, but literally every post in this forum seems to spell disaster. I'm reading about treatment failures, chronic IBS, etc.

But when I read the literature, I see 90% cure rates and relapse rates of less than 20% over 6mo follow-up with favorable side-effect profiles. I'm generally a strong man with an iron stomach, but now I'm kind of nervous.

Is it just that people with bad experiences post in here? What's going on?

OCmama
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Re: This forum is making me nervous

Postby OCmama » Mon Jul 17, 2017 5:01 pm

There are some hpyervirulent strains (beyond nap1) that are circulating through California, TX, Nevada and Maryland. the rates are going way up, relapses are up by 200% and people who are not usually at risk are falling ill; it has officially become a community acquired infection in California :-/

Davidtm
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Re: This forum is making me nervous

Postby Davidtm » Mon Jul 17, 2017 6:54 pm

Hi DrMike,
Not sure if you've read any of my posts on the fmt procedure but I wanted to help and hopefully boost your optimism. The fmt procedure itself is a very simple and quick procedure. The prep is said by many to be the worst part but honestly it wasn't that bad. I've done it twice and on the way home always shaking my head at myself for getting so worked up.
It's true that you will read a lot of negative experiences. People who get better right away and don't have issues don't really have a need to post like the others that struggle. A lot of posts and patients are the lucky rare exceptions to the majority that do well.
My first fmt was not administered timely and was accidentally frozen in the hours prior to infusion. I was 10 minutes from my fmt when the mistake was discovered and the offending tech thawed my donation in 5 minutes running hot water on the outside of the container. There was a miscommunication and the gi wasn't happy. I've actually never heard of anyone's sample getting so mishandled and the dr said things like this just don't happen. I had my own donor though and it wasn't as efficient and properly handled as an open biome sample is.
It will be over before you know it and it will work!

Sometimes people have had this for so long it can take even longer to recover. Post infectious ibs is common but good days increase and bad days decrease.
All the best!
David

beth22
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Re: This forum is making me nervous

Postby beth22 » Mon Jul 17, 2017 7:39 pm

Some of us have had c diff for a long time before getting FMT and had been on many weeks and months of antibiotics - usually vanco. I believe the vanco did more damage to me than the c difficile. The procedure, if by colonoscopy, will have the same side effects that colonoscopies usually have - gas, some cramping, etc. Most people do well and recover, although the doctor who did mine did say it takes 6months to one year on average to get back to "normal." Before FMT, when I was between relapses, I got all of these things that you are reading about on this forum too. I think it is more of an imbalance in the gut bacteria and FMT is your best bet for altering that. I did not use OpenBiome, but I know the major hospitals here in Los Angeles only do this - UCLA, Cedars, etc. Doctors will use individual donors at endoscopy centers, but the hospitals don't allow it. I guess it is too hard to test the donor, have the right facilities to mix the FMT, etc.

DrMike
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Re: This forum is making me nervous

Postby DrMike » Mon Jul 17, 2017 8:26 pm

https://www.ncbi.nlm.nih.gov/pubmed/26934528 <---interesting article on failure rates

http://www.medpagetoday.com/meetingcoverage/acg/54271 <---also interesting article, glad I'm going off immunosuppression for this.
https://www.ncbi.nlm.nih.gov/pubmed/27185076 <--primary source for article above

beth22
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Re: This forum is making me nervous

Postby beth22 » Mon Jul 17, 2017 9:15 pm

Those are interesting articles. I did not know that any studies had been done for this. I have had more than one FMT. First NG tube transfer that failed. Then colonoscopy FMT that was successful in clearing c diff, but my SIBO was even worse. I scored 150% on breath test - off the chart. I saw Dr. Mark Pimentel and he said my breath test was one of the highest he had ever seen - top 10 or so. I had to take Xifaxan. Unfortunately, later on I started the cycle all over again because I took Cipro.

But, from my own personal experience, I can tell you that having my daughter as a donor proved to be way better for me than my husband. Dr. Louie up in Canada used to do FMT years ago and noticed that when donors were blood relatives, patients usually had much less IBS afterwards. In my case that proved to be true.

I think a lot depends on what strain of c difficile you had and how long you have taken antibiotics. I had been on antibiotics for months, thus decimating my GI tract's good bacteria.

I would not worry about failure rate at this point. If it fails, you can always get a second one. Others have. Hopefully, the first one will do the trick!

georgina
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Re: This forum is making me nervous

Postby georgina » Tue Jul 18, 2017 12:48 am

DrMike
For some people it takes more then 1 FMT to get well but eventually they get there , hopefully not your case . Even though they are left with issues they can go on with their lives and finally accept that they will never be the same as they were before . I think that acceptance plays a big role in the healing process. Be optimistic , don't think about failure , think positive ,your FMT will be successful , you haven't taken months of antibiotics like the rest of us and you are young and otherwise healthy , you will recover faster.
If you want hope , you can check Skizamii 's posts ,he was ready to give up , he had the worst case of relapsing Cdiff but eventually he was cured by a FMT combo.

linnyg
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Re: This forum is making me nervous

Postby linnyg » Tue Jul 18, 2017 10:23 am

People who don't have complicated cases usually don't post. Some days, I need to take a break from online support groups, because it's c-diff overload- other days, I "take what I need and leave the rest". But as you know, knowledge is power.

I had 2 colonoscopy delivered FMT's. The first one lasted for 7 weeks. I did 3 weeks of Dificid after the first one failed, and had another FMT. Im approaching the 4 month mark and have repeatedly tested negative. I tested because I had some pretty awful bouts which caused me to swear on everything holy that it was back...it wasn't.

For me personally, I really think what they call "post infectious IBS" is actually food intolerance. I keep a food journal, and there is a definite pattern. Some foods bothered me long before I was diagnosed with c-diff, but I never put all the pieces together. The damage c diff caused to my gut magnifies those intolerances.

For now, my new normal means avoiding those trigger foods. Yeah, it sucks, but I would much rather go without certain foods than be curled up on my couch in a fetal position from all that pain. I was diagnosed last August, so Im approaching my "diff-erversary", and I feel like I am about 80-90% normal- almost like I never had it. Its'a a looooonnnngg journey, but so worth it. Good luck!

Lisa33
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Re: This forum is making me nervous

Postby Lisa33 » Tue Jul 18, 2017 11:28 am

I was going to say the same as linnyg. People who are easily cured usually do not post. They go on with their lives. So don't be discouraged by reading all of the negative outcomes. FMT does have the highest cure rate and works. Also, I bet if you polled a lot of the people who have had GI issues after the FMT would also say that they would rather post infectious IBS than c-diff. Be optimistic and get rid of this god awful c-diff for good!

Good luck to you.
Lisa

NanciT
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Re: This forum is making me nervous

Postby NanciT » Tue Jul 18, 2017 1:00 pm

In my opinion so much of what we read online is outdated. This forum is active with people who are experiencing this illness. When I was diagnosed in 2014 the numbers reported were exactly the same as the are now. Each GI I would see would give me the same numbers, they would often see CDIFF as antibiotic related diarrhea and it was clear to me there were few updates. I did my own research and found numbers appeared low in hospital cases. In fact I just read an article a few weeks ago that hospital cases are going down.
That is not what I am seeing in the hospital. Some may say we see the worst of the worst on forums, but I believe this is what many patients are experiencing.
I also was able to consult with a well known GI in my area right in the middle of my 3 month Dificid taper, he told me this was a very nasty illness and has become more complicated to treat.
In my two year experience( now closer to 3 years) I have spoken to countless nurses and doctors who really don't have any idea how difficult this can be to overcome and also the after effects so many deal with.
I also agree there are more virulent strains out there , there was a recent article posted on that also.
We have many on the site that drop in, do well either on medication or FMT and move on. I do think the fear of return can linger with anyone who has experienced this illness. Hopefully your FMT will be it and you will on your way like so many other's on this site!!
Wishing you the BEST with it!
NanciT

DrMike
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Re: This forum is making me nervous

Postby DrMike » Mon Jul 24, 2017 9:28 pm

Welp....

No going back! Just had it done!

Zapper
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Re: This forum is making me nervous

Postby Zapper » Tue Jul 25, 2017 1:00 pm

DrMike how are you doing? Hoping you have had a miraculous turn around!

DrMike
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Re: This forum is making me nervous

Postby DrMike » Tue Jul 25, 2017 3:54 pm

Zapper, gonna link you here:

viewtopic.php?f=7&p=122341#p122341


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