Need Advice 6 YEARS post FMT

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beth22
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Re: Need Advice 6 YEARS post FMT

Postby beth22 » Mon Oct 07, 2019 9:05 pm

So sorry to hear that. I was told that with my c diff history if I relapse I would be eligible for FMT. Guidelines are different now than years ago. If your GI says no, get a second opinion.

georgina
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Re: Need Advice 6 YEARS post FMT

Postby georgina » Tue Oct 08, 2019 12:36 am

Sorry to hear you are dealing with Cdiff again , but after a combo of Cipro and Flagyl is to be expected. In case the doctor doesn't wanna do the FMT you should look into Dificid. It's the best drug for Cdiff , might be your magic bullet.

MSLOANE
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Re: Need Advice 6 YEARS post FMT

Postby MSLOANE » Fri Oct 25, 2019 4:25 pm

update...

I finished a 10 day course of vanco at 125mg 4x/day. I felt a lot better while on the vancomycin and my stools "recovered." I was able to get the oral version made for me and it only cost me $70. I felt like a mostly normal human being from the 3rd day onward and used that time to eat like a maniac and get my weight back up.

After the vanco stopped, I was pretty sure I was relapsing within two days, as there was a little blood and mucus, very minimal amounts, but also my roids were flaring too, could have been that. I never had any watery D and the stool was formed but soft. I didn't bother to test.

My plan was always to try the home transplants again after vanco as stage 2 treatment - so on the second day after I stopped antibiotics, I started doing the home enemas, and I did 7 in total. I did not do the bowel lavage. Sometimes the stool was frozen and sometimes not. I made sure to hold the transplants indefinitely, or at least 20 minutes, though some it was impossible to do so, so I would re-squirt leftovers in and try again. Overall, I would say I did about 3 I was able to retain completely and the other 4 were various times, with the shortest being 5 minutes, but average probably 20 minutes. I really tried to get it as far up the colon as i could, but the fleet bottles can only squirt so far and I can only invert my body so far without having a "release." *wink wink* And yes, I learned that the hard way. :/

My Dr said he will do a colonoscopy FMT if I relapse, and offered it to me initially, but I wanted to test antibiotics + home enemas first to avoid another potentially expensive procedure. At least I know I can get the FMT done, but I need to know that I am empowered enough to fix this at home as I think that level of empowerment will help ease my anxiety. On the flipside, the exact opposite could happen if I fail yet again. It is a risk that I took and that I hope I don't regret.

Let's be real here for a minute, I feel like crap. My stools are usually 50% formed and soft, and 50% semi-formed mush but not D that's hard to clean (some people call this normal but not I), you know what I am talking about... And of course with that last tail of 50% soft serve, you have to try and get the remnants out a few hours later as it doesnt like to come out all at once...annoying. Usually some form of tenesmus as well. And then some days, I have an encore when I get home from work that is similar or maybe, just maybe, a bit more formed and i am good for the night. As of yet, I have not had any WD or B since initiating the home protocol, and I refuse to watch my diet so I am eating everything within reason, "Normal food." I will not waste away to a skeleton again like last time, nor should anyone else. I had a lot of nausea at the beginning of the home transplant regiment and felt pretty bad at times. Overall gas production is low as well except for the day of my first transplant where it felt like someone was blowing up my intestines like a balloon.

Overall, I think my symptoms at this point is consistent mild left sided cramping, bloated feeling in lower left side, flaring hemorrhoids, and questionable stools that resemble IBS stools but could also be Cdiff precursor stools. I'm super paranoid and my anxiety is insane at this point.

Now for some questions to the sages of this board.

1) To me it sounds like this could be Post-infectious IBS - I spoke to my mom who said I complained for these similar symptoms for 6 months after my last FMT - cant remember as I blocked so much of that period of my life out. She sent me the panicked emails i sent her and they are almost verbatim to today. Yikes.

2) I am smoking a lot of "refer". I read CBD can protect intestines from cdiff toxin inflammation and it helps with the cramping I feel. I am using a 50/50 CBD/THC cartridge. Also worried that THC could slow bowel and act like Imodium and hence create a worse situation, but so far I dont think that is happening. Thoughts?

3) Is it possible that all these enemas of donor stool have severely upset my intestinal apple cart? Some days i would do them and feel ok, other days i would do them and feel horrible.

At this point i am in a watch and wait pattern. I may start doing transplants every three days now and my pops is freezing his contributions to the cause just in case.

beth22
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Re: Need Advice 6 YEARS post FMT

Postby beth22 » Sat Oct 26, 2019 1:54 am

I did the same thing as you are doing back in 2014 after I had to take Levaquin. I started with home enemas and they worked pretty well. I did not relapse. However, I did not eat everything like you. My stools went from D to solid quite quickly with occasional looser stools, but not D. I hope you had your donor test stool at least. If not, it is possible that you got some other bacteria, which has happened before. Otherwise, IBS is pretty common. I had a lot of gas after the enemas for a while too.

MSLOANE
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Re: Need Advice 6 YEARS post FMT

Postby MSLOANE » Mon Oct 28, 2019 1:05 pm

update::

Well, the pain in my lower left side was not just gas but a relapse. I guess the home enemas were only holding off the disease. I feel extremely defeated and unhappy. This relapse is worse than any prior infection or relapse. Very painful and lots of mucus and blood. Hospital confirmed diagnosis of toxin + dna.

I feel like an idiot, i thought for sure the home enemas would work and it honestly scares the S out of me because if those don't work, what are the odds the full scale colonsocopy FMT will?

I spoke to my dr who insists on having my donor tested, so I am kicking that off, and once that is done he will schedule the procedure but I think i will be on vanco for some time prior to this all working out, probably at least 3 weeks. I am really disheartened and afraid. I had an fmt that was successful in the past, but with these failed enemas, boy I really don't know what the future holds for me.

PArt of me was ready to take some anti nausea pills and swallow a turd hole, obviously i never did it but I really hope this fmt cures me as I cant go on like this.

I am also worred as my son is due to be born end of november... and that means with a fresh transplant i will be staying in hospital probably relapse again. What an awful illness. I know people with cancers that do better than this. this is crazy.

roy
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Re: Need Advice 6 YEARS post FMT

Postby roy » Mon Oct 28, 2019 1:30 pm

If the donor for the home enemas was not tested you might be infecting yourself!
Many people carry c.diff and dont get symptoms and dont need treating.
Use them as donors and the recipients poor condition colon allows the newly introduced c.diff to flourish.

MSLOANE
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Re: Need Advice 6 YEARS post FMT

Postby MSLOANE » Mon Oct 28, 2019 1:49 pm

i highly doubt my dad has it, he has not taken antibiotics his entire life and is of excellent health. It is possible that it was somewhere in there dormant or colonized, but who knows. He will get tested anyways for this colonoscopy route. But even if a donor has cdiff bacteria or spores, wouldnt it get outcompeted by all the extra good bacteria?

I tried my wife, and my dad, and both results in same outcome. THough onloy on my dad did i do the vanco prior to enema. With my wife i just fought fire with fire. I actually did improve in both cases in the beginning, and with my dads it was holding off the disease and only until i stopped doing the enemas did the disease resurface.

Not sure what this all means tbh - probably and hopefully that the disease is higher up in colon that enema can go. Who knows.

roy
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Re: Need Advice 6 YEARS post FMT

Postby roy » Mon Oct 28, 2019 2:08 pm

Using an untested donor is dangerous, it's like Russian roulett!
Bacteria that's harmless to your dad can cause you harm!
A normal healthy person can carry c.diff and lots of other POTENTIALY nasty bugs, not having previous antibiotic use has no connection with his current flora and theres strict guidlines about testing donors.
Going forward you MUST run any treatments past your Dr.
Dont put yourself at risk.

MSLOANE
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Re: Need Advice 6 YEARS post FMT

Postby MSLOANE » Mon Oct 28, 2019 3:29 pm

agree with you. while at the hospital they ran my stool for cdiff plus some other 26 pathogenic bacteria test, all were neg but cdiff. Even wile having M and B my white count was not even elevated, which is crazy. On day 1 of vanco now, and things are improving already, so at least i know it susceptible to it.

Bobbie
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Re: Need Advice 6 YEARS post FMT

Postby Bobbie » Mon Oct 28, 2019 3:55 pm

Agree about testing possible donors. Why take a chance?

georgina
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Re: Need Advice 6 YEARS post FMT

Postby georgina » Tue Oct 29, 2019 5:56 am

You can be severely sick with Cdiff and have a normal white count .

MSLOANE
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Re: Need Advice 6 YEARS post FMT

Postby MSLOANE » Tue Oct 29, 2019 5:37 pm

Tell me about it, Georgina. Vanco has kicked in and stools are improving already, I think the blood is gone, but still have some mucus.

Had my dad get tested today for the FMT, those results will come in soon, and if we are good to go, I think I will be able to get the scope as soon as my vanco prescription runs out - 2 weeks.

Have a new fear. My wife is 8 months pregnant and I am set to be a first time dad in a month... how risky is going to the hospital to deliver the baby in recovery from an FMT? Baby will be coming within two weeks of the FMT if all goes according to plan. I am going to be wearing a bio hazard suit of nitrile gloves and a tight face mask the entire time I am there, as well as multi layers of long sleeves and long johns. As well as burning or trashing any and all items taken into the hospital - not kidding.

I am also extremely concerned for my wife, as this doc is already talking about preventative antibiotics in case some vaginal swab comes back pos for strep in birth canal. F-that. i know she has been exposed to my spores, without question. What is with these doctors and their precious antibiotics? Do they not understand the damage that they do? How did they end up "preventative" - it is F'ing insane. At this point I feel I am fighting on many fronts, against many idiots and it is wearing me thinner than 1-ply toilet paper.

I wont let her take anything unless she is actually sick or the kid, if the kid is actually sick. If i have to be the asshole in the room, I have no problem being that. I already am anyways.

roy
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Re: Need Advice 6 YEARS post FMT

Postby roy » Tue Oct 29, 2019 5:58 pm

Google about c.diff in babies!
75% of them have it and it does not make them sick!
It's normal for a baby to carry c.diff.
In fact because of that maternity wards are the most c.diff contaminated places in a hospital.
Your much more at risk of getting c.diff from the baby than the other way around.

Just a thought but its fact that vanco takes at least 3 days before it kills c.diff and the symptoms improve.
It has to kill the active infection to stop the toxin production, then the toxin has to be eliminated (pooped out).
After that the colon has to heal and start to absorb liquid so stools harden.
Not something that happens on the first day of taking meds so you were probably already recovering.

MSLOANE
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Re: Need Advice 6 YEARS post FMT

Postby MSLOANE » Tue Oct 29, 2019 7:05 pm

I have read all the literature I can find on asymptomatic cdiff carriage in infants - and noting that by year 1 carriage rates are that of the normal population ~3% - even though it starts at 60%, which is crazy when you think about it. I don't know if that is endemic or if that is caused by the hospital environment. I am well aware so I will be extremely careful when changing diapers, etc - trust me on that. I will do everything in my power to avoid this nightmare again at all costs (assuming the fmt cures me).

With all due respect, Roy, there is absolutely no way I was recovering... had I let that continue I would have been in severe shape. I have never, ever seen that amount of mucus and blood in the bowl - not even the first time I had this years ago - it was bad, but not this bad. This was 100% certain a relapse. Vanco kicks in fast in my system. I am on day 2 now and I am still in pain and my stools are not great, but they are much better than they were (WD). And I know I am still getting rid of toxin due to all the mucus. Thankfully our colons heal fast. Usually by day 5 I am what i would consider myself "85%" and after a week, "95%", and after 2 weeks, back to "normal", all for it to fall apart again. lol

What a nightmare.

Has anyone successfully sued a hospital for this and for improper use of antibiotics?

beth22
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Re: Need Advice 6 YEARS post FMT

Postby beth22 » Wed Oct 30, 2019 1:23 am

The enemas you did may not have gone up far enough. I never did them without testing my donor. Your dad could be harboring c diff and not have symptoms, but you will find that out soon enough. If he clears, then doing the FMT would be the best bet. It is really the only thing that ever helped me. I also saw improvement after one day of vanco, although it did take more days for the mucus to clear. However, bms definitely did slow down even after one day. By day 4 or 5 things were much better.


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