On and off for years, now scheduled for FMT

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Finn17
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On and off for years, now scheduled for FMT

Postby Finn17 » Thu Jul 19, 2018 10:20 am

Hello,

I had written about my three year time and multiple hospital stays with C Diff. I had a transplant in September, but never felt better. I kept getting diarrhea and excessive vomiting. I have often wondered if I could have IBS, colitis, something else as a result of the C Diff.

There are few GIs I can get to for different opinions as they are booked months. Now I am sick again, did Dificid, and am begging to try some sort of taper. The GI won’t hear of it, says I need another FMT, and that’s it. My doctor got me into a different GI as a favor, and he has so little experience with C Diff he too said I needed an FMT and was going to have taking Vancomycin right up til the procedure. The stool bank said it would have been a useless procedure.

So now I have an FMT for the second time in two weeks, and no one to help me any other way. Has anyone encountered this, or developed something like C Diff but wasn’t it, after having it? Thank you!

beth22
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Re: On and off for years, now scheduled for FMT

Postby beth22 » Thu Jul 19, 2018 5:36 pm

Many got PI-IBS and that gives similar symptoms. FMT supposedly can help for other GI issues too. There are various trials going on to research that. If you already tried Dificid, then I would go with the FMT. I had to have more than one and the second one helped me.

Finn17
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Re: On and off for years, now scheduled for FMT

Postby Finn17 » Thu Jul 19, 2018 10:07 pm

Thank you, Beth. Honestly I am scared to have a second stranger as a donor, and really wonder if I truly still have C Diff. I know you say that the FMT may help for other GI issues, so that at least is reassuring. I just wish I could have more confidence in the doctors - they either keep putting it off telling me to give it time while I am losing more and more weight, hair falling out, etc., want to do an FMT but incorrectly as I mentioned, or forge ahead and refuse to take time to answer questions. I think having been hospitalized multiple times shows this is not a made up issue.

Thank you again!

beth22
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Re: On and off for years, now scheduled for FMT

Postby beth22 » Fri Jul 20, 2018 1:17 am

Your doctors have probably run all kinds of tests. They ran everything for me. The only things that came up for me were SIBO and I also developed chronic pancreatitis. Pancreatic issues can make you vomit and lose a lot of weight. I assume your doctors have checked your pancreatic enzymes via blood tests. If not, talk to your GI about it. My pancreas looks normal on scans, but I still get elevated lipase and amylase and symptoms.

Finn17
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Re: On and off for years, now scheduled for FMT

Postby Finn17 » Sat Jul 21, 2018 12:37 pm

Oh yes, I have had multiple tests. Dangerously low potassium happens, but that’s from all the diarrhea. I had an EGD and the GI said it was fine. After I was admitted two months later, those GIs said the first didn’t go far enough and I had hundreds of tiny ulcers in my upper tract, which they could not explain.

I hate it when they look at only lab work and not the person. They have these positive C Diff tests and some, not all, act like “why aren’t you better?”

NanciT
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Re: On and off for years, now scheduled for FMT

Postby NanciT » Sat Jul 21, 2018 12:49 pm

FYI
Vancomycin can cause severe low potassium. It used to be considered a "Rare" side effect but more recently I have seen it listed. I reported it to the FDA when I was on a 3 month taper and kept landing in the ER with it requiring IV Potassium.

Just thought I would mention it, it's something to monitor if you are currently taking it and it has been noted your Potassium is low.

NanciT

Candles
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Re: On and off for years, now scheduled for FMT

Postby Candles » Sat Jul 21, 2018 9:53 pm

I have ulcerative colitis (had it for years), but just recently contracted C-diff. My GI suggested that along with the Vancomycin that I take Balsalazide Disodium Caps 750mg 3x a day. She said it should help me with the inflammation (of which, after the C-Diff, I have now throughout my colon). I have found it helpful. I would think that even if someone has not been diagnosed with ulcerative colitis - but has had c-diff for a while and can't get rid of it, that maybe the Balsalazide might be helpful to keep the inflammation down from the irritation from the C-diff. ? She also had me start taking a different probiotic supplement called Florastor. She has me taking that now 2x a day. Rather than having the usual various and multiple lactobacillus type properties, is has one that I've never heard of called, Saccharomyces boulardii CNCMI-745. I'm hoping it will keep the c-diff from coming back. A couple of the reviews online said that it has helped some people keep c-diff from coming back. The box says that you can use it while on antibiotics and it will be effective. I can't say if this is true because I started using it after I completed my round of antibiotics. I'm holding my breath praying that it doesn't come back.

Has your GI doctor suggested that you take any UC medication like Balsalazide? Given the amount of inflammation you must have by now from having c-diff for so long, I would hope he/she would have offered up something from the UC world to help with the inflammation. I recently found out that folks with arthritis take sulfasalazine (another UC medication), but the Balsalazide has been proven to be more tolerable than the sulfasalazine. I can't see why your GI doctor couldn't consider it if they haven't already. I would think that keeping inflammation down would help the colon heal while being treated and after having had c-diff.

I'm sorry you've been suffering with this for so long. Right now I'm paying that my c-diff doesn't come back. I'm a week off of the antibiotics and just started up with the Florastor and so I'm hoping any remaining diarrhea may be from the colitis at this point. But who the heck knows. Ugh.
54 Year old, Female with Ulcerative Colitis for past 25 years. First c-diff diagnosis early July 2018.

beth22
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Re: On and off for years, now scheduled for FMT

Postby beth22 » Sun Jul 22, 2018 1:13 am

Candles - Florastor is a yeast. That is why it is not killed by antibiotics and many posters have taken it. I do not tolerate it well. It gives me D and a rash and a LOT of gas and bloating. But, if you can take it, it is a good product.

Tracy430
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Re: On and off for years, now scheduled for FMT

Postby Tracy430 » Tue Aug 14, 2018 2:22 pm

I never realized Florastor can be taken with antibiotics. I thought there needed to be a window of a couple of hours between taking them.

Kuro
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Re: On and off for years, now scheduled for FMT

Postby Kuro » Tue Aug 14, 2018 10:47 pm

You normally do need to space probiotics as best you can between doses of antibiotics. However, since Florastor is a beneficial yeast and not a beneficial bacteria, the antibiotic does not kill it.

Like Beth, I did not seem to tolerate it well and only ever tried one pill. However, many have found it to be beneficial to them.


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