Considering FMT - Met with Doctor today - interesting Info

If you have had or are considering an FMT please share your experiences here.
Roberta
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Considering FMT - Met with Doctor today - interesting Info

Postby Roberta » Tue Feb 23, 2016 8:50 pm

I have posted a few times over the past week since I've had my third relapse of C-Diff. I am now considered a classic candidate for the a FMT and met with one of the GI Specialists here in Chicago that is commonly known for performing FMT's. He was kind enough to spend close to an hour with me today to discuss C-Diff and I thought I would share some of our conversation as a FYI for others. The doctor explained several years ago when someone contracted C-Diff a typical does of Flagyl would do the trick and relapses were not common (that was me in 1987). Then as the years progressed C diff became more difficult and then Vanco became the drug of choice with a very high cure rate. As we know, this is now not the case and Vanco is showing a higher failure rate as well. I am currently taking Dicifid (since last week) as a last resort attempt at drug treatment. The GI doctor does not see any great difference between Vanco and Dificid and feels fairly confident when I finish my 10 day treatment I will quickly relapse. I am actually going to take another 10 days of Dificid but my hope is diminishing. The doctor explained drugs will most likely not cure me. I have proven that over the past few months. He said if they do I will be in a 20-30% category of people that are fully cured from medication. I arrived at my appt with a very detailed history of my first episode, treatment, 2nd episode and treatment, 3rd relapse etc. He said he hears this from many, many patients and not uncommon. What does make me a bit unique is I do not have the severe diarrhea that many experience. All positive C-diff tests with pain, M and general unwell feeling but luckily not the severe diarrhea. He said FMT's has a 90% cure rate and he has performed 137 FMT's and has only one patient that is resistant to the FMT for reasons currently unknown. I can use my own donor but he recommends two donors he uses that are tested every two weeks which I guess gives me some type of confidence. He mentioned the FMT will "rewind" my body back to pre c diff (October 2015), which is assuring.
Here is where I am a bit on the fence. I spoke with another GI doctor recently and he is against FMT. The reason for this is he said if the donor has some underlying condition (that they may not even be aware of or has shown in a screen test), I will inherit what the donor has. I asked the GI doctor about this today and he said "yes" it is likely but again confirmed his donors are regularly and thoroughly tested. But what if that donor turns out to have cancer, Parkinson's or who knows what in the future. Will my chances of this increase? These are the unknowns of FMT and he agreed. The doctor explained FMT's have been around for roughly 16 years or so, past 10 in the US and he has been doing them for the past 5 years. He did say there are current studies to artificially replicate the bacteria found in FMT so a donor would no longer be required and the bacteria needed to treat C Diff could be done by a pill etc. He joked and said he will probably be out of business of doing FMT's in 5 years as he is sure the artificial replacement will be out by then. He said he is "hoping" that is the case. I also mentioned I read that the recipient could also inherit certain emotional traits of the donor. He said that was true in tests with rats. Feces was taken from a rat showing an aggressive disposition. It was transplanted into a domicile rat. The domicile rat after the transplant displayed the same aggressive personality traits of the donor. Ok so that is rats, but what if there is a chance of this? Of course I asked him and he said the two donors he uses have very docile personalities, but then it makes me wonder then, why is he telling me this?
I did ask if I could maintain on Vanco (Dificid is too expensive to stay on long term) and he said yes. I could remain on a low dose of Vanco indefinitely will little harm to my system as Vanco is minimally absorbed in the bloodstream. I was wondering if I should do that for an extended period of time until I feel more confident about the FMT. My only fear would be the FDA stops the FMT's for any reason and then I will have no choice but to remain on the drugs.
It was upsetting to hear I most likely will never be cured of C diff with drugs. He said I will always be susceptible and a FMT will give me a better chance.

Thoughts anyone? This was a big post I realize but worthy sharing.

Thank you,

Lisa33
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Re: Considering FMT - Met with Doctor today - interesting In

Postby Lisa33 » Tue Feb 23, 2016 9:31 pm

Thanks for sharing your information. He gave you a lot of info for you to absorb for sure. This is completely your decision to make and between you and your doctor, but a couple of things that you said did stick out to me. First, that it is highly unlikely that you can be cured by meds. Although this might be true, I wouldn't just automatically assume that you are going to relapse after this round of Dificid. Dificid has worked for many posters on this site after relapsing several times on Flagyl and Vanco. Dificid does not kill any good gut bacteria, whereas Vanco does. I do think if all meds, including tapers of vanco and dificid failed with me, I would definitely have done the FMT. I know that there are potential risks and not a lot of documentation on any long-term effects since it's fairly new, but in my opinion, it is the only cure for c-diff that doesn't respond to meds. The other thing that stuck out with me is possibly taken vanco indefinitely. I would never consider this for me, as I can't imagine being on such a strong antibiotic forever is a good thing for your body. I know that the doctor seems to think it's ok, but vanco does have its own set of side effects and is an antibiotic that kills some good gut bacteria. I would also think that being on an antibiotic for that long would cause antibiotic resistant bacteria. This is all just my opinion.

I hope that the Dificid cures you and you don't have to worry about going for the FMT. But, it sounds like you are really educating yourself and asking all the right questions to your doctor so that you can make a well informed decision.

Lisa

Roberta
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Re: Considering FMT - Met with Doctor today - interesting In

Postby Roberta » Tue Feb 23, 2016 10:14 pm

Hi Lisa,

Thanks for sharing your comments. Yes, I am trying to educate myself as much as possible. As I also have my blood condition and take oral chemotherapy I have to heavily weigh all the odds. I agree the thoughts of taking an antibiotic for an extended period of time sounds crazy but he feels a very low dose 125 mg a day may maintain me. It is minimally absorbed in the bloodstream so I guess if I did decide to take it long term or at least to think more about a FMT it may not be too bad. Taking any meds is never ideal though.

I also had an opportunity to have a phone call with a man here in Chicago that had a FMT in early 2014. He was in much worse shape with severe diarrhea and was hospitalized a few times for dehydration, kidney issues etc. FMT's were not as easy to get then so he suffered for months. So the FMT was his lifeline and he is now completely cured.

I will continue to gather as much info as possible and maybe I will be the slim percentage where the Dificid will cure me.

Thanks!

Bobbie
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Re: Considering FMT - Met with Doctor today - interesting In

Postby Bobbie » Tue Feb 23, 2016 10:16 pm

Agree with Lisa. And keep in mind, a doctor gives a educated, experienced, expensive opinion - which might or might not be correct.

I was on Vanco on and off - moatly on - from 1993 - 1997. Few other options available then.

Assess the pluses and minuses and do what your "gut feeling" tells you to do - what "feels right.

Thx for sharing a lot of good info.

beth22
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Re: Considering FMT - Met with Doctor today - interesting In

Postby beth22 » Wed Feb 24, 2016 2:32 am

Roberta- When I first got c diff, I had your symptoms. Did not have the WD or much D at all, but did have a lot of M and then some bleeding. I was put on vanco right away and I think for me that was a mistake. The year before, I had similar symptoms, probably c diff and it went away on its own until I took Cipro. The more vanco I took, the worse I felt. The taper never worked for me. I chose FMT. Back in 2008 not many doctors were doing them, so I wound up in another state and had an NG transfer. It didn't work for me. I relapsed about 3 weeks later. Then I took vanco again and again for a few months. Had a colonoscopy transfer that did work, but because of the c diff and probably the vanco, I was left with terrible SIBO and IBS and LOTS of food intolerances. For those first two FMTs, I used my husband as a donor, obviously not a blood relation. FMT was still no guarantee of no relapse because when I took antibiotics 7 months later for another infection, back it came. This time with the classic symptoms and I wound up in ER. After another few rounds of vanco and a xifaxan chaser, I opted to do anther FMT, but this time used my daughter. Unfortunately, I was not able to hold in the transfer, but the doctor had also put in some into the duodenum. I got better, although every once in a while, I would still test positive, but only had D for a day or so. In 2014 I had to take several rounds of antibiotics. First, Levaquin along with vanco and I was sick the entire time I was on it. I did some FMT enemas and immediately felt better. Then a few months later, I took doxycycline and then a Z-pak and although both are low risk, I had them back to back, so I did a few more FMTs. After those enemas, I felt better than I had in a long time. I still have IBS, probably more from the vanco than the c diff, but am much better than I was before doing the FMTs.

If you are worried about problems down the line, maybe you should use someone in your family who is a blood relative that is healthy. My daughter is heavier than I am. I never gained weight after using her stool. She also has developed asthma over the last few years. I didn't get that either. We have very similar personalities anyway, so I can't speak for mood changes. I think you should see what happens with the meds that you are on. If the Dificid fails, and it might not, then you will have to decide whether or not to risk taking the vanco or doing the FMT. I know that if I were to relapse again, I would probably try Dificid first and if it did not work, I would not hesitate to do the FMT. But, that is me and I did not like the effects that vanco had on me. It affected my hearing and gave me IBS. Supposedly it only kills about 25% of good bacteria, but my stools had absolutely no normal smell to them whatsoever after just one day of that medication. If anything, there was a medicinal odor and after stopping, it would not come back either, not until I had the FMT. Even when I took probiotics, it did not help either smell or color, which was very light and yellow on vanco for the most part. Everyone is different and you will have to weigh the pros and cons, At least you have a doctor who explained everything to you and you can make an educated decision.

Dukiemom
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Re: Considering FMT - Met with Doctor today - interesting In

Postby Dukiemom » Wed Feb 24, 2016 7:05 am

Roberta,
I relapsed at the ten day point after flagyl, vanco, vanco taper and pulse and have been off dificid for 45 days. I still had much bloating, pain and discomfort for the first 3 weeks off. I don't want to jinx anything but the pain is gone, the cdiff is gone and every 3 days I add a new food. My Dr had said FMT was next. Like you I did all the research. And based on that I was going to stall. My plan upon relapse was to ask for a Dificid taper for all the reasons you mentioned. I think it's important to be prepared, but stress is a trigger too. Now that you have done all the hard work and had your appointments and have all the info, could you consider putting the decision aside and allowing yourself the chance to heal, without the stress of thinking of the FMT, and focus on being good to yourself, eating bland, taking your good probiotics and staying positive? After all, your Dr only sees those who relapse not those of us who succeed (hopefully) on Dificid. Sending good wishes your way.

Roberta
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Re: Considering FMT - Met with Doctor today - interesting In

Postby Roberta » Wed Feb 24, 2016 7:36 am

Everyone - thank you for posting with all of your great thoughts and comments. Let's see what happens on the Dificid.

For those who took Dificid (and realizing we are all unique) has anyone experienced being over tired? It instantly started the first evening I took it. The am pill not too bad, but the evening pill knocks me out. My husband commented last night that I am crashing out and sleeping through my alarm. I can barely keep me eyes open after 9 pm (take the pill at 7 pm). Not a big deal but was curious.

Also how long have some of you taken Dificid? I'm planning 2 X 10 day courses of 2 X 200 mg per day. Close to finishing my first 10 days. I would like to make this a successful attempt but heard of Dificid tapers. Would be interested to know.

Thank you again everyone. This forum is very informative and somewhat therapeutic considering what we are all going through.

I will post with my progress.

Thank you,

Dukiemom
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Re: Considering FMT - Met with Doctor today - interesting In

Postby Dukiemom » Wed Feb 24, 2016 9:56 am

I too experienced the fatigue. Missed many a Netflix movie's second half:) I was grateful that sleep came so easily though, given the alternative I experienced the previous 4 months. Since it is my understanding that our bodies do the most healing while we are asleep you can take comfort that your inflamed intestines are healing and the Dificid is vanquishing any active bacteria! I am hoping that a month from now you may be able to share with a relapsing poster how Dificid worked for you!

NanciT
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Re: Considering FMT - Met with Doctor today - interesting In

Postby NanciT » Wed Feb 24, 2016 10:58 am

Roberta,

Everyone has given you excellent information on their own personal experience, that is why this board is a blessing for all of us. Your Physician will give you their expert opinion, and then you look at all the facts and decided which is best, it is very individual especially because nearly all physicians have a different opinion and experience .
I am one that was on Dificid "long term". I was on a 3 month Pulse/Taper. At the time my GI did not do FMT's and 2 years ago it was difficult to find anyone who did in my area. I had a 4 month wait to see the GI who does them, he told me to continue on the DIficid and we would do the FMT if it returned. I had a total of 10 months of medication. I did not feel well on DIficid once I past the initial 10 days. I had abdominal pain, was exhausted and the nausea was terrible. But in the end, it worked.

I want to mention my experience Vanco. My 2nd GI told me the same thing," Vanco is not absorbed and has little or no side effects." I recall in 2013 when I first went on it the pharmacist saying the same thing. I had no issues with Vanco with first 10 days. Then went on a 3 month taper. At the time, I thought it was the CDIFF that kept taking me back to the ER so very ill. I later found out and all of this information is available, Vanco can cause severe Low Potassium in some people and that is what was occurring with me. It can be a life threatening situation and was in my case, I spent hours in the ER getting Potassium IV. My Dr. was blaming it on the CDIFF but now it is clear to me it was the Vanco in my case. I then developed Bladder pain and infections. Now it states Vanco can be a cause of this also and in my case it is, I can no longer take it. Information can change with any medication. As the FDA gets reports from patients, things change. I verified this information with the same pharmacist who told me the more patients use the drugs, the more information is collected and reported. I ended up with a great urologist and printed out all this information for him, he was shocked to read it and mentioned he had many patients who had taken Vanco, and had not put this together.

I am hoping the Dificid works for you, it has worked for many on this board. If not, the FMT's is available to you and most have done very well.
Feel better soon!
NanciT

beth22
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Re: Considering FMT - Met with Doctor today - interesting In

Postby beth22 » Thu Feb 25, 2016 1:31 am

I had extreme fatigue when I took Xifaxan. Not sure why and it did not go away until I stopped the medication. It happened when I first took vanco as well, but after a few days it subsided. Not with the Xifaxan. Maybe it has to do with lowering levels of potassium or other electrolytes as Nancy mentioned.


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