Doctor Says FMT.

If you have had or are considering an FMT please share your experiences here.
christos
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Doctor Says FMT.

Postby christos » Mon Jul 24, 2017 3:57 am

I met with the doctor who heads up all the FMT studies in my city. (would prefer to omit his name as I haven't asked his permission to post).
He is currently running a trial for frozen versus fresh FMT efficacy, and another trial for Rebiotix. His life's work is pretty much CDIFF.

We had a very long discussion about my symptoms, and my positive PCR test. Here is some take-aways from that.

1. People in my age bracket are less likely, if at all, to bleed during CDIFF. Bleeding is indicative of other problems.
2. Some hospitals have already changed from PCR testing to back-to-back toxin testing.
3. The only useful test is a negative test, the positive test is almost useless.
4. Recurrent CDIFF patients are being over diagnosed and over treated leading to bigger problems like me. Doctors/Patients need to work closer with a GI. Wants to see more use of anti-inflammatories to try induce remission first over immediate re-treatment.
5. Lopermide is safe for one time uses for mild condition. Pepto is useless.
6. PI-IBS is only a diagnosis if IBD's are ruled out.
7. Bristol 5 and 6 is some peoples "normal", and that even some people have to live with a Bristol 7 after CDIFF as their normal.

Suspects "mild cdiff", and that I have either PI-IBS or "Ulcerative Proctitis (UP)". This is based on the lack of fever, inability of ABx to improve my stool and the lack of watery D.

Has ordered a CDIFF PCR with full toxin test.

If the toxin test comes back positive he will administer FMT via enema, without antibiotic treatment. If it comes back positive PCR, negative toxin, he thinks it's PI-IBS and/or UP and will probably not give me the FMT.

I'm glad he's not so focused on CDIFF that he's jumping to conclusions, and wants to rule out UC/UP. He has asked me to fly back home to Australia and get a colonoscopy done, I don't think FMT is an option back in Australia, so I kind of have to get the FMT done here if I need to get it done.

I'm a bit nervous, because he wants to administer the enema in "early august", but I'm flying on the 15th of august. From what I understand on FMT, is that peak diversity is hit within 7 days, but that there is a small chance it might make me worse....?

I dunno... I don't want UP, I don't want CDIFF, I don't want PI-IBS and I don't want to fly. I've stocked up on Pepto, Nausea Meds and Melatonin so I can hopefully sleep through the 16 hour flight. Lopermide interacts with my nausea meds.

Everytime I get the courage to tell myself "I just have PI-IBS" and I actually start feeling confident about flying, I get a cramping episode that sends me to the toilet then I freak out. I'm eating less as I'm slowly getting scared of eating.

Bah whatever. hurry up early august! :D

NanciT
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Re: Doctor Says FMT.

Postby NanciT » Tue Jul 25, 2017 10:53 pm

I understand the fear of travel, its so difficult when your episodes are uncertain. It sounds like you have a GI you are confident with, that is really important. As far as his opinions, I find so many GI's differ in all of this. In my case, I have actually seen 4 since this started with me in 2014. They all have different thoughts about what works.
I think that is what can often make this hard to treat for those of us who relapsed.
The plan you have sounds good, I would be uncertain of the travel. I think you will need to see how the procedure goes and how you do.

Wishing you the Best with this

NanciT

Bobbie
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Re: Doctor Says FMT.

Postby Bobbie » Wed Jul 26, 2017 1:30 am

You might contact Dr. Thomas Borody at the CDD in Sydney, AU. He is a c diff expert.

christos
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Re: Doctor Says FMT.

Postby christos » Thu Aug 03, 2017 1:59 pm

So, the doctor just called me to tell me that I'm still PCR positive and toxin positive, and that I have three options.

1. Don't treat and keep waiting it out, I will most likely not get worse but it may be a slow, long and hard road to get better.
2. Go back on vancomycin taper (I've already done vanco once, then done a vanco taper)
3. Participate in FMT.

I believe I've read that FMT should really be considered after the first taper for recurrent patients.

I'm down to one stool a day at the moment, but every stool is covered in mucus. My appetite is gone. And I get bi-lateral scraping pains. I don't eat a lot and find I have to force myself, and I'm starting to lose a bit of weight. Doctor says that if I do or don't have Ulcerative Colitis or IBS, that clearing the CDIFF will help that condition.

This decision is near impossible, the only comforting thing is that he has told me that based on the hundreds of patients he's worked with, that no one gets a WORSE cdiff infection if they are to relapse after FMT, I should expect to just return to the same as I am right now if I was to relapse. He only works with recurrent patients like myself.

I have 24 hours to decide, I'm freaking out. The treatment if I want it will be via enema on the 8th, and I will be getting on a plane on the 15th, this gives me 7 days of leeway for recovery. He says that I really shouldn't be worried about the flight, despite it being long haul, because a tab of lopermide will keep it in check long enough until I land and then I would be able to go to hospital if I was to relapse on the plane, albeit he doesn't really think that's going to happen.

Cure rates of FMT are quoted as >80% >90% - I'm edging towards getting the FMT done I just don't know why I didn't say yes to it immediately over the phone. I feel guilty because I'm relatively mild compared to other people but I'm still in discomfort it's been almost a year of this in total... Is that valid reason enough to go get FMT?

roy
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Re: Doctor Says FMT.

Postby roy » Thu Aug 03, 2017 2:08 pm

Personally if I was having only 1 formed BM daily I would NOT be considering ANY form of treatment or procedure that has the SLIGHTEST risk of making me worse!
If c.diff is causing colitis it needs treating, if not it's just a normal gut flora. (Even if toxins are detected).

christos
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Re: Doctor Says FMT.

Postby christos » Thu Aug 03, 2017 2:31 pm

Well, I feel like Vancomycin is the worst option at the moment of the three. I agree that a positive test doesn't equal CDIFF. But my doctor seems to think it's mild CDIFF.

What's your definition of colitis Roy?

My current symptoms in total are:

1-2 Bristol 4ish 5ish stool always covered in mucus per day.

Loss of appetite.

Bi-lateral intestinal pain and discomfort once every 1-2 days akin to nails scraping my insides.

Random bouts every 3-4 weeks of delibitating pain that sends me to the loo, which takes approximately 3-4 hours to resolve.

Does that not constitute inflammation -> colitis?
Last edited by christos on Fri Aug 04, 2017 9:36 pm, edited 2 times in total.

roy
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Re: Doctor Says FMT.

Postby roy » Thu Aug 03, 2017 2:51 pm

Not my definition but the medical worlds one, abdominal pain and diarrhea!
Most posters and ALL the mods would probably be extremely happy if they only had minor BM problems for a few hours every 4 weeks.
Time heals, overtreatment can be worse than just letting nature do what it's supposed to do.

Musings
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Re: Doctor Says FMT.

Postby Musings » Thu Aug 03, 2017 3:40 pm

Have to agree with Roy, those symptoms would not warrant treatment if that was my experience but we all need to make our own decisions. Recovery can take time and I regret delaying my recovery with my last treatment that I went on because of anxiety over a relapse but do believe, now, that I was healing and would be in a better state had I never took Dificid.

I am 7 months out of c.diff and still don't consistently have Bristol 4 but when I have Bristol 1-4 there is usually some mucus that I attribute to my colon being sensitive to firmer stool after having diarrhea/softer stools for so long. Usually returning to blander foods and having softer stools reduces/eliminates the mucus and have found I can't tolerate pain medication like Aleve.

Your colon was assaulted by c.diff and treatments, it can take a year plus to recover. I had a fairly mild case myself and am still recovery 7 months out so would not be surprised if you had a more acute case that it will take longer.

~Lauren

beth22
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Re: Doctor Says FMT.

Postby beth22 » Fri Aug 04, 2017 12:44 am

I have had mild c diff for a while and my Gi advised me to do an FMT enema at home. I did and I did not get worse. Don't know if I got better and have not re-tested to see if I am still positive.

georgina
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Re: Doctor Says FMT.

Postby georgina » Fri Aug 04, 2017 3:29 am

I also have been dealing with a low-grade infection , i'm even testing positive for toxin A but since i can eat , got fat , feel fine moost of the days , can go on with my life , i decided not to treat. I've been treated with lots of Vanco courses , also had FMt without antibiotic prep and i had a full blown relapse 7 months after FMT , of course during those months i never felt great. After my last course of Vanco i started a 10 days / month (3 months) course of Rifaxine and after each course i felt that my symptoms are getting better each day and i had less food intolerances. After the last course i had a fe rough days when i submitted a test that came back positive , but by the time results came back symptoms subsided so i decided to wait it out and not get treated unless i get a full blown infection. Is been one year since my last vanco course and nothing went full blown , i have good and recently started to have VERY good days , but i also have bad days witch i've learned to deal with and also i do not live in fear anymore. As Roy said ,time heals!

christos
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Re: Doctor Says FMT.

Postby christos » Fri Aug 04, 2017 8:06 pm

Called the doctor to talk to him about not treating.

I told him flatout that a few of you where telling me to consider not being so quick to treat on the FMT, and he said that it's totally reasonable to not treat as there is no immediate requirement for me to. He's relieved that I haven't passed blood again since I last saw him.

He said that I should be fine to go home, travel on the plane with some pepto/immodium and that if in a few months I may "cave in" at a later date and decide to treat with FMT.

Again, he said it's totally my decision... If I can't continue to live on with my current symptoms, then further treatment is the only thing that's going to speed it up or make a change.

The plan at the moment:
1. Try to relax.
2. Been issued a script of Vancomycin, that I can fill if I go nuclear. Nuclear being >3bms for 3 days or more, and preferrably with delibitating pain.
3. Booked in to see a Gastroenterologist who has been trained by Thomas Borody in Australia for early September for a consultation.

I'm not sure I understand why any of you are against FMT in this situation, to me it seems like it's just another way for me to get my flora up to speed, and then push out the CDIFF. I'm not 100% convinced that taking the FMT would set me back I'm just a bit confused on that one because I kind of personally feel comfortable with the idea.....

I'm trying to listen to you all and tell myself I'm ok and that everything is going to be alright, im just in a high stress scenario which doesn't help anything any which way.

I'm just thinking that if in 3-6 months I'm still exactly as I am now I don't consider that improvement and will almost definitely organise the FMT

beth22
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Re: Doctor Says FMT.

Postby beth22 » Sat Aug 05, 2017 12:05 am

I was not saying to not treat with FMT. I have had more than one, but it in my case it was not something that was a miracle cure. However, I did much better with FMT than I ever did taking vanco. You have to weigh the positives and the negatives. My worry was always that I might get some other pathogen or IBS from the donor stool. After using my husband as a donor, I got terrible IBS and SIBO, although thst msy also have been from taking vanco for so long. But, it is always a risk. I have my donor test, but tests don't pick up everything. I have done home enemas when I think symptoms were bothersome enough. Sometimes time heals, but not always.

christos
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Re: Doctor Says FMT.

Postby christos » Sat Aug 05, 2017 12:54 am

Thanks Beth,

I really appreciate everyone's feedback, and I hope no one is taking my comments as inflammatory, I'm just trying to make sure I'm understanding what some people are saying.

I think taking an FMT, 8 days before a 20 hour flight, when my movements are currently "consistent" is probably a risky move. At least I currently know what to expect on the flight this way. But there is a risk that I do take the enema and things get worse (independent of the effect of my CDIFF colonization.) that I might have a worse time on the flight. I wish I could avoid the flight, but I'm technically not allowed to stay in the country.

My doctor doesn't believe I'm a danger to anyone on the plane or anyone in my family etc as I haven't infected my partner, nor anyone at my place at work and I'm not feverish etc...

The GI can probably help me decide about whether my symptoms warrant FMT or whether I have any other options.

beth22
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Re: Doctor Says FMT.

Postby beth22 » Sat Aug 05, 2017 2:18 am

I agree that it is not a good idea to do FMT ( I assume via colonoscopy) that close to traveling. Even after a routine colonoscopy that I had before I ever heard of c difficile, it took a few days to feel normal again and that laxative prep kept on working. The enemas I do at home, I do not do a laxative prep with, but even then I get very bloated and gassy for a few days. I assume it is the new bacteria. If you decide on doing FMT, choose a time when you don't have a lot of commitments and are not stressed out doing it.

amyc
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Re: Doctor Says FMT.

Postby amyc » Sun Aug 06, 2017 1:49 am



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