Did you feel better immediately after FMT?

[HLWI]

For those of you who have undergone a fecal transplant, how long did it take for you to start feeling better and having normal stools?

[Bobbie]

Some people have immediate relief. Some are left with IBS - which usually eventually subsides.

[HLWI]

I had a FMT last Friday and haven't had any change in symptoms at all. I was thinking maybe it would take a few weeks for the ecosystem in my gut to change.

However, when I had Vanco or Dificid I immediately felt perfect as soon as I started taking either of them. So I guess I will be having another FMT... Very discouraging considering a 94% success rate and a lot of people have Cdiff way worse than I do... Oh well

[Bobbie]

HLWI,
Some people have immediate relief of symptoms after a FMT. Some do not. Some docs. say it relates to the amount of time you are able to "hold" the transfer. I held it for 3 days but still had IBS for months afterwards - which eventually ceased. (I was "better" however and tested negative for C. diff.) One of our mod's daughters held it for l5 min. and had immediate relief although I believe she has some IBS (caused by "teenage eating" from what her mom said.)

Were you and your donor properly screened? Did the doc. who did the transfer advice you to eat foods high in fiber after the procedure? (Some docs. think this is important; some don't. The ones that do think the fiber "feeds" the good bacteria.

If you don't see a change in a day or two, I'd contact the doc. who did the procedures. Rarely, some people have to have more than one procedure. I share your anguish, but as one poster said, "It is what it is." Have you had another test for C. diff? Check with your doc. about this.

Let us know what happens. Best to you

[HLWI]

Yes donor was properly screened. It was also a large amount that was deposited in both the large, and small intestine.

Anyway, 17 days later and I don't feel any better. I'll be testing again this week although I am 100% sure it will come back positive. So Ill be having another FMT sometime soon, my thinking is- it would be good to take Dificid before to wipe out as much of the CDiff as possible prior to the FMT. That way there would be less bacteria to combat the reproduction of good bacteria after the FMT. Is this flawed logic or am I on the right thought process here?

Thanks

[amyc]

I believe most doctors do have you take a course of antibiotics before the FMT, but have usually heard that they use vancomycin. I don't see why dificid wouldn't also work if your insurance covers the cost, but that's definitely something to ask your doctor.

[Bobbie]

I don't know as I took Vanco. I also had a series of fecal enemas last year. Not fun but worked.

Do have another test. You might have "just IBS." I've had it after every type of treatment I've tried including the FMT but it gradually tapered -- still have an occasional "off" day.

Let us know the test results.

[HLWI]

I'm sure it's not IBS as whenever I took Vanco/Dificid I felt perfect within a few days. I actually went to Maryland for five days (cross country roadtrip) in September right as I was finishing a round of Dificid and I was perfectly fine... After about five days it progressively came back. Now I've left the house like twice in the past two weeks.

I finished with the Dificid on Sept 29th and had the FMT on November 1st... So the CDiff was back in full effect when I had it done. So no, no medicine immediately prior to FMT. I will get test results back tomorrow or Friday and then I will speak with the DR about getting back on Vanco/Dificid before the next attempt.

[rocket504]

I had my FMT on July 12 of this year. Like you, I think I felt better on vanco. I also have had cdiff at least 6 times in the last four years. I went to the mayo clinic in minnesota. They had be on vanco for 3 months prior to the FMT. I have tested negative for cdiff 3 times since then. My main problem is I cant gain weight. I have a fructose intolerance, which effects me daily if I do not follow my diet. I also had my 19 yo sister pass away in accident 2 months ago, so I think that messed with my recovery. But the docs at Mayo told me it would be 3-12 months before I would feel normal. I do feel better, but I still have those days. Hang in there and eat right. Stay positive! Things could be worst......trust me!

[Bobbie]

I had an FMT andsome IBS afterwards - altho was negative for C. diff. It eventually resolved (it was less than I had after other forms of treatment). I still have some problems - now have diverticulosis - common in people "my age" and my mother had it.

Have you tried supplementing your diet with Boast and/or Ensure? There are many types now.

[HLWI]

Well I tested negative a week or two ago (first test after FMT) but I know it's a false-negative as I've been feeling awful this whole month. This happened three times so far in the past few months (false negative) and each time I have been right and it comes back positive when I retest a few days later.

So hopefully I will get a "positive" (is that an oxymoron?)test result by the end of the week, and then I can get medication Monday and we can try again.

[HLWI]

rocket504 wrote:
> I had my FMT on July 12 of this year. Like you, I think I felt better on
> vanco. I also have had cdiff at least 6 times in the last four years. I
> went to the mayo clinic in minnesota. They had be on vanco for 3 months
> prior to the FMT. I have tested negative for cdiff 3 times since then. My
> main problem is I cant gain weight. I have a fructose intolerance, which
> effects me daily if I do not follow my diet. I also had my 19 yo sister
> pass away in accident 2 months ago, so I think that messed with my
> recovery. But the docs at Mayo told me it would be 3-12 months before I
> would feel normal. I do feel better, but I still have those days. Hang in
> there and eat right. Stay positive! Things could be worst......trust me!

I'm very sorry to hear about your sister. You are right that things could certainly be worse but it is easy to forget that at times. I know it will eventually get taken care of, it's just getting old.

[amyc]

I have never heard of someone getting a transplant done with no antibiotic administered before it. Everything I have read says you should be on vanco up until a day or two before the transfer. You may want to seek treatment somewhere like mayo that has more experience with the procedure. It sounds like your doctor may be using the old toxin test instead of the newer, better PCR tests if you get so many false negatives?

Anyway, I wouldn't want another transfer without a course of vanco or dificid before it.

[Bobbie]

HLWI,
Agree with others - Vanco or Dificid before FMT is a must. Again, I question putting the transfer into the small intestine. Be sure and get this clarified with your doctor before you have another FMT.

To all, please don't use "quote" feature on site as we have so many posts. I am going to ask the web master to remove this feature if he can. Just put the poster's name and or/ the subject, if you are asking him/her something.

[HLWI]

Regarding the small intestine, 80% of infusion was put in colon, 20% at top of colon by small intestine valve? So that could only help I think versus only putting it in the colon. That seems to be a fairly large amount compared to most FMTs I've seen. And yes this was my doctor's first FMT- but he seems to be highly regarded. I'm not sure why I wasn't given medication before the procedure, but now looking back it doesn't surprise me that it failed. Going to have to see why that was overlooked- that actually makes me very angry now.

Tested negative again today, (2nd test since procedure), but I am feeling bad as ever. I am going to call the hospital to see what test they use. Since it has false negatived 3 or 4 times prior I don't really trust it.

Edit: called and they use the PCR test... Now I am stumped.