Did you feel better immediately after FMT?

[amyc]

Oh boy. All I can advise is for you to select a doctor from the list on this site or at Mayo to see if they can straighten things out for you. Or I have seen reports that some patients require a single 10 day course of vanco at the 125 mg 3 or 4 times a day post FMT to get to fully cured. I think I would call the doc to request the vanco treatment to see if it would fix your problem? Also, have they tested you for parasites like Giardia or cyclospora?

The 10 day vanco wouldn't kill the bacterioides and good E. coli you got from the FMT...it sounds like it would be worth trying.

[Bobbie]

Have mentioned several times that some C. diff. experts don't agree with putting mixture into small intestine -think it leads to SIBO and IBS. Several of my treatments involved this - I had IBS for years - which gradually decreased in severity. I was so thrilled to be over C. diff., however, I was able to largely ignore it - but I worked most of the first two times I had C. diff. which helped. Had C. diff. l993-l997, l999, and again in 2011- all related to antibiotics which I had to take - pneumonia (hospitalized twice) and serious UTI not caused by E. coli. (My case is unusual so don't panic. Many never have C. diff. again, but do be careful about taking antibiotics.

The PCR is not perfect but has a high degree of accuracy. I don't know what to tell you except to see your doctor again and ask his opinion. Remember, this is not a medical site, and what I posted above is strictly my own experience and the opinion of one C. diff. expert. Two doctors (even in the same field) seldom agree on anything. I was on a high dosage of Vanco. for weeks before my FMT in 2012.

Remember, the most important thing is the negative C. diff. test. See CDI - The Three Day Rule and CDI - IBS. I know you are hurting; perhaps your GI will have an answer. I took an anti-spasmodic for years and found drinking a lot of water helped - but you can overdo it, too. Did your doctor mention your diet. Most FMT docs. want you on a low fiber diet before the procedure and a high fiber diet afterwards because fiber is supposed to "feed" the new good bacteria. I am "beaned, hummused, Benefibered, fresh vegged out." I still have good days/bad days, but the good days outnumber the bad.

Let us know what your GI says. Hope you find some answers.

[HLWI]

Roy maybe I have the wrong #. And yes, I have "D" every day many times and feel just as bad as I have for the past few months. And Bobby yes I appreciate the advice, obviously I will speak to my doctors before I make any decisions based on internet reading. I may consider going with a different DR as I have U of Chicago and Mayo both decently close. More tests to come...

[Bobbie]

Know how upset you are. Check out our Doctors forum to see if future doctors are listed - and also the doctors listed on LINKS on the home page.

IBS is not fun - had it for years - and sometimes still have bad days. But it "ain't" C diff. and for that I am grateful.

Did your doc. tell you about eating roughage? (Can't remember if I mentioned this to you or not.)

[HLWI]

Yes you did mention that. He did say that I should eat a lot of fiber- and I have been

Also Roy, it was 700cc mixture not 1700 :)

[beth22]

I had about 250cc put into the terminal ileum/colon for a colonoscopy transfer and it was after that when I got terrible IBS and SIBO. Later, I was told the stool should not go into the small intestine at all, only the colon. I don't know if that is true about putting it intot he terminal ileum. That is one protocol, but it gave me bad IBS and food intolerances. If I were to do it again, I would ask that the stool be deposited only into the colon.

[HLWI]

Interesting about the SIBO. I was reading about it and will bring it up to the doctor and ask them to test for it.

They did more testing and supposedly I definitively don't have CDiff anymore although I find it very weird since nothing has changed at all.

The doctor says it may be Ulcerative Colitis, that is what they diagnosed me with before CDiff and the medication for it had zero effect (because it wasn't UC, it was CDiff...) So I said, how come I felt 100% better when I took Cdiff medication If I've had Ulcerative colitis the whole time? He had no answer, I guess I am back at Stage 1. Colonoscopy this weekend... and then will be looking to other doctor if he doesn't come up with something good.

[beth22]

Have you been checked for Crohn's? What about gluten intolerance? I was checked for everything and the only thing that was higly positive was the breath test for SIBO. It might be worth pursing that.

[HLWI]

I have been tested for Crohns in the past- came back negative.

Had a colonoscopy yesterday and I was diagnosed with UC now. Thanks for everyone's advice and help.

[beth22]

The same thing happened to the son of one of my friends. He got it after c diff and his doctors say that the c diff triggered it. He is in his 30s and never had problems before the c diff.

[getwellsoon]

So sorry you have UC but at least its a firm diagnosis and you can go from here. I hope the meds they put you on help with the pain etc. Carol

[sickofthis]

I have been reading this post and from what I have read FMT should only go into the colon, not in the intestines, is that correct? And if this is correct would a FMT via enema be better then one done via colonoscopy? Trying to figure out the proper and best way to have a FMT done before getting one.

[sickofthis]

Thanks Roy,

I joined and read that they go up to the terminal ileum, so confused. Where should they go to? I bet if you asked 10 doctors you would get 5 different answers.

[beth22]

You are absolutely right about the varying opinions. The doctor who did my NG transfer swore it was the only way. The ones who did the colonoscopy transfer said it should be put into the terminal ileum, although I know of some doctors who go up as far as, but not crossing into, the terminal ileum. And there are other doctors who say only in the colon, but you can still do this via colonoscopy. An enema probably will not get all the way up the colon with the turns it has to make. Some doctors do the colonoscopy first to make sure to hit the entire colon and then you can follow up with enemas. I know this doesn't help you much, but discuss the possibilities with your doctor.